Recovering From A Pulmonary Embolism - What To Expect During Pulmonary Embolism Recovery

Nita 2 years ago

Thank you sooo very much for writing this. I am 4 weeks past the PE & 2 days in the hospital and and am trying to figure out why I have so much chest pain. They have run extra blood tests and a chest X-ray but only have guessed it could be plursey or infartation (sp?). Your time spent on this article was a blessing to me. Thank you.

Stephanie 2 years ago

Yes! Thank you very much for writing this. It has been a long and hard 4 months since my PE and 3 surgeries and two filters later, I am struggling to see an end to this chaotic mess. I am 28 years old and I feel the research and doctors have a harder time dealing with my complaints and questions because most of them are due to my age, wanting answers and results now. I want to get back to my normal life, especially doing triathlons again, or at least being able to walk at a normal speed, not 2.5mph....

It is good to hear more of an estimate for how long recovery may take. With PE's being the third most common cause of death it is amazing how little recovery information is available.

Chris Hartman 2 years ago

Thank you for writing this - I am also finding it hard to get any answers from doctors about recovery time - I find the pain medicine helps and also helps me not to be constantly reminded of the problem I have. I am wary of becoming dependent on the medicine though.

Peggy 2 years ago

I was diagnosed with PE 5 days ago, spent 3 days in hospital and like you, was happy to come home. I am trying not to hyper-aware of every little symptom, but without much info on recovery it is hard to know whether something is a new symptom or part of the recovery process. I get daily headaches (new), back pain and nausea. I still have trouble taking a deep breath, Xanax helps some. I just want to get back to my normal life!! Thanks for compiling all this info!

RLee 2 years ago

Thank you for the information!!! I am still dealing with the mental fallout from realizing how bad I was and the posts here will give me peace of mind that I have been looking for. It's so hard to have others relate to how I feel. Thank you so much!

Peggy 2 years ago

Thanks for the offer on headache info --- I want to discuss with pulmonologist at appt tomorrow. I used to get migraines and these are not the same. I will say that even since my previous post, I have noticed improvement in breathing -- Thank God for Xanax. Once the struggling for air starts, you tend to start hyperventilating - just .5 mg Xanax seems to calm it all down. I am able to walk a mile each morning and am planning to return to work tomorrow if my INR is still good.

Stacey 2 years ago

Reading this website was extremely beneficial. My mom broke her ankle in the beginning of August severely enough that it required surgery with 6 screws in a plate. 2 and a half weeks later, she was hospitalized with a pulmonary embolism and which was caused by the blood clot in her leg ( they discovered that this large clot was from her ankle to her hip!!) She was in the hospital for 11 days and is now home. While there she contracted C. difficile so she was ill on top of all this. She is still working on using her leg ( she is allowed a walking boot) with her walker but she still gets winded and is not able to do much during the day. I often worry that I am never going to have my mom back the way she used to be (extremely active and always busy) but now I see that recovery won't happen over night. Thank you for the article and for letting me share my story.

Sharon 2 years ago

Thank you so much for the article. After a PE, the source was in my leg, I am trying to adjust to everyday living. I was not made aware that I would still have the lung pain and shortness of breath. I am trying not to panic when this happens but to also be cautious. Your story and others comments have greatly helped me.

Lucy Pearse 2 years ago

HI all

I have to admit i have found your blog to be really helpful, i am 25 years old and was dianosed with a PE 5 weeks ago, i am still breathless and in pain, i am depserate to get back to work but doctors dont feel it is safe at the moment. I feel uselss and wish i could do more.

Is there any tips anything i need to look out for?

BeccaHubbardWoods 2 years ago

Thank you for this article. It's been almost two years since I was diagnosed with bilateral PE. I still hurt in my right lung. Sometimes it's worse than others. Saying that pregnancy is still possible brought me to tears. While I have two children already, I would like to have one more. My backwoods family doctor simply told me to give it up and forget about it. My pulmonologist asked me if I was going to have more, which did nothing but cause confusion. Thank you for making me realize it's time to change doctors and maybe there is a chance I can have another baby.

Peggy 2 years ago

Lucy - I had PE diagnosed 8/30 and was able to return to work 9/8. I still have a lot of shortness of breath and difficulty getting a deep breath, but as long as INR is consistently monitored, my doctors felt returning to normal activity was better than being home. I agree! I have follow up with pulmonologist on Monday a.m. and will have Pulmonary Function Tests to see why I am still have so much problem getting deep breath this far in. He has also recommended another echo cardiogram as there is a possibility of secondary pulmonary hypertension. If I find out anything new and interesting, I'll post.

Peggy 2 years ago

So pulmonary function tests were good as was a follow up echo cardiogram. I really didn't want the tests, but I guess in the long run, it rules out any other organic cause. The shortness of breath improves daily, but don't expect it to be completely resolved for months. The constant INR's are just an annoying bonus! Can't wait for that to be over. FU CT Scan end of November........

Rhonda 2 years ago

I am so glad I found this post. I found out I had pe on Aug26. I was in the hospital for 5 days. I returned back to work on the 21st of Sept part time and full time last week on the 28th. Today is Oct 6, and I am starting to feel panic. Walking the down the hall today I got very winded. I am not a fast walker, really never have been. My gout is acting up so my walking is slower than normal. I dont know if my mind is playing tricks on me or if my body is telling me to slow down and take it easy. I go back to the doctor next week for my pt test. I just need help to get over this feeling. Is this normal?

lucy 2 years ago

HI all

Thanks for your posts, the reason i am still off work is i get shortness of breath after 20m and have a ;pain in my chest on my right side constantly, i am also very tired and bretahless, i was admitted last week as they suspected i had another PE, however fortunately i didnt although i still have my chest pain etc, today i went in for my routine INR and it was low 1.9 normally stable at 2.5, i alsi expereicned pain 9 chest pain and grasping for breath, the duty gp told me not to worry as last week they did not find a new clot so it will be ease lol, he told me to breathe it and not be paranoid, i was very distressed by this comment i am not been paranoid!! i have sen my own GP since this morning who informed me that i am not paranoid but there was nothing they could do until i see the specialist does anyone else have the same problems.?

I am fed up with the fact that people think your paranoid he told me that he empathasises with me, how can he.

Peggy 2 years ago

It is very easy for healthcare professionals to dismiss the shortness of breath and pain as anxiety and "hyperawareness" syndrome. While being more of aware of the way you breath can cause you to feel more symptoms, there is also a component that is not anxiety induced! The sad part of this that you now become afraid to mention any symptoms b/c you don't want to be deemed paranoid. It takes time to heal and while healing you WILL have symptoms, just keep your INR in check, watch to be sure your ankles don't swell and if the symptoms are severe enough, see a different pulmonologist.....

Lucy  2 years ago

HI

THankyou so much for your advice, it really helped me, I have made a website, a blog really for people to air their comments etc, can i recomend your website to people as i do feel that it is excellent and that you have supported me more than you can imagine, i hope you dont mind me asking.

Marisa 2 years ago

Thank you so much for writing this. I had pulmonary embolisms for a month but was originally diagnosed with pneumonia (my veins at the time were impossible to get a big enough IV in). My symptoms got worse to a point where I was completely out of breath only mustering one word at a time before I went to the ER. I just got out of a 7 day stay in the hospital and was on heparin and coumadin the entire time. I have had stabbing chest and back pains now for over a month and they are continuing even after my 7 day treatment. I sleep continuously throughout the day and still occasionally get short of breath. I was given Xanax to help with the anxiety of not being able to catch my breath which has actually helped. My pulse is finally under 130 and was actually 95 today. my blood pressure is ALL OVER THE PLACE. It has gone from 130-80 to 87/42...... I still have many more appointments and am on oxygen now.

BTW, I am a 25 year old Female of lower average weight. I am waiting for the genetic blood tests to see if I am predisposed to blood clots.

Again, thank you for sharing and also stating what RECOVERY is like. It explains a lot of what I have been feeling since I got out of the hospital.

James  2 years ago

It has been a little more than a year since my hospitalization, and I still suffer from chest pain, shortness of breath, and fatigue; I’m glad to find out that I'm not the only one who has had a long recovery from PE. On September 22, 2008, I was taken to the ER because of shortness of breath, after an EKG and other tests; they decided to perform a CT scan. The CT scan showed that I had "Showers" of blood clots through out both lungs, that is how the doctor described it… They immediately started lovenox injections, a heparin IV, and warfarin. After seven days in the hospital, I was sent home on warfarin and my INR has been consistently in the 2.3 – 2.8 range. My hematologist has performed genetic testing, once while I was in the hospital and again this past March, both times I tested positive for the antibodies indicating I may have APS, (Antiphospholipid Syndrome, i.e. sticky blood), he is going to perform the test again in February to confirm or deny that I have this condition. Anyone else have a diagnosis of APS?

Vicki 2 years ago

My 19 year old daughter had ankle surgery on 09/18/09 then was diagnosed with a DVT on 10/06/09. She was hospitalized and IV Heparin and Coumadin was started. Two days after she was in the hospital she developed a fast heart rate; thus a CTA was performed which showed she had multiple small pulmonary emboli that had showered in both lower sylobes of her lungs. They said it was the same treatent and continued her Heparin and Coumadin. Once her INR was 2.1 she was released from the hospital. Three days after being released from the hospital she developed chest discomfort. Her primary care physician ordered a CT chest which was done at his office. The CT chest showed that she now had much worsening of her pulmonary emboli; they were concerned she even had a saddle emboli. She was rushed back to the hospital and admitted to ICU. She continued to have the chest discomfort and only slight SOB. Her vitals were normal and her O2 sats remained normal between 96-99%. They started her on Lovenox injections and stopped the Coumadin. Her second day in the hospital, she developed chest pain, not just discomfort, now it was sharp chest pains. They repeated the CTA which showed multiple large pulmonary emboli in both lungs but no saddle emboli. The treatment remained the same with the Lovenox injections since her vital signs and O2 sat were within normal limits. She was released 5 days ago and she is taking the Lovenox injections twice daily. She is still having episodes of SOB, extreme fatigue, severe and dull chest pain, nausea, and she feels lightheaded. As with many of you, I have been trying to find more information on symptoms that follow Pulmonary Embolus and what to expect in the recovery. I have called her hematologist but was advised by the nurse that he would go over everything at her follow-up appt. I just need to know when we need to do something or if it is to be expected in her recovery. She is a sophmore in college and was hoping to return to classes next week; however, I am concerned that she will not feel up to it for several more weeks. Are her symptoms normal and to be expected, and if so, how long were your symtoms this severe? I appreciate your help!

Mary 2 years ago

Thank you so much for your article on recovery! I had begun to think my exhaustion was just me being a wimp. Interestingly, your research and everyone's observations have me concerned again over an issue I battled after experiencing a head injury seven years ago. When I talked with a neuropsychologist about how my colleagues often seemed not to believe me when I told them of the head injury problems and/or called in sick, the neuropsychologist said that a head injury is considered an "invisible injury" in that, because people can't see obvious signs of it, they only have so much patience with accommodating sick leave, headaches, and other sensitivities. Do you think PE may also be considered an "invisible illness?" I have a new job since the head injury and was enjoying starting over without being regarded as unreliable, but now I'm concerned I'll end up going through this perception problem all over again. I enjoy my work, I want to contribute, to be taken seriously, and to be believed. Guess I'll have to talk to a therapist about how to handle the interaction so I can safeguard my health after the PE but also still enjoy my job and contribute. I don't mean to sound like I'm complaining, because in truth I'm extremely grateful to be alive. I don't have the "why me?" and "this is unfair" reactions that I had after the head injury. Instead I'm most interested in moving forward, so I'm wondering if any of you have experienced problems in your workplace with people not believing you about your symptoms that you need to take care of and how you handled this situation - if you've experienced it.

Carina 2 years ago

Hello. Thank you so much for writing this! I felt so relieved to know another person's experience.

I had just turned 21 when I had a pulmonary embolism. I stayed in the hospital for 7 days. Since then I've been home for almost 2 weeks.

A week after I left the hospital, I went back to college. I felt fine during the day but then really exhausted at night and decided to rest for a few more days.

So far I've been really lucky. I haven't experienced any pain, only a slight shortness of breath. This was my first major health problem... before this I had always been the healthiest person ever, taking all the precautions to stay that way.

I feel that my mind needs to recover from this ordeal just as much as my body. During my hospital stay I broke down in tears twice. After being released, I felt constantly scared of any problems in my body. At night I was afraid to fall asleep and never wake up again.

It's true that the recovery is much longer than simply the hospital stay.

JosieB 2 years ago

I had a PE and was admitted to the hospital on Oct 1st this year. I was in the hospital for 5 days. I returned to work after being off for three weeks. I'm still part time but will increase hours in a week or so. I am still dealing with a lot of fatigue and a constant lightheaded feeling. I do feel it is from the PE. I was very lucky. I had extremely large clots in both lungs. I went to work for over a week with SOB and swelling in my affected leg that got worse by the day. I was told by several doctors I was lucky to have survived and that people die everyday from PE's that are a lot less invasive than mine. I only went to the ER because I had a massive headache, nausea and SOB that did not go away after I got to my desk the day I ended up in the hospital.

My O2 sats were never below 98 before I went in the hospital. Since I have been out they run 91 with light walking and my pulse goes up to 120 to 150 easily. I get lightheaded and faint feeling when talking or standing in one place for extended periods of time. I was fortunate though that the doctor that saw me in the ER ordered a D-Dimer blood test and when it came back elevated they did a lung CT with and without contrast. That was when the truth came to light. My flight home from a two week vacation was probably the culprit.

All in all it has been an eye opening experience. I am slowly getting better. I have problems with an abdominal bleed a few days after I got out of the hospital when my warfarin spiked up. I have had problems with fuzzy vision, headaches, fatigue, shortness of breath, fuzzy memory and slow thinking as well as nausea and diarrhea almost daily. I think it will get better with time.

Other people have a hard time understanding how slow the recovery is and that it takes time to feel better. I have said numerous times that when a person is ill if they don't have an external wound it is hard for others to understand how sick a person is.

Thanks for your wonderful site and information regarding your own personal experiences and recovery!

Alicia S 2 years ago

I am so glad to find a site that offers support such as this. I was hospitalized Labor Day weekend with 3 large PEs, and I was kept in the ICU for 5 days with the usual heparin drip and coumadin intro. It has taken over 2 months for my INR to finally reach 2.97, all the while, taking 16 mgs of coumadin nightly. I have been in the ER twice since my hospitalization with SOB and related symptoms. I have seen a hematologist and was diagnosed as Protein C and Protein S deficient. My hematologist informed me that I will be out or work for atleast one year, possibly longer, as there are residual problems stemming from my experiences. I am being sent to cardio this week to rule out any cardiac damage and to rule out secondary pulmonary hypertension. I am also having a repeat CAT scan to see if my clots have dissolved at all. My recovery has been shaky, at best. I am scared when I go to bed each night that I may not wake up in the morning. Dizziness, fatigue, anxiety are all part of my daily norms. This entire situation scares me because I am a 45 year old single mom. My daughter has seen me at my worst and she lives in constant fear that she may come home from school one day only to find me dead. How sad. She'll really flip out when I tell her that because my blood disorder is inherited, she'll have to undergo some lab work to determine if she is going to need treatment. I hope/pray each and every day that God sees fit to let me see another day! Thanks for letting me share. Nobody in my family understands and although my friends say they want to listen, they really can't know what it is like to live with this condition.

Allison 2 years ago

THANK YOU for this article. I can't tell you how much I appreciate it. I was in the hospital less than 2 months ago and diagnosed with a PE. I have had chest and back pains ever since, sometimes worse than others, and it is such a nerve-wracking feeling. Reading this article, and the comments that have followed, have put my mind at ease. I don't want to be viewed as a hypochondriac or alarmist, but as others have mentioned, these residual feelings are so scary and unnerving, it is so hard not to panic.

Thanks again for posting your experience(s), I truly appreciate it.

Allison

A well-loved wife & mommy of two:)

Carmen 2 years ago

I sent this article to everyone in my family - thank you so much! After much Googling and several Doctor's visits I finally feel more relaxed that my fatigue, heart racing and lightheadedness is all normal... It's been a frustrating process trying to get recovery information from the Doctors. I was diagnosed with PE a month ago and after a week in hospital stayed home for another 2. I expected everything to go back to normal and couldn't understand why I felt so tired (almost fell asleep at the wheel!) but am now learning to listen to my body without feeling like a "hypochondriac". Thank you so much for this article and for everyone who's contributed to it!

Elizabeth 2 years ago

I'm so glad I found your story - I was beginning to wonder about myself! I had bilateral PEs diagnosed in the ER about a month ago, spent about a week in the hospital and then another week in a rehab hospital. I've been home a week and thought I'd feel as good as new -- wrong! I'm so tired, still have sharp but intermittent chest pain (guess that's why they sent me home with all those painkillers) and don't feel anything like new! But it appears I have plenty of company...

Dayna 2 years ago

This has been very helpful. I am a 36 yr old that has had several knee surgeries in the past. On Friday the 13th (nov) I was experiecing a little pain in my knee that caused me to limp a little bit....by 3a.m. I woke up in tears with terrible pain throughout my knee. I limped around for another day and by Sunday I couldn't put weight on my leg at all. I saw my Orthopedist on Tuesday the following week which by this time the pain was terrible in the knee itself, but also through my entire leg (hip to ankle). The Dr. tried to draw fluid from the knee so tests could be ran...nothing. So I was sent for blood work to check for infection (my leg was very swollen and a little red, these tests revealed nothing too)and immediately back to my small town hospital for a Ultrasound on my leg to check for a DVT. The result was negative, so they released me and out I went for an MRI the next day. With a old ACL injury the film was scattered from metal, so they preceded to schedule a scope surgery for Friday the 20th. The swelling had already gone down prior to the surgery, had the knee scope and went home. The following Monday morning I awoke at about 3a.m. with ribcage pain. It felt like I was hit by a car...I ended up in the ER with bilateral PE's. I was in the hospital from Monday to Friday working with the blood thinners, seems routine in all comments posted. My vitals were good...but it seemed the day I was released, I felt worse than the day before. I have not done follow up care yet, that will be this week...but I think they feel this came from my knee surgery and I think I may have had it before and that is why my leg hurt so bad. I don't want them to blame that and not find the root cause...I had no injury to my knee when it started hurting. I have had some trouble w/ an epidural during delivery one year ago...and ever since then I have sufferd with lower back pain (which seems a little worse now) headaches (which seem more frequent again) and I am low in vitamins B1,B6,B12,D,Potassium and Magnesium. I also experience numbness...but needless to say the PE's are causing me to be tired...with chest pain, more of a compressed feeling I guess. I wonder if anyone had anything like I did? I am very confused right now, can anyone suggest anything?

Beth 2 years ago

Thank you for writing this! I developed multiple bilateral pulmonary emboli October 2008 following surgery on my leg and experienced respiratory failure. At this same time, I also developed infection in my bone, my blood and my heart (endocarditis). I have asthma, pulmonary hypertension and congestive heart failure though, fortunately, with only mild shortness of breath most of the time. My heart occasionally goes into a-fib. I had surgery again in September 2009 and developed PEs again. My medical record from this last hospitalization says, "The pulmonary emboli have increased since December of 2008." Increased! I foolishly thought the PEs from the first time would be gone. Does this mean my lungs are permanently affected by them? I ask because I feel so fatigued. I go to physical therapy, but find that after 6 weeks of PT I don't feel in any better physical condition. I feel horrible after only 3 minutes on a seated stepper, but persist the full 10 minutes anyway thinking I easily did this last spring after the first round of PEs and I'll only improve if I push myself to try. Yet I don't improve. I'm also anxious and depressed. I have trouble concentrating, too. I'm very, very tired all the time. Why didn't my doctors say anything about how I might feel following PEs? I've been feeling so guilty all the time because I thought I was just "acting like a baby".

Meg 2 years ago

My very non-sedentary, active and healthy husband was diagnosed with PE, got pneumonia secondarily, and stayed at the hospital for only 4 days. He has now been released to my care. I am somewhat apprehensive taking care of him. Last night he sweat excessively all night. Is this normal? His breathing wasn't great either. They said he still has the blood clots, and that I am to continue giving him his lovenox shots in his belly, which is now black and blue from the shots. We have our first visit to check his INR tomorrow, but in no way is he within normal range. They have no idea where the clots came from either, since he had no surgery on his legs, although he suffers from chronic knee pain from sports injuries. Nothing showed up on the ultrasound, either. Does anyone else not have a clue as to where the clots came from?

Dayna - update 2 years ago

I thought I would touch base again to fill readers in on my story. I have been seeing my PCP, a hemotologist and a pulmonologist. Come to find out after a 1 week stay at the hospital...my blod clot was still present behind my knee. Since I was on coumadin already the doctors told me it would dissolve (and I thought I would need a filter). I still can't bend or straighten my knee without severe pain...it feels like something is behind my knee and lifting my knee cap. I am not a baby and can handle pain, but this isn't the same pain as just having a meniscal repair...it is different! My hemotologist has diagnosed me with "Lupus Anticoagulant Syndrome", which I will need to be re-checked to make sure I didn't has a false positive test. Who do I see for that? Why me? My pulmonologist had told me that the vessels my PE's were in will never heal....they are ruined. My PCP really hasn't done much other than control my INR (which is done w/ a finger prick...are those even accurate?)

I feel like I don't know what specialist to see....my ortho has been the most help and they are the ones who finally found my blood clot. Had an ultrasound prior to a knee scope and they found nothing....had a repeated ultrasound during my week stay at the hosptal...again nothing. After being discharged from the hospital, my ortho ordered a CT scan and there it was! So I am frustrated that my home town hospital missed it twice and also upset because they would not do a CT scan (had to go out of town) because an ultrasound is normal protocol (even knowing that ultrasound is famous for missing a DVT in the lower leg). GET CT SCANS!!!

So now I just want some answers to how I will be treated for this and by who. I still get short of breath, my chest still hurts and I get tired very easy. I am doing PT for my knee, but most of all I just want to walk normal again and know what its gonna take to live with this new lifestyle. I will keep every posted...

joe 2 years ago

I spent 7 days hospitalized with bilaterial PE'S in October.

Joe 2 years ago

After spending 7 days hospitalized with bilaterl PE'S in October, my PCP refered me to hematologist. He told me that he could not do any testing as long as I was on thinners...Still no answers, and mt R foot will tingle after setting for 30 minutes or more. While my L calf will swell and ache after driving for an extended period of time.

I too am still have shortness of breath, which seems to be better in cold weather, and worse in a warm room.

Lung Dr has yet to tell me anything. Where do I turn for answers?

Ang Kennedy 2 years ago

Thanks so much for this information. I was diagnosed with a very small PE a month ago and I was feeling better for a few weeks and now I'm having a lot of problems breathing again. I also have near fainting spells from low blood pressure. I couldn't find any informnation on how long symptoms could last when I was just searching for Pulmonary embolism.

Eddie 2 years ago

Hi it was nice to find something on recovery,I had a bilateri PE on the 5th of January spent four day in icu and three days in a step down room i was released and was glad to start recovery but to my surprise 5 days later i passed a clot again now i sit in the hospital in recovery process again. But i would like thank you for some hope in my recovery I know

joe 2 years ago

Had bilateral PE's in Oct. Still have shortness of breath, never had before. 60yr old non smoker, who was extremely active

Had A PFT this wk.FVC is 81%, FEV1 is 61%, FEV25-75%/Lsec is 49%,PEF is 32, FIVC is 72% and MVV is 54%

DLCO was 87%. DA Adj. 87% and VA was 79%

Would the PE,s cause damage like this?

AG 2 years ago

Thanks for the Article , it s strange that not much info is available when it comes to recovery from PE ... i am a Doctor and my wife was diagnosed with a PE a month ago .. shw wasin Hospital for one day only and she is now on warfarin .. she is normally well and healthy , never had any problems before , no risk factors , no history of DVT , no family history of any throbophilic conditions and she is only 35 .. she is still complaining of chest pains , shoulder pains , she gets short of breath and she uses inhalers on regular bases .. her INR remains at about 2.8 ... she get a lot of non specific symptoms that ll come and go .. i hope that the absence of any other medical problems and her age will make recovery easier for her .. i am convinced that the psychological aspect is the key issue..thanks for the article again and i wish that u r feeling better day after day ...

D.S. 2 years ago

In a previous reply to a comment you mentioned "I feel lost these days, like I was chosen for something but I have no clue what it is..." I think this is what you were meant to do. Your article and your informative comments have been key in helping me get through some of the rough patches in the two weeks since being discharged with multiple pulmonary emboli in both lungs....and I am truly grateful.

Doctors have been quick to just dismiss problematic symptoms as simple anxiety. I have learned through researching on the internet that some of these "side effects" that people are experiencing are related to the blood thinning drugs as well as other drug interactions if they are on multiple medications. Also it seems that people experience more problems when their INR hits a level that seems to be unacceptable with their bodies.

In dealing with these symptoms I suggest people regularly monitor and chart their blood pressure and heart rate. Also start a food log because of the problems of Vitamin K and blood thinners. My INR dropped from 2.4 to 1.5 in several days even though I was on 7.5 warfarmin. Needless to say my doctor had no clue to as why this happened. I realized that even though I was not eating the dark green leafy stuff that I had eaten other things that contained vitamin K. The combination of all these foods in a short period of time and given me enough Vitamin K to drop my INR levels. So printing out a list of foods containing Vitamin K would also be a good idea. Learning about and involving yourself in any time of meditation and breathing exercises is also helpful because it will not only get you through anxiety and temporary breathlessness but it will help strengthen your lungs.

Lastly I can not stress this enough: if you find your doctor is not having enough concern for you during your recovery seek another doctor. (A doctor who lacks communication skills and empathy will also cause a lot of anxiety in a patient.) A patient must be able to trust that his physician will give him the best care possible - we pay them for this service.

I wish everyone the best in their recovery. And again thankyou Lwelch so very much for this information.

Yvonne 2 years ago

Thank you so much for sharing your journey. I was diagnosed with a DVT and the very next day was admitted with a PE. I am 30 years old with 2 young children at home and this experience has been so hard emotionally and physically. I am grateful to read about people who have gone through the same thing I am going through now.

cahikerchick 2 years ago

I recently spent 9 days in the hosptial due to PE. I am a 52 year old female and an avid hiker(10 - 15 miles at a time). For the past 8 years the doctors have done various tests to find out why I am consistently SOB and have rapid heartrate with any exertion as well as a DLCO of 48% - 54% (all other PFT numbers were normal); I am always at the back of the hiking pack despite my weekly hikes. PE was always considered, but a VQ scan in 2003 was clear as was a CT in 2005. In 2008 I had a VQ scan that was positive, but a CT the next day was clear, my cardiologist did not act on this. On January 2nd of this year I was awakened by severe pain on the right side of my ribcage which resolved until January 11th when I woke up thinking I was having a heart attack, the pain was sooo severe. A chest xray showed plural effusion and a CT showed bilateral pulmonary emboli. It seems that a PE caused some damage and the pain was due to fluid between the lungs and the chest wall. I had noticed that the previous month I was more short of breath than normal when hiking. When I went into the hospital, my pain had subsided, I felt perfectly fine...maybe just a little more short of breath than usual. I tested positive for two genetic clotting factors, Factor V and Prothromin; I was also on oral contraceptives. Fortunately, my clots did not develop in my legs and they were small. The pulmonologist believes that I have had chronic PE's and this could be the reason for my low DLCO and high heart rate and SOB with hiking. I also ended up with a rare reaction to the Comadin with regard to my liver enzyems, and have to take Lovenox daily; probably for life. By day 5 of the hospitalization I was going stir crazy, because I felt fine. Once I got home, I took a week off from work, mostly because I would get so tired during the day, which I attributed to being hospitalized for so long. I did go hiking a week after release and was more SOB than normal. I hiked last weekend and did better than usual. I've been back to work one week ago today and I feel completely back to normal. I believe that I am on the mend, and hopefully my 8 year quest to find an answer has been resolved. I will continue to see the pulmonologist and will be seeing a hematologist who specializes in clotting disorders this week. I felt sorry for myself for about 5 minutes. I still consider myself healthy, doing daily injections is a minor inconvenience. I feel lucky to be alive.

Arthur  23 months ago

I am 30 years old and Active Duty Military. Have a removable filter and doing the anti-coagulation therapy. Filter is due to come out soon. Have you heard anything about being able to stay Military and continue with this condition?

Doriann 23 months ago

Hi,

I had a saddle pulmonary embolism on 21st December 2009, 3 weeks after an achilles tendon repair. When the embolism hit I had a type of siezure, I think that was when the clot went through my heart, followed by a sustained peroid where I was unconscious. I was fortunate my mother was with me and she grabbed me and shouted. I believe at that moment I died. I did come round and the next 12 hours (which are critical in treatment of a PE) I lay around the casualty and ward of the hospital. My parents called an abulance which arrived but the people we not trained, they even asked if I could walk downstairs which I couldn't I had a huge fibre glass cast from the surgery. I was also in and out of consciousness. I was actually fainting continually as the oxygen saturation dropped and my brain wasn't getting enough oxygen. I went down the stairs on my bum one at a time stopping to faint every few steps. I eventually got into the ambulance and was taken to the nearst private hospital. The doctor on duty thought I may have a cellulitis in the wound from the surgery. They did put me on oxygen almost immediately which improved my condition hugely. He did a FBC and the white cells were marginally raised, this was conclusive (he thought). He spoke to the surgeon who did the repair and the surgeon asked him to remove the cast to see if there was a possible infection. Neither of them suspected a clot. I find that very hard to believe as I had had leg surgery a few weeks before and that is a major risk factor.

Fortunately, he admitted me and didn't send me home and put me on an antibiotic drip. I went to the ward which was about 3 am. Once they had gone through all the administrative stuff that goes with being admitted my parents left thinking I would be fine now. However, as time went by my condition deteriorated and I was battling to breathe. I repeated called the nurses to assist me and call a doctor. They did not. I asked for a nasule canula as I felt claustrophobic with the mask on my face as I couldn't breathe. When I complained of chest pain they did an ECG. After many hours at 8 am a doctor was finally called and I was wheeled immediately into ICU. They gave me the low dose heparin injection and sent me for the doppler and contrast CT of the lungs. It was only then that they realised the severity of my condition, it was clear the heparin wasn't going to help. They sent a cardiologist to do an ultrsound of my heart. It was taking major strain, my heart rate went up as high as 190, but sat around 140. The oxygen saturation at this stage was 65. It was at this time the doctor said to me that he was going to put me on a ventilator as I was getting tired and the breathing more laboured and more ineffective. He also sad they were going to thrombolyse me. Which they did. A few hours later my saturation was 94 on 100%oxygen and my other vitals stabalised. Fortunately, it worked. I also had not major ill effects from it no cerebral haemorrage. I did bleed internally and was covered in bruises. My haemoglobin dropped 4 points in one day but stabilised after that. I was in ICU for 5 days and then in a ward for 3 before I went home. They made sure my INR was at least 2 before I could leave and I continued injecting myself for 6 days after leaving the hospital.

Its now 2 months after the event, I haven't been able to do much. I also have the physical irritation of the achilles tendon which requires physiotherapy and exercise all the time. I haven't been back to work for more than a few hours at a time (I am a pharmacist in private practice). I find that if I do too much in a day I start to feel physically ill, sometimes only the next day. I have flushes, sweats, headaches, palpitations, dizziness and pain in my chest/back. The headaches are very debilitating. Sometimes the medication doesn't work. I do have a shortness of breath but that is not a major problem. The fatigue and dizziness are the worst. I lie down and sleep. It is the only thing that helps.

I have seen my pulmonologist once since I was discharged and he was very happy with my progress, I am seeing him again in 2 weeks. My embolism was huge and cut off the blood supply to both lungs almost entirely. The was a small portion of the left lung right at the top that was getting blood. That is all that kept me alive till I was thrombolysed some 13 hours after the clot hit.

My doctor said it will take two years to feel like I did before I had the clot and two months down the line I can truely believe that.

Thank you for writing this it has been most helpful in understanding the implications both long and short term. I am just going to continue resting and slowly building up my strength.

Steve 23 months ago

Thanks for you write-up on recovering from PEs. I sometimes feel very alone about everything that just happened to me a month ago. Your description of the PE process and treatment is EXACTLY what I just went through.

I have always tended to be busy and goal oriented with lots of daily tasks on my To Do list. I am finding that a month out from my PEs that, aside from the physical slowdowns you mentioned, my mental focus isn't yet what it was.

Thank you for the gift of this web site.

Bridget 23 months ago

Thank you for all the valuable information shared on this site. I too suffered from a DVT in R leg and a PE in ea lung. It is as many said, both mentally and physically exhausting. I am too experiencing some chest pressure, leg pain and anxiety. I had a baby 3mo ago via C-Section and was placed back on Yasmin Birthcontrol. They attribute these factors to the development of my clots. I am 33yr and in basically good shape, so this was a surprise. My R leg began to swell, hurt, and blanched red. Er admitted me for 4 days, dc with Lovenox and Coumadin. One Er visit since for SOB. So far EKG/ECHO wnl. INR levels have been hard to reach and maintain. 10 days out and have pulm appt on Tue. As said above psychological aspect of this is the worst. Praying and trying to be an advocate for my care while being optimistic about the outcomes. Nice to hear I am not alone. THanks to all who wrote comments and to you for creating this site. Bridget

Marie Woods - UK 22 months ago

Hi,

Thanks for your website. I suffered a PE after my c-section three months ago and I'm on Warfarin. I'm so paranoid that i will clot again. my inr level is 1.8 which should be 2.5 it's been a struggle to reach my therapeutic level. I'm worried about my leg - I have pains constantly since the PE and just tonight I have a small red patch above my knee. I've been to accident and emergency several times now I've had an ultrasound scan one month ago but revealed nothing. My question is If you are on warfarin but your levels are at the correct level can you clot again?

Amber Blecker 22 months ago

Thank you so much for your writings and support. I suffered bilateral PEs 4 days ago after a flight from the US to Australia, and was released from the hospital yesterday with little information about recovery other than when I would be able to fly again. When I got to my hotel and went out to take a short walk, was surprised how little I was able to do without getting winded and having my heart rate spike again. No one mentioned any of that to me. When it happened, it made logical sense to me, but it was very good to read the comments here to better understand that I'll just have to slow it down and expect some other changes ahead as my body heals.

As a lupus and fibromyalgia patient, I've spent the past 12 years learning not what I can't do, but instead how to make the best of what I can and to listen to my body and take care of it when it demands it. I'm going to view my PE the same way. Slow down, rest, take care of myself, but enjoy as much as I can.

Since I'm away from home, I'm remaining on low molecular weight heparin injections until I can return home and start warfarin treatment. I think I'm fortunate in that, as I can't imagine going through the initial phase of warfarin treatment - the testing, the constant adjustments, etc., in a strange city alone and in a hotel. Thankfully the docs took that into account and I have no problem injecting myself.

I appreciate everyone who shared here and brought me some comfort in my symptoms just being a part of the recovery process.

Stephanie P. 22 months ago

I so wish I would have found this article 3 weeks ago!! Thank you so much for taking the time to put this information out there. It has answered a lot of questions that have been on my mind, not to mention has helped me feel like I am not being a 'baby'. I was admitted to the hospital on March 15th, and was in for 5 days. I have clots in both of my lungs and developed pneumonia and my left lung collapsed. I feel very lucky to still be here!! But now that I am home, I have been trying too hard to get back to 'normal' and it's frustrating to me when I get worn out so easily and quickly.. but now after reading your article, I know that it's ok, and it's to be expected and that I just need to be patient. It was not just the 'common cold' as my doctor likes to put it.

Thank you again for this!!

Coleen 22 months ago

I was put in the hospital on March 18,2010 for only 1 nite with the discovery of a pe. I work at a hospital in the materials side so was somewhat familar with what was going with me. I have been very concerned since returning back to work only 4 hours a day my breathing has become worse and my headache never seems to go away! Reading these comments has helped me out so much I did not know what to expect recovery to be like and now I feel like I'm normal again with all the comments posted.

Lisa 22 months ago

Thanks so much for this. I have a large bilateral PE and have no idea why it happened as am fit, healthy mum of two littlies. Still have pain although have only been home a couple of weeks. I have headaches too and the dr thinks it is a sinus infection. I was told 4 weeks absolute bedrest and all I can think about it when i can exercise but i am so tired all the time.

Jay 21 months ago

Thank you again. There is so little on the web discussing what to expect when recovering from a PE. I just had my second PE, I am awaiting a hematology consult to find out why. The first was clearly (or presumably) provoked by an ankle surgery following a skiing injury. I had lung clots bilaterally, although I am not sure how extensive they were. I spend a day and half in the hospital and was put on a five or six day course of LMW Heparin (Lovenox) while my INR came up on Coumadin. Since I was recovering from an ankle fracture, my activity level was already low, but I returned to work the first day after discharge, albeit slightly SOB and wiped out -- but really without significant symptoms. My activity level picked up -- I'm an avid bicyclist, and I started riding as tolerated by my ankle, first on a trainer and then on the road. Coumadin makes you pay close attention in traffic.

Anyway, things were going well. I got off Coumadin after 3 months, and wham, PE number two. I had some ankle swelling after a hard ride, but no long plane flights, etc. It turned out to be a symptomless DVT behind my knee that threw a saddle embolus -- I assume a smaller one since I did not die or require heroic measures. In fact, my PFTs and pulse ox and BP all stayed within normal range. I was just way SOB and wiped out feeling. My PCP thought it was asthma -- but because of my history, he did a D-Dimer, which I flunked. Back to the ER, in to the CT (love the mechanical voice "breath"), in to the cardiac ward, more Lovenox, Coumadin. This just happened, so I'm still shooting up. This time around, though, I'm having a lot more residual chest pain and SOB -- and that feeling of dread that just makes things extra scary. I'm back on my feet, just very weak. As soon as my PCP says I'm not spewing clots, I'll be back on my bike, but I think it will take longer to recover this time around. It probably should, since it was a big clot. I anticipate a lifetime of Coumadin, which is the biggest bummer for me right now. It's that two strikes and you're out thing.

IMO, the hardest parts of recovery are emotional. First is the anxiety of self-service medicine: after discharge, you have to make the connection with the PCP (or find one), coagulation clinics, hematologists, pharmacies, health plans, etc. If you don't have a spouse, really good friend, etc., slugging over to the pharmacy to get your Lovenox and Coumadin is a chore (and expensive for something with no narcotic effect!) Everyone sees you for five minutes, and you never get the sense that anyone has a real plan (Maybe that will change for me when I see the hematologist). Second is the sense that you have a timebomb in your chest or calves or wherever and that every ache or pain is that last tick before the big explosion. Your article helps to calm those fears, which is really, really important.

Cassondra 21 months ago

I got my exactly on mothers day going on 2 years ago now. I have been overweight my whole life so I know that is, or could be, a reason I got PE but my grandmother died a few years ago due to blood clots so it could also be have genetic thing. When it really hit me I was in the process of loosing weight moved to a small town where there are no local fast foods. I was doing really good I could walk for an hour without my back hurting and stand for awhile before needing to sit down. But now i know I gained the weight back plus some. I took a breathing test and the doc said my lungs were just fine. It's hard for me to exercise get short of breath very quickly but that is probably due to my weight.

Your article gives me hope that I will make it through this. I am 28 yrs old and would like to have my life back and go to theme parks again like I use to. No matter what my mother says I am still young.

John 21 months ago

Thank you for starting this thread and to everyone for sharing their experiences. I am now three months past my PE and was worrying why I wasn't getting fit as fast as I had expected. I can now see that I am following the same path as a lot of other people and that there is nothing wrong with the slower recovery. I have even bought a puppy to encourage me to walk everyday. Good luck to everyone and keep the stories coming John UK

Carlo 21 months ago

Let me add my thank you to the chorus. This is very helpful.

I noticed you mentioned in your entry about stable patients who often are walk-in patients just getting bloodthinners vs. unstable "tending to" come in by ambulance and getting clotbusters. I thought I'd share a little of my experience, which is different. I walked in to the emergency room on my own - waaaay short of breath, true, and on my orders from my primary care doctor, but otherwise not feeling THAT bad. But by the time I had gone through the gamut of tests - the chest x-ray, the CT Scan, the ultrasound, the EKG, it was determined I was extremely unstable and wouldn't have made it if I had waited a couple more hours. In fact, as I laid in the Emergency Room over several hours, my breathing got consistently worse - from able to walk across a room to barely able to make it across a bathroom, to starting to have breathing problems just lying still. I had several large clots, including a saddle embolism (where it sits in that connector area between the lungs - I think). They tell me the saddle embolisms are the worst. They whisked me into surgery (if that's what that was) to administer clotbusters around midnight or so, which they do via a catheter running up a vein in your leg. Over the next couple of days, we had to that two more times. I was actually interested enough to watch the procedure on the camera by the third day - it wasn't that interesting, though. I had to be in ICU until they were done with the last procedure because they left the catheter sheath in my leg. I wasn't allowed to move my leg for 3 days! The ICU nursing staff was fabulous, though. Touch the button and they're there almost immediately, AND with a smile. As soon as they removed the sheath, they approved me to move out of ICU into the step-down unit.

I can tell you from the minute I got back to my room in ICU after the first clot-busting session, I was immediately breathing 100% easier. Almost 100% normal. After the 3rd session, I still had some tiny clots, but that procedure is risky enough they decided to let nature and Coumadin do its job. They released me after 6 days in the hospital. Another 4 days at home (my choice), and I went back to work.

I was in the Emergency Room with chest pains and shortness of breath this past week, so they ran the gamut of tests again. No new clots. Just should have been taking pain medication. So I keep walking the dogs and going to work every day, but I find a wall of exhaustion frequently and have to stop. I go to bed early, sleep late. I have other things I need to do, but I guess it will still be there when I get around to it.

Chris 21 months ago

Thanks so much for a helpful site! I was hospitalized with PE last week. To say the least I was shocked by this diagnosis. I went to ER with rib pain and thought the sob was due to the pain. When they said they were going to chk for blood clots in the lungs I thought that was far fetched! Boy, was I wrong. I have a large clot in my leg that they also discovered. On the blood thinners and am praying the existing clots dissolve on their own. Until reading this site, I was not aware that the pain would continue like this. That oddly gives me some comfort as I am still experiencing it and thought I would at least be some better.

Does the Coumadin create stomach upset for any of you? And can it add to the fatigue or is it only because of the PE?

Jo-Ann 21 months ago

I just came home from the hospital after a 15 day stay due to multiple bilateral pulmonary emboli. I was on bedrest with bathroom priviledges for the first week. Amazingly, even the respirologists didn't realize that my Autoimmune Hemolytic Anemia put me at a great risk for PE's, and my hematologist had not warned me about the risk. Not only did I have the PE's, but I ended up with pulmonary infarction and pulmonary effusion, which was extremely painful, so that I had to be on IV Morphine for the pain, as well as the IV Heparin and the oral Coumadin. Lots of fun. I am a 41 year old single mother of two kids, and it has been extremely hard to get back into life with them. I am so tired, and short of breath, and even sneezing causes excruciating pain in my right lung, which still has lots of fluid and dead tissue which has to heal. I will have to be on coumadin for the rest of my life due to the Autoimmune Hemolytic Anemia and the high risk of developing PE's again. My respirologist said that if I am still short of breath in 6 months to a year, it could be due to the clots not being dissolved, and I may have to have surgery to remove the clots from my lungs. I really hope that doesn't happen!

I agree that most people do not understand what a life-threatening ordeal having PE's is, and how long the recovery can be. Everyone tells me I look great, but I feel lousy. I know they are trying to be nice, but they don't understand that I feel like I beat the odds by surviving the PE's. My respirologist said that I was incredibly lucky to be alive, there were so many clots.

Yayi 21 months ago

Hi,

First, thanks for this site; I have been searching for a site telling about the healing and recovery 'after' PE and this one is the only one I have found.

The following is the Saga story of my Bilateral PE:

03/28/2010, Sunday - I slipped from my platform sandals walking to a neighbor’s birthday party. There was a lot of pain but it seemed there was nothing broken. I spent 2-3 hours in the party putting ice on my left foot for the pain. That night the pain increased, so next day I saw my doctor and the x-rays showed 3 small fractures on my left foot (not ankle). The podiatrist checked me, gave me a boot and sent home.

04/01/2010, Thursday - My left foot had a big bruise all around the left side and top. I started coughing and was spitting bloody mucus. The cough was really annoying.

04/04/2010, Sunday - High fever of 102.3 Went to hospital and diagnosis was shortness of breath and acute bronchitis.

04/16/2010, Friday - My left ankle, foot and toes were swollen but there was no increase in pain. The color was a bit on the red/purple side but not that much. The next day all was normal again.

04/26/2010, Monday - On my way home from work about 7:30pm, I felt some minor pain on my left breast and its base that increased if I lay down, so I slept maybe 3-4 hours sitting on my lazy boy chair. The pain was not so much and I really thought it was gas.

04/27/2010, Tuesday - I went to work still with the pain on my left breast. By 1:00pm the pain had increased a little so I talked with someone at work and she referred me to the Workmans Comp clinic which was 5 minutes away.

One co-worker took my car to drive me, but on the way to the WC clinic the pain suddenly Sky-Rocketed and what was 5 minutes commuting seemed to me like hours! When the WC clinic people saw me thru the door, they immediately called 911. Paramedics arrived almost immediately and took me to the closest ER where I was diagnosed with Bilateral Pulmonary Embolism.

By the time I arrived to the ER, the pain was all over my left side of the torso and every breath I took it was like a gigantic saw was cutting across it. Breathing was almost impossible! After diagnosis, they gave me demerol for the pain, injected in my belly anti-coagulants and gave me other oral medications, in addition to oxygen supply.

I spent 5 days in ICU and 5 more in a semi. All this time I had to sleep at an angle because being flat on my back was too painful. I was able to sleep on my right side on my 7th day. I had chest x-rays every day, a ton of blood tests and my arms were the proverbial black and blue from the needles (I have small veins).

Every single doctor, specialist and nurse I met told me how lucky I was since my PE was on both lungs arteries where my left lung was completely clotted and my right lung had only a "trickle" of blood going thru. They say me being alive was short of a miracle!

05/07/2010, Friday - I was discharged from the hospital with orders to follow up with my PCP, rest for at least 2 weeks, have another INR test at 72 hours and keep the coumedin treatment and blood check ups for at least 6 months.

Today (05/20/2010) 2 weeks after my discharge, I still have some of the symptoms that come and go (fatigue, left side pain, sudden cut off of my breathing, cough, etc.) and I still have to sleep at an angle (and not at all on my left side). I was starting to worry until I found this site. Now I feel better since it seems this is part of the recovery path from PE.

I do want to note the reason why I give a detail history of my PE trauma. During my PE research, I have found out that all the symptoms I had prior to the PE full attack are consistent with onset of PE. Persistent coughing, bloody mucus, shortness of breath, swollen bruise areas and such are all hints that clotting may be developing.

In my case, all these symptoms came and went at different times thru a time span of 4 weeks until finally the PE attack fully appeared. I never new or was told to watch for any of these symptoms, and I never worried because they came and went. The only persistent symptom throughout the 4 weeks was the annoying cough which kept me wondering why it wasn't going away.

I also found out that PE is difficult to be diagnosed being this the main reason of most fatalities. I just hope that anyone that reads my story is made aware to watch for any symptom out of the ordinary and consult the PCP promptly, mostly if there has been any type of trauma such as a bone fracture.

Roger 20 months ago

Thanks very much for writing this all up. It has been very helpful for me.

I have been puzzled by my lack of energy and a feeling of sadness. It is good to know that this a normal part of the recovery process. Just that knowledge alone will help me to buck up and do what it takes to recover.

kim 20 months ago

i am so glad i found this. Came back from overseas holiday 17th may 2010 and by the 20th may had terrible pain down right side of body and whenever i breathed pain in chest so i admitted myself by walking into emergency as no doctors had appointments that day.

I am so glad i did as after blood tests and chest x rays and a ct scan - what i at first believed may have been a really bad muscular strain turned out to be a pulmonary embolism on my lung..to say i was shocked and scared would have been an understatement.My partner came as soon as he could and as he is a straight talker asked if i could die - doctor said "we all die some day , if it is really bad then it is a possibility"

Well i spent the next 5 days in hospital - same as most of the rest of you , blood tests daily and injections as well as painkillers and warfarin....on the 6th day i was told i could go home (don't get me wrong i was glad to be going ) but at the same time my inr was 1.2 and i had to get it up to 2.3? as well as monitor my pain with the other 5 painkillers i was on and then get my dosage of Warfarin too...just felt anxious about the whole thing really.

Luckily i have nurses to come and help me raise that inr as they have to inject me every day and take blood to ensure my dosage is correct , but hey two days in - 1st day nurse is an hour late , and today my nurse doesn't bring any equipment to take my blood with and i get sent to the local community clinic to get this done!!! I was annoyed beyond belief - i feel that i have this ailment which i feel is very serious but that everyone that is supposed to be my support network/liason with hospital treat it as blase...so in turn i get more anxious because they cant get here within an allotted 3 hour period and dont even call to let me know!

maybe i am just over exagerating but my life is important to me - even more so now.

As you say there is nothing on recovery one person told me rest up until the inr is level , another is saying oh no go back to work and i feel that i am not even ready to think about work yet - my job is fairly physical in nature so i certainly dont want to push myself too soon.

your comments are great and have made me feel like i am not alone out there ..thank you so so much

Greg 20 months ago

Thanks for information, it was very informative and interesting reading. To give my story, I started having back pain (felt like a pulled muscle) a little over a week ago. As the pain increased over the next 24 hours I just assume it was sore muscles but conflicting symptoms made me suspect a PE. It was so bad I couldn't lay on my back, I had to sleed on my side. I finally went to a Dr. and told him I suspect a PE and after checking me out he send me for a CAT scan with and without contrast but he didn't think it was a PE. 1 Hour later I got a frantic call telling me I had bilateral PE and should be hospitalize. By this time my symptoms had eased off and the pain killers where dulling the pain so I opted to handle it out-patient. Mine you this was against the Dr's advice. Since my wife is a nurse, we got the levenox injections and she gave them to me twice a day and I took oral Coumadin to get my clotting factors above 2.5 So far this has been working, my factors have gone up and my pain has gone away to the point that I have stopped taking the pain killers.

I even went back to work after getting my first shot...

It seems my experience is not very typical considering all the long hospital stays others have had to go through. Other then fatigue I haven't had any other symptoms.

Now reading this all of you have scared the crap out of me! (GRIN)

We still have to figure out where the clots came from. I guess that is what I get to do next week.

Thanks for listening.

Ashley_smith18 20 months ago

Hey thanks for this write up its been very helpful I am just freshly home from 3 weeks in the hospital with multiple PE in both lungs. its like you said though its good to be home but i am feeling so run down still in a lot of pain n short of breath but its about the same as when I was in hospital. But i dunno when its something to worry about or just recovery and I really dont want to go back. I have to do daily trips to the hospital to get blood taken cause my INR is so up and down they just dont know I have a hemotologist n she did a whole bunch of blood work. The thing that is bothering me the most is im very sore my back, my ribs, my shoulders my chest but they are very sensitive to the touch and it keeping me from sleeping I am up all night and have a hard time lying flat even when i prop myself up im still having a hard time breathing and pain.....got any suggestions? would be great :)

Joe B. 20 months ago

Hi I had a tumor removed out of right tmporal lobe in feb 2010 went well did my 6 weeks of radiation and temodar for cemo .then on june 4th ended up having to go to emergency room couldnt catch breath legs were swollen could form like a clump of clay right rib felt like broken rib because Ive had one before, stabbing pain had to sit and do pursed breathing leaning over a chair . It was almost uncontrollable . I actually called ambulance and got to hospital . They give me diladin for pain to calm me down .oxygen level was dwon to 84 and blood pressure was erradict . Anyway they did all the test ct scan and ultasound and leg was full of clots . They told me I had to have shots of blood thinner and recommended surgery to put a filter in so I let them . Im on only 2.5 mg at 9pm at night actually he has got me splitting this tablet so only hafl of the 2,5 mg. Im on other stuff for the brain tumor thing such as antconvulsion meds kepprs and dexamethasone he takes my blood every 3rd day right now leg is back to normal . but still have pain in right side and tightness in chest waiting for ct scan to come back tommorow . to copare with on week ago .I thought all pain would be gone they give me methodone for pain aas oxycoton was not workinf to well . Although I have not had to take any the last 4 days . even though still painful not uncontrolable . Gld I found this site . Im 54 ol fella and have to start up manince cemo for 6 months in 3 weeks so hopefully everything will go well.everyone take care .

Happy2Balivestill 19 months ago

Yes thank you for writing this. I had large, multiple, bi lateral PEs last July 15th 2009. Have been on wafarin since then. It has been a year because I had to have abdominal surgery in Nov 2009 so they wanted me theraputic long enough to be sure. I am supposed to come of the thinners in less than 30 days. I as well am heterozygous for Leiden Factor V. I am happy but nervous as well. Can you talk a bit about how they took you off them? Was it gradual? How did you add green leafies back in? I also saw you spoke of reflux. Was this prior to PE's or only after? Still continuing now that been off meds? I have had horrible reflux and on meds twice a day for the reflux. Thank you so much in advance for the info. Glad to know there are others out there who are lucky and happy to be alive. It's only been a year but I still wake up every day grateful to simply be breathing!

Melissa 19 months ago

Thanks for all of your comments. I had abdominal surgery and had some swelling in my right leg but did not think anything of it and it went away after about a week. Little did I know the blood clot had broken off and traveled to my lung. I started to have pain on my left side but thought I had pulled a muscle so I just tried to deal with it for 2 days. It finally got so bad that even with muscle relaxers and vicadin I could barely take a breath without the pain. Thankfully my husband talked me into going to the ER. They told me that I had nultiple clots in both lungs. A PE on the right and a pulmanry infarction on the left. The dr's and nurses could not believe that I walked into the ER. They said that had I not come in they do not think I would have made it through the night. I am a 37 year old woman with 2 young kids and I could not believe that something like this could happen. I was in the hospital for 7 days and am now taking wafarin every day. I really feel pretty good and my doctor said that as long as I take my medicine and get my blood checked when he tells me to the chances of having another PE would be very rare. That made me feel a lot better. It definately makes me appreciate life so much and truly puts into focus what is really important.

Roger 19 months ago

I am a little further along with my recovery now, so I can say more about it.

First, the event itself. I had severe pain and called my doctor. She told me she could see me in four days. Later that evening the pain was so bad that I went to after hours care at the hospital. They prescribed pain killers and asked me to get a CT scan and blood test on the way out. The CT scan showed three pulmonary embolisms! At that point, they told me to walk over to the Emergency Room, pronto.

I suspect that my description of my pain was not taken seriously at first because I described it as an 8 on a scale of 1-10. Big mistake. I think the trick is to scream 10! at the top of your lungs from the beginning. "The squeaky wheel gets the grease."

Recovery: I am sure that everybody is different but here is my experience. I went through about 4 weeks of feeling tired all the time. After that, I started feeling a lot better. I have tried to do something aerobic nearly every day since, even if it is just a brisk 45 minute walk. The result is that while I am still not at 100% of my previous cardio-vascular capabilities, I am getting better quickly and feeling much better.

The big decision has been whether or not to stay on coumadin for life. I had all the tests run and nothing in particular showed up as a cause of the three embolisms. I guess that is a good thing because some of the possible causes can be pretty scary stuff. The question for me was: if there was no obvious cause, was it necessary to stay on coumadin?

My hemotologist says that since the embolisms presented themselves at three at once, I am 4-8X more likely to have another embolism.

In any event, I am on coumadin for a year to get over what has happened. At the end of that time, I will make a decision about whether to continue or not. I will see how onerous living with coumadin is, but I am leaning towards continuing with it -- that is after initially being pretty skeptical.

As I talk to other people, I find that a lot more people than I ever imagined are on warfarin/coumadin. The trick is to maintain a steady level of vitamin K. I typically eat a fair amount of food that has vitamin K, but I have not found it too hard to keep the level fairly constant. It does not seem to be a big deal.

annieisok 19 months ago

GOD BLESS YOU ALL!!! Thanks for putting my mind at ease. I am 40 and on May 19, 2010 I was hospitalized for 5 days with bilateral pulmonary embolisms. Began as shortness of breath on a friday, truly winded by sunday, sharp stabbing pain under left breast by tuesday. But I chalked it up to having asthma, pollen season, congestion maybe I have walking pneumonia. By Wednesday I couldn't take the deep breath to take inhaler and decided after work I will see my dr. Dr. sent me to a Wellness center for ct with contrast that just happened to have and ER. Dr. told me be sure and wait for results. 30 mins later "Ma'am, we need you to step over to the ER dept." ?????????? What's going on? They inform me that I need to be hospitalized and they are calling me an ambulance for transport and which is my preferred hospital? Hospitalized for what???? You have bilateral pulmonary embolisms that require immediate attention. I say OK, how long will it be for the ambulance? They inform me about 30 mins. My response, not truly grasping the magnitude of everything, well hell, my cars outside I can be there quicker than that. And it was the nurses facial reaction when I finally realized I was in trouble. She said- bilateral which means both or two she said pulmonary which means my lungs

she said embolism isnt that clots. Oh dear Lord in heaven, why did I wait so long. They began Heparin drip then. EMT's arrived they read chart and whispered "is she breathing" and I said I can hear you. If that wasn't enough of a wakeup call, got to the hospital and was placed on the geriatric unit due to renovations. On my last day if someone really wasnt trying to tell me something then why was a 42 yr old woman placed in my rm who had a PE with stints put in March got real ill in April called for help Fire dept. told her she had the flu left her. she placed another 911 call only to have had a clot travel to her brain and is learning to walk and use her hands again. So the shortness of breath I have, the pain that I feel, the headaches, the fatigue, the tension in my neck from struggling to breath I will take it and say THANK YOU I am still here. What doesn't kill us just makes us stronger. I still cry every now and then because I dont know if I am going forwards or backwards sometimes. But after reading all of your wonderful posts I believe I am headed in the right direction. It is all in the course of healing.

leoism101 19 months ago

Hello all & thank you for creating this informative page!

My daughter was 20 when she was finally diagnosed with multiple PE's in both lungs,near pulmonary artery with infarction's. It is now 2.5 years later and we are looking for answers and a pain free life for her.

The hospital was a nightmare, so I will save you those details. She was on a blood thinners study drug (pill) for 3-4 months after being diagnosed. Then her gall bladder was removed. We were told it would take a year before she felt "normal". Now 2.5 yrs later she still had intense chest pain, shortness of breath, easily tired with any physical activity, frequent migraines, bruises VERY easily, this has all lead to depression as no one can provide any answers. Her primary Dr thinks its pulmonary hypertension, the pulmonologist thought it was lung disease, then hypertension (but no testing done specifically for it), exercise induced asthma and now he says it's either her weight or an unexplained pain she will have to live with. We are now looking for a pulmonologist that specializes in hypertension only 23 of 430 w/in 30 miles of us). A friend found that PE's can cause, or bring on Lupus, so I will get her tested for that as symptoms are similar. I just wanted to see if there is anyone in a similar boat?? It kills me to see my daughter in pain, potential of loosing her job as the Dr will not limit her duties without having a diagnosis, I mean, she cannot even take the dog for a walk! I would really appreciate any help! I am not looking for sympathy, but answers.

May you all have a happy and safe holiday weekend!

xikum 19 months ago

Thank you sooo much for having this site!! I am nearly 1 year (July 9th) post total knee and resultant PE, one relatively small one in one area, and lots ot little, tiny ones throughout both lungs. Fatigue and shortness of breath are the 2 things that I am still dealing with - I am so utterly frustrated and tired of simply getting tired so easily, and no one of the doctors said anything about it being like this. I was wondering what kind of wimp I was, what was wrong with me that I feel this way... It is a godsend to find that this is normal for so many people after PEs, and also when taking warfarin. I was on that for the first 6 months only, and was so totally drained, it was all I could do to get through work and come home to collapse in bed. Now, I am doing things around the house, but just so little, seems to take so much effort and tires me out unreasonably, but after rest I can go back to do more, just not so productive as before.

I so wish I had found this site earlier. What a relief to read! I am so grateful to find it now - I can see it is OK to just accept myself and continue to work on slowly building my endurance.

Dr Najib Nabulsi 19 months ago

Really I enjoyed this comprehensive valuable medical presentation....it was so useful to me as a recent patient.Actually, I'm a 55 year old male, weight=115 kg,hight=190 cm, a consultant Physiatrist( a physician in physical mediicne and rehabiltation for the last 10 years), I never smoke in my life and I didn't drink alcohol..On the 10th June around 6 30 am, I presented to ER at the hospital where I'm working, and I talked to my ER colleagues that I have DVT at my left leg, so please call our radiologist immediately for urgent dopplar Ultrasound , they said OK, BUT I called him via my mobile as he was living next door, he came within 10 mints, the ER nurse said; would u like to go walking or on a wheelchair to Radiology as they are waiting for you there,I said please push me while on ER examination bed to Radiology, there, they did the Dopplar US , EXTENSIVE DVT at left lower limb was reported...Immmediately, I was admitted under internal medicine consultant who started me on CLEXAN 100 MG TWICE DAILLY,heamatologist and vascular surgeon were consulted. Next daY they did blood tests and pelvis, abdomen and chest CT WITH CONTRAST...it showed patent common femoralvein thrombus, iliac vein was free, but there were two patent pulmonary embolisms. Blood tests showed positive didimer and factor five leiden and moderately elevated homocystein.Cardiac Echoo was normal.On the second day of admission, the vascular surgeon suggested an invasive interventional procedure; temporay filter fitting and catheter introduction to do thrombolytic therapy for DVT at left leg,this procedure wasto performed by an interventional radiologist, I refused to go with...and I choosed to go with traditional medical treatment.I stayed at hospital for a week until my INR 2.8; as they stated me on warfarin on 3rd day of clexan.They gave me 2 weeks sick leave. First few days at home, I used to have left below knee pain mostly when standing up, now pain much less, but still at home and dong very short shopping at near by mini mall.Sure, just before stepping out of bed I PUT MY BELOW KNEE ELASTIC STOCKINGS.

My questions: did I took the right dicision on refusing the thrombolytic therapy?

when I can resume exercising, as my PE was A SYMPTOMATIC,AND what kind of exercise Ican resume? swimming? walking?aerobics?

For warfarin, they said to be on for 2 years, other authoraties adviced for life so what do u think?

I hope u r doing well now and I'm so happy to share my recent experience with you..

Dr Najib Walid Nabulsi 19 months ago

Thank you for your comments, I think what pushed me to reject the thrombolytic therapy are tow reasons; first the probability of bleeding and the availabilitiy of skilled hands ( I mean a question should be raised to interventional radiologist; how many thrombolytic therapy procedures you are doing a week? a month?

For activities, I have just started easy swimming last Thursday.....

Anthor question; is it true that Pulmonary embolism associated with factor 5 leiden could occur again any time with no precipitating reasons like sitting for long time ( driving or long distant flight),although I'm on Warfarin(comodin) and INR is constantly 2.3

Jill 19 months ago

I find it amazing how many people have had PEs... it seemed so foreign to me when I was diagnosed in January. I had bilateral PE and was in hospital for 5 days. I did Lovenox for a week at home, then Coumadin for 6 months. I have been off coumadin for about one month and love that I am off of it, as I hated the side effects. However, I am trying to decide if I should call my dr regarding a pain in my left chest, below my breast, approximately where the pain was initially. I do not have SOB, but the pain is rather a dull ache that started a few weeks ago, and I really noticed it while flying this weekend. Is it a normal, residual side effect, or is it something I need to alert the dr about? I do not want to appear paranoid and like a hypochondriac... maybe its nothing. Have others had this pain once off coumadin, and what is it?

najib nabulsi 18 months ago

2 weeks ago I adviced my daughter ; who is recently got married and she planning to be pregnant , to do blood test for Factor 5 leiden as far as I already has it. She called me last week with a positive pregnancy test result. She put me on line with the lab tech to ask for factor 5 leiden. 2 days later she called me with tears; dad the result for factor 5 leiden is positive. I called my hematologist and he adviced to start her on daily BABY ASPRIN, and CLEXAN 20 MG SUBCUT FOR THE FIRST 3 MONTHS , THEN TO BE 40 MG TILL THE END OF PREGNANCY, this will make pregnancy safe and successful.

Anyhow she will see her obstitrecian and discuss the issue with him.

Samantha  18 months ago

Thank you so much for setting up this website. Its been a god-send to me. I have just got out of hospital after 3 weeks (3 days in ER) after suffering several PEs, pluresy, pneumonia and water on the lung (apparently all normal with a PE). All this came out of the blue with no previous warning, no DVT was found, I don´t take oral contraceptives, don´t smoke, am very fit (I lived in the gym until this happened). Whilst the treatment has been first class during my hospitalisation, I found all the pulmonary doctors I´ve been seeing, really are very much in the dark about recovery symptoms and recovery times. I am suffering fatigue to the point of feeling flu-like, I am still experiencing terrific stabbing pains in my chest sometimes in my left side (which was worst affected) and in my heart (which luckily has shown no signs of being affected), but worst of all I still have difficulty breathing and a feeling of bubbling deep inside my left lung which only I can hear/feel. The breathlessness and coughing up mucus (clear) doesn´t seem to be going away despite all my deep breathing exercises. I find I can´t talk sometimes (devastating for me) and I certainly can´t talk and climb the stairs at the same time. I realise its early days but its so frustrating and scary. I keep going back to the hospital for checks but they say everything is looking good and that I have 80% of my lung capacity back (90% onwards is what they are aiming for). I know I am lucky to be alive but I am scared I might be stuck with this "gasping for air" for the rest of my life. (ok, its a small price to pay I suppose in the light of what could have been) but still....The doctor offered me an asthma spray but I am allergic to salbutymol (apparently this is rare) so as all sprays are based on this I can´t have anything. I have been on Marcumar (warferin) for the last 15 days and have had a period for that long too!! (pneumologist said that´s not normal so this means another trip to another doctor). I feel a mess but so glad to have found this website. Thank you again so much.

Yayi 18 months ago

Hello, everyone.

I can see there are even more people accessing this site, which I personally think is God-sent! Thanks very much to all for your input and support.

It is been two months since I wrote about my experience. I was getting much better until the week before the 4th of July when the pain on my left lung started again (from under my left breast all the way thru the back). Now it almost feels as it was after I left the hospital with the strong pain and shortness of breath.

I went to the Dr and he gave me some anti-inflammatory gel to massage and a ct scan. I have an appointment for the ct scan results next week. The gel was helping with the pain but I had to stop it because an inch bruise spot appear which scared me! It just happens the only place I get a bruise is exactly on the area I am putting a gel over the lung I had the infarction!?!? I only hope this is only paranoia.

The thing is I have no idea why the pain and rest came back! I still did have some symptoms prior, but I really thought I was recuperating; the symptoms were bearable with some minor spikes now and then. What did I do? Shouldn’t I be going forward instead of backwards? Or at least be stable? I am taking the warfarin daily and the monthly INR is 2.2 Has anyone have this happened where the symptoms came back with no apparent reason?

I appreciate any input. Again, thanks everyone for the support of this site.

rosanne 18 months ago

I'm so glad that I found this site.I fractured my left tibia at work on Feb 17, 2010.This was not diagnosed for 10 days because workmans comp was in charge of making appts for me. Turns out I had severe bruising in the bones of my knee,a tear of my miniscus and a fractured tibia(plateau).I was told to wear a knee immobilizer at all times when I wasnt in bed or bathing.About a week later I asked the ortho why my leg was so cold and he replied it had nothing to do with the fracture.I was sent back to work the next day in a wheel chair and wearing the immobilizer for 8 hour shifts.By the end of the week my calf was hard, swollen and very painful.Two days later I went back to work with the same discomfort in my calf but also short of breath.The next day I went to the ER by my orthos advice.I had a dvt in my leg.I was admitted and put on heperin and released 4 days later.I gave myself Lovinox injections twice daily and was taking coumadin.A few days later I felt a sensation in my heart that felt like it dropped and immediately my heart was beating very fast and I was short of breath.I went to the ER where I waited 45 mins before someone decided they had better take my blood pressure and pulse rate and took me right away.The ER doctor on duty said he really didnt think it had anything to do with the recent dvt and that it was probably an anxiety attack.They finally gave me a medication that stopped my heart so it could start beating at more more normally.It had been at 180bpm.It turns out I had thrown a large clot that went through my heart.The labs reported that my results were nontherapuetic and I was admitted and put on arixtra and had a vena cava filter put in and was released 5 days later.4 days after being home and really feeling lousy I realized I had pain in my groin and was rehospitalized for what was thought to be an infection in a lymph node.The lymph node was removed.I was released the 2 days later with a fever and feeling sick.The hospitalist said he didn't want anything else to happen so I should go home.2 days later there was redness,swelling,fever and the incission site was leaking.I went back to the ER at the advice of the surgeon who removed the lymph node.I was readmitted with a bad infection in the tissue.I was put on a cocktail of three antibiotics.After 3 more weeks at home on antibiotics, pain killers and arixtra the surgeon began debriding my incission over 4 weekly visits.It was determined that the infection was caused due to the placement of the vena cava filter.The groin area did heal nicely and the pt has helped somewhat but the heart palpitations and angina and high blood pressure continue even with medications to treat them.I will be on a blood thinner for the rest of my lifeand the filter will stay in permanantly.I still have to have surgery for the torn miniscus and will have to be off of the blood thinner for a short time.Like everyone else, I tire easily and I know I'm much better than I was but I am a totally different person now.I can't imagine ever being able to accomplish a whole days work.

Tony 18 months ago

Hello to you all,

Just arrived home from hospital after being on my back for 8 days with a DVT above the knee and pulminary embolisms in both lungs.

My problem is hereditary, having started with my grandfather, then to my mother, then to me and now my daughter.

My daughter has also just been discharged from hospital with PE's. Hard to believe I know, but that's our family - always trying to outdo the others! We phoned each other from our respective hospitals and swapped notes.

I train very heavily in the gym and in martial arts and it is not uncommon for me to run 20 km's per week, along with heavy weight sessions etc etc. Obviously DVT's and PE's don't discriminate!

We are about to see a blood specialist to sort things out, so I will post a further comment as soon as this occurs.

Jasmine 17 months ago

Hello I had a myomectomy 5 years ago and the day after the nurse noticed that I was breathing fast and my pulse was racing. I was up walking around and I figured that was the reason but nope I had PE. I had no idea how serious it was but I am so glad that the nurses paid attention to me and that saved my life. I am now struggling with breathing issues. I thought it was asthma but the tests didnt show anything. Now because of you, I realize that is has to be from the PE that I had. I was on warfarin for 9 or 10 months. It was so scary after I left the hospital a week after my surgery. Fear of bleeding too much, of throwing a clot again...I was so scared but I made it through. There isn't a lot about this and it is scary because people don't know what to expect. I have to say that at my 6 week check up with my OBGYN he told me that a man that had surgery the same day as me died of his PE. God was looking out for me. Thank you for this information. Thank you so much.

Samantha 17 months ago

Many thanks for your response to my previous comments 2 weeks ago. It has been a great help. I was readmitted to hospital this past week because my throat felt like it was closing up and pulsating. I felt I wasn´t getting any air and I had pain in my heart and trachea. After checking for more PEs, which luckily they didn´t find, I had to have a gastroscopy and was told I had laryingitis! (They also managed to break my little finger when they wheeled me back to my room- more pain!) On the basis of your remarks I have now made an apt with my ENT and will tell him about VCD.

I am now at home again trying to find reasons why this happened so it won´t happen again. The only thing I can come up with was 2 weeks before I had the PEs attack, I damaged my knees up in the gym. When I went to the orthopaedic doctor, I was told I had worn down cartilage and it was nothing serious, despite the swelling. Following a CT, it now transpires I have completely ripped through the miniscus in both knees. (Having read Rosanne´s entry I wonder now if this caused the PEs, together with a long car journey from Germany to England.

I am feeling so sorry for myself at the moment and panic at the slightest twinge, its awful. I guess the pyschological bit has now caught me up because until recently it was all like a film or a TV medical soap!

I also want to exercise but its not easy with painful knees, throat, lungs, heart and now the finger. I tried doing gentle pilates but found I can´t lie down flat because my heart area starts hurting (although no damage was found). It also means I can only sleep in a slanted or sitting position. All this since the PEs. Maybe I should go into hybernation for a year!

Your website, though, has been a god-send and so reassuring. I realise that I am not alone and that my symptoms are on a par with everyone else (but so sorry to see so many of us going through it). Still, as you so rightly point out, life does go on and it does get better. Thank you again so much for all the support. and info.

Samantha 17 months ago

PS. I also had a really heavy period which lasted 20 days due to the Marcumar (warfarin) tablets. A tip for all others who may have this problem, my gynocologist advised putting an ice pack on my lower abdomen (wrapped in a cloth). I did this and the bleeding stopped immediately!

He did say though that its not a good idea if you have cramps because cold makes it worse.

Lena 17 months ago

I am 4 months past my PE discovery. Have been on Coumadin since April 28, 2010. I have really good days but then get struck down for a week or two. Chest pains, shortness or breath, joint, bone and muscle pain. I have tried light work outs at the gym - I used to go to the gym 4-6 times a week and NEVER even thought I wouldn't get to or struggle with a very light workout.

I was put on Seasonique for having out of control periods every 2 weeks. 70 days later, I am hospitalized with blood clots throughout my body and several in my lungs. My periods have come back and yes, the coumadin makes them a little worse.

Don't use a heating pad or ice pack for pain... both affect this condition.

I am glad you wrote this. I just want my life back. I want to go hiking with my son and dog. I want to fly to visit my daughter at college. I want to have my brain not be clouded and actually perform at my best at work. I only took 3 weeks off... they wanted me to file temp disability... but as a single mom, you do what you have to and I have to work.

Good luck to everyone who suffers from this.

JLB 17 months ago

Thank you so much for the sharing, it is the best site with information re PE I read so far. It tells me a lot about the recovery process which is the information I am searching for. I wonder whether you know anything about how fast the patient can take flight again after PE. All the best to your recovery.

Ian T 17 months ago

While I don't get pleasure from the discomfort of others, I do enjoy hearing the stories of others who are going through what I am. I'm happy for you for all the ways you are managing with what has happened. It gives me, and I'm sure many other PE survivors hope. I am now 15 months out from my PE. I'm still on warfarin therapy, and have had strong chest pain return on a few occasions since my initial diagnosis. I try to work through my symptoms logically, and I find this helps me cope the best. If I just get a cramp, but I'm still breathing fine, my pulse isn't racing, and I otherwise feel ok, than I've learned to just tough it out. Good or bad, I've been to the ER about 10 times since, and I need to stop.

carole p 17 months ago

My husband was diagnosed with PE one month ago. This was 4 days after a diagnoses of stomach cancer. The stomach cancer is on hold because of the PE. One liter of light orange fluid was removed from one lung-no cancer cells. He sleeps alot but I have him walk through the house a short way once every hour. He had a filter put in to stop further clots coming from the legs. It has been a real nightmare and a gigantic roller coaster ride. My husband is 78. I pray alot.

Denise Passmore 17 months ago

I have been out of the hospital for 2 weeks and plan to start back to work next week parttime. I have breast cancer and the clots were related to the cancer. I am very fearful of doing anything and do not feel that anyone gave me good information about what I should do to get well. This spot has contained the best information I have found and I think all of you who have posted. I am currently on chemo so it is sometimes difficult to figure out what is chemo related and what is from the PEs.

Denise

Danielle 17 months ago

Thank you so much for writing this article. I continue to try to educate myself following my recent diagnosis with a PE following a DVT in my leg. I feel like the Doctors left me completely in the dark!

I am now 3 weeks post PE. I went to A and E at 4am and released at 7pm on the same day with my heparin injections. I was back at work a day later. I was given no advice on bed rest or excersize. No scans of my legs so I do not know whether I still have any clots that may be dislodged although I had to go for an ultra sound to check I had nothing that could cause pressure against my abdominal blood supply.

I am getting married abroad in 3 weeks (only a 2 hour flight so I am told this is ok?) but I have stopped working out and feel like all the hard work I put into loosing weight for the wedding is lost and I am wondering whether I should be putting off our honeymoon which is scheduled for December and which means a 10 hour flight.

My greatest concern is having children. We were planning on starting a family in the new year. We have been looking forward to this for 3 years now and now I am going to have to wait till the treatment is over sometime in March, then another 6 weeks for the warfarin to leave my system, and even then I am worried whether it is safe. It just seems to be the worse possible timing! I noticed you said "when" you have children...and now you are 2 years post treatment. I don't suppose you've since been pregnant or have received any more advice on pregnancy?

Thanks again.

Danielle

Scott 17 months ago

I too greatly appreciate this site. This is my 2 month anniversary from when I suffered an acute PE with small infarction. I felt sore in my left shoulder for most of the day and did some yard work. Afterwards, I was extremely tired and took a midday nap for over 2 hours (very rare) and when I woke up began to cough up small amounts of blood. I called the nurse and had an appointment made for 3 days later. I woke up later that same night in severe 10 pain at 1:00am after sleeping on the side that wasn't feeling the pain. Sleeping on my bad side or back was way too painful. I drove myself into the ER and after 4 hours and a CT scan with liquid, they diagnosed me with bruised ribs even though I didn't have any traumatic experience, gave me some Hydrocodene and sent me home. I didn't feel good, but at least the pain reduced down to a 7-8 and by the next day after some sleep was a 5.

I made it to my doctor's appointment and was still coughing up some small amounts of blood contiously. The doctor ordered a CT scan with dye and made me do it that day. They then found the PE and immediately sent me to the hospital for the next 2 days. I had the blood tests run first, then the shots of Lovenox and Warfarin pills before they sent me home once they say my blood/ox was 97% or better and I was at a good INR level.

Two months later, I've come off the hydrocodene and am experiencing consistent pain in my left chest. After reading this article, I realize it is quite common to be feeling this way. I also experience anxiety, depression, and nausea. About a month after the PE, my wife gave birth to our second child. At times, I feel very overwhelmed at taking care of our children. I've really been touched by all the comments on this site and realize now just how lucky I am to be alive and be able to care for my children and my family.

How have other people who have a PE dealt with taking care of small children?

Ronald 17 months ago

I am thankful I found this site. I am, was, and will be again, a healthy 43 year old with endless energy. One week ago on this night I drove myself and my wife to the ermergency room. While sitting on the couch, watching tv, my left shoulder began to throb. The pain kept increasing to the point it was affecing my breathing. I began stretching thinking I might have injured it somehow. When I laid on my back the pain intensified. If I took a deep breath I could feel pain in my chest, abdomen shoulder and back. My intuition has always been strong in regards to my body. I used to train for years as a cyclist. Of course the idea of going to the hospital seemed silly for a sore shoulder that could be attributed to anything. I even called two of my friends to get their opinions. Still, not convinced, I began searching for answers on the internet. What I found scared the crap out of me... literally. It would be my last visit for that endeavor for 5 days. I told my wife that something isn't right so we got in the car and left. In the emergency room they discovered that my ekg was slightly abnormal but maybe, for me, that was normal. I could hear the doctors discussing my case. I'll never forget it. One doctor said that he is 99% sure it is nothing but he did not want to be 1% wrong. Off to the CT I went. By this time I was receiving oxygen, a drip, blood tests, xray, nitroglycerin and morphine. I was still joking the entire time and that I was wasting everyone's time. I actually felt embarrassed. One of the nurses came in and said they were getting a room ready for me. I asked how the CT turned out. He said not good. You have pulmonary embolism. There are multiple clots in both lungs.

The realizaton: Act 1 - Tragedy. The emotions I concealed were horrific. My first few hours in my new room were, what I would describe, terrifying. I had just been given morphine and started falling asleep around 6am. At 6:20 my shoulder pain hit with a veangence. I hit the nurse button and waited 10 minutes and hit it again. I was nice the first time. This time I said in very general terms that my pain is going to cause problems for more than just me if you don't get someone in here. Soon there were two nurses that helped me sit up on the side of the bed. I was shaking and my breathing became intense and labored. I felt like I was having a panic attack. I've never had one before but it is the closest thing I can compare it too. More morphine came and I eventually fell asleep for 20 minutes before all the tests began.

The next day consisted of ultrasounds of heart and legs. Both of which were clean and healthy. Thank God. The usual treatments along with antibiotics became the norm.

On day 3 a new nurse asked if I had been exercising? I didn't know I was suppose to. How strange? So, I got out of bed and began walking. After 5 laps (600 feet per lap) the nurse stopped me and said your heart rate is ok but don't push it. After the next lap she pulled my aside and took me back to the room. I would have kept going until I passed out. I was determined to not let this get me.

Hope: Act Two - Determination On day 5 I felt like exercising. During my previous walk my wife joined me. This time I asked her to wait for me. I had a tempo in mind and a number to get to. I began walking in the usual clockwise route of the floor. My tempo for the first couple of laps were moderately brisk. Laps 3 thru 15 were very brisk. Each lap I would pass by nurses, doctors and one or two patients. I would hear coments like, why are you here... go home... way to go... how far are you going? After 15 laps I slowed way down for my 5 remaining cool down laps. After 2.25 miles I thought what a fantastic accomplishment for me. I was released that evening.

Act Three: Doubt It was so nice to get to familiar settings. I had a laundry list of items to take care of. My list of meds to get filled were rediculous! The next day I slept in. After all I am supposed to be getting rest. Instead I entered a world of chaos trying to get my meds filled. Eventually everything worked out. You'll notice I didn't get in to the details because I want to keep my blood pressure down! I began to feel fairly normal until I began playing my drums. It's been a passion of mine for most of my life. I love playing to songs and enjoy the low impact for my sore back. I quickly realized that I barely made it through one song before my body shut down - physically and metally. I couldn't believe this was happening to me. Between the meds, fatigue and having to inject myself twice a day I began feeling depressed. Everytime I looked at the Lovenox box my heart sunk. I started thinking about all the things that could have attributed to my condition. Was God punishing me? Am I being tested? Did I do something stupid? I began looking to the internet for answers as well as opening up to family and friends. I knew, inside, something was very wrong but felt like it was perceived as a bad cold. There was so much information missing on the subject matter.

Act Four: Hope - Today I found this site and read everyone's story. I suddenly felt more peaceful. I actually played my drums for two hours today. Again, a tempo and number was the focus and goal. Of course, I would pay for it later being extremely fatigued. My chest still feels heavy and the sore back and abdomen is slighty present. My heart rate is a little higher than it should be but my blood pressure is really good. I know there will be ups and downs with little warning. That's ok. I will beat this. I am in control of my body, for the most part, and will do everything I need to put this condition to rest. Thanks for reading. Ronald

Jennifer 17 months ago

It has been 1 year since my pulmonary embolism. I went to the emergency room after 5 days of shortness of breath and the worst pain in my rib. I thought I had broken a rib somehow! Little did I know one of my lungs was almost completely full of blood clots and my other lung was partially filled. I am convinced if I hadn't gone to the ER that night I would have not lasted much longer. I remember sitting there crying, thinking of my teenage daughter and everything I would miss. The ER doctor said to me "We know what it is, you are going to be okay now." I found out 3 months later from my hematologist that a clot had also been very close to my heart, I'm glad I didn't know that earlier. A CT scan in February showed no damage to my lungs or my heart. I have tested negative for clotting disorders, my pe was not a result of surgery or travel, it just seems to have happened. I have now been off the Coumadin for 6 months. After all this time I still have days that I feel tired and weak and every twinge of discomfort scares me. But I know being alive is a gift, and I am thankful everyday. I just saw my only child off to college last week, I cried just being thankful that I saw the day. Everyone keep your head up, it does get better, we are all survivors. Thank you, Lena, for the information you are providing, what a wonderful thing you are doing!

dave, scotland 17 months ago

as others have said, many thanks for sharing experiences. like some i have been an active and healthy guy, 57 yrs old. difficulties getting diagnosis, but eventually multiple blood clots in left leg found by doppler scan, 30.4.10. Clexane and warfarin together for 14 days, and since then warfarin alone (11.5 mg per day) to maintain INR between 2.6 and 3.2. Recovered well in May, what I now call the acute phase, but since June as I became more active, have repeated problems with breathlessness and fatigue - I now call this the chronic phase. For the last 3 months I thought these were a side-effect of the warfarin, although it is not mentioned as such in patient literature, and 2 doctors have not taken my comments seriously. ONLY in the last couple of days have I now realised I probably have PE as well: next GP visit on Wednesday, so I will push for CT scan minimum. My job involves a fair bit of driving and physical activity which I can only manage for 2-3 hours per day. I'm not much into computers so finding this is a real godsend to me: I had been talking to my wife about setting up the "6 o'clock club" (in the UK we all take our warfarin at 6 pm!), but there's no point, since you have already done it! Once again, many thanks and just do your best!

david, texas 17 months ago

thank you so much for all the information. i was sick for 3 months and in july they finally found over a dozen clots in my lungs. said it was caused from my knee replacement. it is now sept and i am sick again - scared about going back to the hospital for another long stay. i appreciate knowing i am not the only person in the world with this and understnading why i am so tired all the time. thank you

Marita, Vic, Australia 16 months ago

Thankyou so much. Finally, some information that makes sense. I'm 46, mum of 5, about to marry my partner of 27 years. Had to postpone the wedding. 2 weeks ago went to ED on my local GP's orders. Thank God he is such an astute doctor. I thought it was asthma - I had a similar experience exactly a year ago (well, I thought it was similar), but the asthma meds this time weren't working. He ran a di-dimer test, well, the rest speaks for itself. I have 'numerous' clots in my lower right lung and 'some' in my lower left lung. I really thought I was going to be ok for the 10th of the 10th - our wedding day. Luckily for us, my other half realised before I did that it just wasn't going to happen, and we've now made alternate arrangements for next month. I'm so tired of being tired....and not being able to get a straight answer about 'what's normal and what's not' has added to the anxiety. I constantly feel a pain like a stitch in my right side under my ribs, and all I can think about is - is that a clot moving, am I going to drop dead? I'm scared all the time, and have aches and pains all over the place. Thankyou for telling your story, and to everyone for writing in, it really helps & I don't feel like it's the never-ending story of me being paranoid quite so much tonight. Please send a little prayer up for us to finally tie the knot on the 20th November 2010.

Eric 16 months ago

I thank you sincerely for taking the time to write this. Hardly any of this info was provided by the hospital, so I found myself surprised when I was short of breath and dizzy after even slight physical activity. Though hard to read, your info will allow me to be more patient with the recovery process.

Just returned from a 4 day stay at hospital for a PE thought to be caused by my body's reaction to a PICC line. Rushed to hospital by ambulance with dizziness, nausea, sweating, and shortness of breath. Treatment was basically as you described and am waiting for my INR to reach between 2-3. Thanks again!

heidi gibson 15 months ago

Glad (but not glad) to hear so many people with the same problems and pains as me.

I think the fact that I don't know what caused my PE is what bothers me most :(

MIchael 15 months ago

Lwelch- Thanks for your post. I am a 26 year old male who was diagnosed with pluerisy six months ago. The pain from the pluerisy went away after about two weeks. At the end of september I started having pain in my right lower back and in my chest on the right side. Thinking it was just pluerisy acting up again, I did nothing about it. I took a leave of absense from work and just rested. After 30 days of constant pain I went to the ER. They took a chest X ray and said my lungs were healthy. They gave me pain meds(which I refused) and sent me home. I continue having the chest pain, eating helps a little. I don't know what the cause of this is. It feels like there is something moving around in my chest. The mental toll this takes is just as bad as the physical. If I complain, the people around me make it seem like I'm complaining about nothing. The symptoms I have match a lot of the symptoms I've read here today. Somehow reading your story and your responses to other peoples stories has made me feel better, even if just for the time being. Thanks again for the post. - Michael

Susan 15 months ago

I am so glad I found this website. The doctors who treated me have told me nothing about what to expect after I left the hospital. I had a PE 2 Mondays ago and spent 5 days in the hospital.

I have had difficulty breathing, like something is sitting on my chest, rapid heartbeat, and dizziness, the same symptoms that I felt right before my PE.

This week I had those symptoms and they didn't go away so I called 911 and was back in the emergency room. They did tests and said that my lungs looked better but said I had an anxiety attack and gave me a prescription for a sedative.

I am easily winded and I feel like someone is sticking a finger in my larynx all the time, so I'm starting to think I have that VCD.

I go to the doctor today and I'm going to ask for a different anti anxiety medication and something for asthma because I can't seem to draw a breath sometimes.

I actually thought that I would snap back quickly from this but now I see that the road to recovery will be long and anxious one. Thanks so much for posting this. It's made me feel much better.

Tonia 15 months ago

So many of you will be surprised to know that I am 18 years old and was diagnosed with PE.

When I first had trouble breathing and chest pains I went to the ER where they did XRays of my chest and I was diagnosed with Pneumonia. A few days later I went to a 2nd doctor, who also did chest Xrays and once again I was diagnosed with Pneumonia. I was told to go for a check up visit in a week.

Well the day after my2nd diagnosis my mom came and picked me up from college and brought me home, where I just laid around propped up on the couch for a week until my follow up appointment at my primary physician.

They also took xRays and said that it did indeed look like Pneumonia, but I was showing no other symptoms of that illness. I was sent to another ER where they looked at my xrays and said it was possible that it was Pneumonia, but that they would do a CatScan to be sure.

And sure enough, I had a massive Pulmonary Embolism in my right lung and a much smaller one in my left. I was admitted in the hospital for 5 days. Every morning at 4am I had my blood drawn, my vitals checked every 2 or 3 hours, I was hooked up to a heart monitor, I had ultra sound on my legs, another cat scan, and they attempted a MRI (but lying down flat was too painful for me so they had to stop). I also received blood thinning shots twice a day in my stomach. I have been placed on the coumadin for 6 months and am allowed to do no physical activity more than a walk for that time period. I was just released from the hospital yesterday and am back at school, trying to talk to the Administration and Financial Aid to see if it is in my best interest as a student and victim of PE to continue for this semester.

My PE was caused by the oral contraceptive Apri.

Donnie Ricks, Midlothian Texas 15 months ago

I experience my PE about five weeks ago, which resulted from a DVT caused by a fall at my church about eight weeks prior. Like most men, I "pushed through" the pain from the fall and felt that everything would be okay.

But, I suffered the crushing chest pains, the shortness of breath and nausea, which caused me to go to the local E.R. The PE was diagnosed, and immediate treatment was administered. After almost five days in hospital, I was released with restrictions against riding my horses, my tractor, or the riding lawnmower. Other than that, I was free to do whatever I could "toleerate." Love that term; tolerate. The pain in my leg is a constant reminder that the clot is still there, and the coumadin is just a stop-gap measrue until that demonic thing is finally absorbed.

After release from hosptial, I experienced the euphoria of "I'm home,and I'm alive!" for about two weeks. But, going into the third week, depression set in, I suppose due in part to the limitations on things that I truly enjoyed doing. I've read about the depression, but I've not seen anything about the almost uncontrollabe rage that I find myself experiencing. Sometimes I wish the PE had done it's worst.

Neil  15 months ago

Hi,

Thanks for the very informative page. I seemed to develop DVT in my left calf in April - blame the ash cloud for a long train journey & meetings. 2 days after this trip my left calf swelled up and became sore. I put it down to being a "mystery" muscle strain.... In May I developed a cough and woke up the next day with a sore right lung. My GP initially diagnosed this as muscular. Over the next month I still had pain and repeatedly visited my GP who couldn't hear anything and still put it down a muscular problem. In mid June I developed severe pain in both lungs, coughed up small amounts of blood each morning and was eventually diagnosed with a chest infection. This responded to antibiotics, but over the next few months I still had pain. In mid August I had a chest x-ray that showed a small pleural effusion on my right lung - again this seemed to respond to antibiotics and I felt quite comfortable and started running/exercising again from late August to early October. A chest X-ray in early September showed little other than what looked like scar tissue at the bottom of both lungs. In early October it all flared up again - pain and coughing up blood. I now had a referral to a specialist. By the time I saw him most of the symptoms had again cleared up and I was left with a small amount of pain. He couldn't find much wrong with me but thought there was a small pleural effusion on both lungs.

A subsequent CT scan revealed that I have multiple pulmonary emboli on the lower lobes of both lungs. I was immediately told to go to hospital and start on Heparin and Warfarin. I went home after one night in hospital as they figured not much was likely to happen as I'd already had it for 5 or 6 months!

Nearly a week later I'm working again though feeling slighly weaker than I did last week (before the drugs). Hopefully it all clears up - but it shows that persistence is sometimes necessary to get to the bottom of things!

Jennifer 14 months ago

Just a quick note to thank you for this wonderful website -great information.

I am a 37 year old wife, mother of 2 small children and career woman -who was diagnosed one week ago with PE (2 in my right lung and 1 in my left) and a clot in my left leg.

I had all of the similar symptoms last Friday as described above and went to the ER at 2 AM. I thought maybe I pulled a muscle from an aggressive bootcamp class but was SHOCKED to hear the real diagnosis! I was also very disturbed to hear how "lucky" I was......

Recovery is scary; I have come to realize that I must stop working (as the stress of sitting in my bed answering calls and emails is causing tightening in my chest)and now just wait to feel better. I can hardly pick up my 19 month old son without needing to sit down.....I am nervous every time I feel a "twinge" or "pain" in my leg and chest for fear the clots are moving. I am at home now on Coumadin with INR levels at 2.8 and would like to know -what keeps the clots from moving to a fatal location at this point? Not much information on the subject and the doctors do not give clear answers......I consider myself very lucky and thank the Lord daily for the clots stopping at my lungs and not another location so my kids will grow up with a Mom but I do not feel like I am "out of the woods" yet.....it has only been a short time and I am tired of being "nervous" all of the time!

glchee 14 months ago

I, like everybody else was searching for recovery from pulmonary embolism. Not much from my doctor or the internet. I found this site thankfully. My story started with an ACL knee repair. Everything went fine. I had a double procedure with the second procedure being extraction of wisdom teeth. I was recovering fine but I came down with pneumonia. I remember when because China’s Tiananmen Square massacre was occurring and the Indy 500 race. Toward the end of the month I had my first Deep Vein Thrombosis (DVT). From 1989 to 2007, I had a total of 5 DVTs. I was always leery of my DVT turning into a pulmonary embolism and up to that point I did not have one. I turned 50 last year and thing happened. I had been removing stumps from the back yard a couple weeks before going into the hospital and it really winded me. I could not believe that what I was doing was tiring me out. A couple weeks later I was coughing up blood and I had my first pulmonary embolism May 28th. I was in ICU and the hospital for 7 days. I was admitted May 28th and didn’t wake up until May 31st. I said to myself, “what is going on with my blood clotting”. I didn’t some heavy internet searching and found this site and a condition called thrombophilia. Before I could schedule more testing with my doctors, I was in the ICU again Sept 16 thru 21. Same as before, coughing up blood. The first time in ER, they said I had pneumonia and send me home. The coughing up of blood stopped. The next night it started up again, coughing up blood. Like the last ER visit, ER thought pneumonia and tried different things and it stopped again. I was discharged. Before leaving the hospital I needed to use the bathroom. When I left the bathroom I starting coughing up blood again. The admitting nurse said this was normal and she didn’t see much blood. I told her that I was swallowing the blood, so I started to let some out of my mouth. Some got on the floor and they finally let me back into ER. After 3 hours of coughing up blood I was admitting into the hospital. I was in ICU again and this time I ruptured two arteries, the right upper intercostal artery and right bronchial artery. Pretty scary. I went back to work Oct 5th and on Oct 9th my neck began to hurt and swell. I saw my GP Oct 11th and he thought thyroid infection. To make sure nothing was going on he scheduled me for an ultra-sound on my thyroid gland. I got the results Oct 14th and it was a blood clot in the jugular vein. (I can’t believe this year). My INR is finally therapeutic. But I still have a cough. I requested a complete blood work test for the different factors of thrombophilia. The results came back and my cardiolipin antibody was out of whack. This had been identified before but did not cause any concern because I had only 3 DVT up until then. My pulmonologist wanted me to get an echo test (MRI) to test for Pulmonary Hypertension because of the episode of rupturing 2 arteries in September. I got that result back and it came back negative. Pulmonary Hypertension is a pretty nasty condition. It is almost Thanksgiving and I am very thankful to be alive. My hope is to be able to ride my road bicycle again.

gw 13 months ago

Donnie, if you still have depression and are on warfarin (coumadin). it may be the medication. There are other medications that may work for you. A new one is pradaxa. It is much more expensive than warfarin, but doesn't reqire the monthly blood testing for clotting time.

Rosa 13 months ago

I am 38-years old and this past March, I suffered a "Saddle Pulminary Embolism" which took up both lungs and brochial tube. (the left lunch was about a third full of blood and of course the damage is unrepairable). The clot began in my right leg, my deep vein from my ankle to my groin, I had no symtoms except for heaviness in my leg. I've had all of the blood panels done and it has been determined that the contraceptive I was on has caused the whole trauma.

I have had many ups and downs, but what is the most bothersome is the Chest Inflamation. It can only be treated with anti-inflamatory. The chest pain reminds me of the PE, stops me in my tracks, and takes my breath away. I moved to a lower elevation in hopes to control the swelling in my leg and the oxygen saturation in my blood, that has remained low since the PE and makes me have to sleep with oxygen.

I hope that the year mark brings more relief but it is fast approaching.

Jean 13 months ago

My 30 year old daughter was diagnosed with 2 PE's in each lung on December 9. She had crushing chest pain and could only take shallow, fast breaths. The ER doctors immediately ordered a CT scan to confirm PE, gave her morphine, her first blood thinner injection, and transferred her by ambulance to a larger hospital in our city. They assured her she was going to be ok; that she had made it to the hospital. If she had not gone to the ER when she did she probably would have died. After 5 days in the hospital (ICU) she was released and is following the standard treatment of coumadin. She was advised by physicians in the hospital to have genetic testing done, as her father had a blood clotting disorder and had blood clots in his legs. Her clots came from her legs and the doctors feel that smoking and taking estrogen played a role in developing the PE's. I was glad to find this site as no one has told her what to expect next. They sent her home with no restrictions. She saw her PC doctor two days after release from the hospital and he knew nothing about the hospitalization. He cancelled his appointments this past Thursday afternoon (I guess to get an early start on Christmas) so her blood was not tested this week. She still has some mild chest pain and shortness of breath. She is also very emotional--she wonders why she didn't die and what the purpose of her life is. Almost like PTSD. Reading posts here help confirm that what she is feeling physically and emotionally is normal. I just feel like her current doctor is treating this casually and she needs to find a doctor that will answer our questions and give some guidance on where to go from here.

Rob 13 months ago

I'm ever more grateful for other's who share the same issues that I face I was told that I have bilateral pulmonary in 2009 Asthma obstructive sleep apnea dyspnea

on exertion cough chronic fatigue and malaise and idiopathis hypercoagulopathy hyperreactive airway disease GERD deconditioning. I stayed off work for six months thinking all was okay rushed back to work of course to pay the bills not thinking about the pain hasn't went away. I have a bout with reactive airway disease Asthma and you name it headaches chest pain SOB after 10 years at my job I was not really aware that the visible Black mold under my desk and in the carpet and throughout the building would have a major impact on my life and respiratory system I have no HX of Asthma or Pulmonary in my family I don't smoke drink or do drugs and have'nt. My office was in the basement that flooded every rainy day and backup sewage. It was business as usual And this is a Health clinic you think . They began to do repairs after several years of musty odor and wet moldy floors walls and No effort was made to relocate or to shield us or divert ventilation not knowing that all this time this was making us sick. I returned to work Sept 2009 to soon discover nothing had change in my work enviroment and that i began to have some of the same symptoms which appear to be related to the work environment. I worked three Jobs and couldn't return to but only one because I was so tired after leaving this place and experiencing Shortness of breath wheezing coughing achiness headaches a moldy taste nausea Vomiting. I felt sick and my bleeding started internal I had been posioned by the mold and didn't realize this in 2009 but other co- worker were always getting sick to with respirtory sinitius flu like Pheumonia and severe asthma issues. The walls started coming down floor ripped up and we were there the entire time they had hazmat suits and mass and we were recontainanated I couldn't breath and began to bleed through my clothes my co-worker said you need to go to the hospital I called my spouse and my doctor sent me to the hospital and soon to discover Recurrent Pulmonary emboli six days stay in the hospital. This PE took alot out of me deconditioning to the point that they told me the life of my lungs was that of a 84 year old im only 46 . Never had asthma obrustructive sleep Apnea GERD Chronic Fatigue constant chest pain ,SOB What is going on I thought until August this year 2010 I began to experience worsen symptoms all over again my Spouse is a nurse and spoke to my doctor's and here we go with the CT scan more as they call reccurrent Pulmonary emboli APS they me rushed to the hospital the pulmonary doctor had me admitted and 6 days later i fill like a old woman visiting nurse physical theraphy home health aid . Im a person who works three job now walking with a cane and badly deconditioned I had a conversation with my doctor at my appointment he is clueless and nobody knows the severity of your pain but you and God. don't let anyone rush you through your life i have learned to take my time and live and take care of my health. I will not be returning to work indefinite and yes thats depressing but i can't do my job any more Who can i give cpr and cpi to ? Who is going to give it to me afterwards. Know doctor's are anyone will ever rush me back to work again Now at the same job my supervisor was diagnois with blood clots on the lung and lung cancer. What can we do for other when can't do for ourselves the list of disabilites keep adding up and I want to live my INR all of the place still not therpuatic shortness of breath headaches CPAP daily dizzy you name it. But thats not the end for me I start pulmonary rehab next month Feb. I don't want strike three this ride is not fun but very painful and yes i have PTSD and depression from this whole ordeal and I don't take it lightly Sleeping is hard and trying to regain. I don't know if my job would pay me to lay down when my head start hurting or the severe chest pains and go to all the doctors appointment if anyone know of this please let me know. I've worked in the field of addiction and mental health for 20 plus years and Lisenced and certified and college educated but what does all that mean when im moving like a turtle with bad knees. I will work on getting my life back one day at a time this is my healing process . Not my doctors or insurance company will be making decision about my life no one will put me out to the pastor with the cattle again. Stay strong stay Blessed and most of all due you. Be healed in your time. Cause tough times don't last always but tough people do.

Rob  13 months ago

Oh i forgot to say they found out through all the test chemistry, Genetic testing that my blood clots weren't in my legs never had surgery no family history or prior hospitalization our injury or birth control my PE came from toxic enviroment sick building syndrome. Bad Air in building cause respirtory , bleeding lungs PE, Hives, the list goes on.

bhamoggy 13 months ago

Firstly, what a great site with an abundance of useful info from lots of people so many thanks for all who have posted:

I've been out of hospital for a week now after 8 days as in-patient.

Diagnosed with an EXTENSIVE BILATERAL PULMONARY EMBOLISM with R VENTRICULAR STRAIN.

I was given tinzaparin injected into my stomach first 4 days then warfarin after that.

Having had ECG, X-RAY,BLOOD TESTS AND CT-SCAN on arrival, i was quickly diagnosed with P/E.

After 4 days in hospital, they sent me for ultrasound on my other organs, liver,pancreas,bladder,kidneys etc all appeared ok with no problems.

No ultrasound was done on my legs though.

Having been out a week now, I'm still struggling and getting out if breath quick but have be warned it could take up to 3 months or so for full recovery.

I had a P/E around 6 years ago although not as bad as this time and I'm told now I'll be on warfarin for rest of my days.

I am worried about the R VENTICULAR STRAIN, that was diagnosed with the P/E

Will that repair itself in time or will i always have a weak heart now?

any input would be very welcome

Sean 13 months ago

Like most before me have indicated, I am thankful for this experience-based resource of information and support.

I am a 35 years old male who was diagnosed with my PE about 11 days after having emergency surgery for a broken collar bone at the beginning of December. I take some comfort in being able to associate a direct cause of the PE. Nonetheless, it has been quite painful recovery, compounded by the fact that I can't lift my 6 month old son due to my broken collar bone. I experience excruciating pain in my lungs when I attempt to lay or sleep horizontally which means that I've been trying to sleep in a more vertical position (in a chair or recliner) for the past several weeks which is less than desirable, but I guess it could be worse. I long for the sleepless nights that were strictly because of our newborn son! Now, with the sleeplessness because of my injury combined with the fact that my son still isn’t reliably sleeping through the night, I’m realizing the true meaning of tired. On the other hand, to those who (used to) say, “I’ll sleep when I’m dead,” be careful what you ask for!

Anyway, I thank God for my situation. I've experienced some serious head games ever since it happened but after reading all of the comments, I feel more confident that I’m one of the lucky ones and that I just have to give it time. I've been reluctant to rely too heavily on the oxycodone pain meds but I don't see any other alternatives to getting some form of rest at night. If anyone has addition insight, I’d appreciate it. Otherwise, I wish you all continued healing, both mentally and physically.

Guin 13 months ago

Hi, thank you so much for the article and in depth analysis you provided regarding different phases of PE and the experience of being diagnosed with it. Now I truly understand the symptoms that I still feel. I had 2 major surgeries - a total hysterectomy and nephrectomy in Sept. 2010. After a day of discharge I went back to the ER because I nearly collapsed several times at home. I was dagnosed with PE and stayed in the ICU for 2 days so spent a total of 11 days. I went through all the battery of diagnostic tests described in this article and we never really got to find out what caused the embolism. I did smoke for about 14 years with a 6 year interval in between. I also took oral contraceptives for close to 4 years, but that was about 20 years ago. I am getting ready to go back to work after almost 4 months. I am still on Coumadin as getting to the Therapeutic range is quite a challenge for me and my Cardio thoracic surgeon who monitors my condition. I have my PT-INR test done every 2 weeks since I was discharged last October 2010. Your article is truly a blessing because it gave me a very deep insight on what to expect during recovery. I now realize that I will really have to wait for my body to heal completely before I can expect significant improvement. Hopefully I would be able to arrange for a reduced working hour scheme with my employer to get me on the road to recovery sooner. BTW, I forgot to mention I am asthmatic so I have regular check ups with my pulmunologist to ensure the asthma doesn't exacerbate the PE. I now fully understand why they call us patients, it's because we need to be truly patient as we travel the road to recovery and well being. Again thank you, you helped us all. May you continue to be blessed.

Rebecca 13 months ago

Another thanks for a great article...just returned from a Christmas vacation overseas a week ago, feeling very short of breath after an episode of pretty severe food/water poisoning near the end of our vacation. Figured it was just residual weakness from being sick, since I'm relatively young (mid-thirties) and a gym freak. But the shortness of breath got worse over the next couple of days, so I went to the ER on the advice of a telehealth nurse, and lo and behold, my lungs were FULL of PEs, both sides & everywhere. So, 2 days later, I'm trying to figure this whole thing out. Luckily (?) my only symptoms are severe shortness of breath (can't even make it around the block, when I used to do 10K runs with no problem) and dizziness/lightheadedness. Am on rivaroxaban twice per day now - has anyone had any experience with it? Also I haven't had a leg ultrasound yet to determine whether I have DVT - should I be moving around at all? I have been going to work...can't handle sitting at home and worrying!

Ron 13 months ago

Great Article .. fits my profile closely.

I recently had a massive saddle PE ( Jan 3rd ) traced to a trip to India in August ( 5 months prior ). I nearly died . I was in ICU for 6 days.

My theory is DVT, however, even 5 months later I still am generating clots from my calf and currently have a clot behind my knee.

Rebecca , Listen, don't mess around with this stuff. If you suspect DVT is the root cause then the clots most likely started in you legs. Get an ultrasound. It only takes one emboli to detach from the clot to kill. Not worth it.

I owe my life to an emergency room physician who was experienced in the symptoms.

Appreciate this site and the details for dealing with PE.

I will be out of work for 2-3months but alive.

lasuvidaboy 12 months ago

Thank you for this site! I had my PE one year ago in January of 2010 and am still re-covering 1-year later. I am a 47-year-old male who has been very active my entire life. My clot was the result of a severely torn calf muscle while doing calf raises at my gym. I have been training at the gym since I was 20 and this was my first serious injury. The PE developed approx. 2-months after the initial injury and it came on all of a sudden. I was hospitolized for 6-days and finally released. Recovery has been frustrating (not to mention those occational anxiety attacks!) as the breathing problems still appear. A therapist helped me deal w/the anxiety and breathing exercises are very important. The problem of course was in the beginning I could not get enough air in my lungs to treat the anxiety attacks! I was back at the gym after 6-months but on 'light duty' and stairs of more than 1-level are still a challenge. After many doctor visits, it looks like the PE is still with me and may be with me for several more months. I deal with it (what is the other option:)) and thankfully my family and friends have been very supportive of my condition-never pushing me. Again, thanks for this site and all the informative letters from other PE sufferers.

suzie  12 months ago

my husband and I just finished having lober and steak dinner . I told him that my rightside was hurting ,we thought just gas . By the next morning I could not breath very well and was having troubles lying down hurt tons . I was just going to stay home from work but my husband made me go to the hospital ,good thing he did cause i had blood clots in both lungs my left lung was small but right was very big ,half my right lung was full of blood .I was in hospital for 12days and now home and sit sleeping in sitting up in chair cause lying down still make very short of breath like someone is sittingon my chest . I m very tried still and have friends staying with me nite and day , doc does not want me to stay by myself for awhile .I feeling vvery angry and frustrated that i can not go back to normal, Im crying all the time . Im very glad to find this site and to know that I m not the only feeling like this !!!!!

kelli 12 months ago

I agree with others so glad to run in to this site. I had the lap band surgery dec 3rd on dec 8th started not to feel to well short of breath and tired. Dec 9th i went to my local er were there they found i had a pe they shipped me to a bigger hospital because the clot was so big. when i got to the other hospital i was in very bad condition because of my bad condition and the size of the clot which was the biggest taken out of a living person it was a straddle clot went in both lungs completely they have pics and it is the entire pulmanary system it stayed together so yes i had to have open heart surgery to remove it. Im lil over 6wks out of surgery and the pain is still there sometimes i think iam paranoid because im afraid of it happening again they called me a miracle sometimes dont feel like it with my chest still hurting from being cracked open. they put a filter in because i still had clots in my leg so i get scared its not going to stop them.

almasi 12 months ago

Thanks for a very useful hub.

dee 12 months ago

I am very grateful to have come across this site. In October 2010, at the age of 32 I was rushed to the hospital by ambulance after collapsing at work and having a seizure. After coming around from the seizure, I was experiencing crushing pain in my chest and had great difficulty breathing.

One colleague phoned my cardiologist to meet me at the emergency room while a second colleague called for the ambulance.I don't remember much of the ambulance ride, however, I later learned that EMS gave me CPR on the way to the hospital.

Upon arrival at the hospital, my heart and lungs continued to struggle and fail. The physicians suspected that a PE was the cause. After several hours of CPR and thrombolytic drugs, they managed to stabilize me for a few minutes to get a scan of my heart and lungs. As was suspected, PEs were the cause of my heart and lungs failing. I had two massive saddle PEs blocking my pulmonary arteries, many more small PEs in both lungs and a DVT in my left leg. Two cardiologists called my family to let them know manual thrombectomy was my only hope for survival as they had been unable to stablize my breathing and heart rate for more than a few minutes at a time during the previous hours.

Within 48hrs of my arrival to the hospital, I underwent two separate surgeries to remove the largest emboli. A temporary filter was inserted after completion of the second thrombectomy.I spent 5 days in the ICU/CCU followed by another 4 days in a medical room before my discharge.

Prior to my discharge it was determined that I have Factor 5 Leiden Deficiency. I have been stabilized on Coumadin since my discharge.

The first time I recall a physician telling me that 5 days had passed since my hospital admission, of which I have no recall at all, I had coded more times than they even could count, I had undergone 2 surgeries, had future surgeries already scheduled, had massive PEs and a DVT, over 5 broken ribs, had a clotting disorder, and would be anticoagulated for life...I was completely overwhelmed. During the next several days in the hospital I felt like I was conquerring the world as I started to grasp some of the information coming towards me...only then to face discharge. I was beyond scared to leave the safety and security of the hospital. Getting back home led to so many more challenges than I thought I would be facing...pain control, shortness of breathe, coughing up blood, the emotional roller coaster of recovery and learning to eat low salt, low fat food with stable amounts of vitamin K, just to name a few.

I have been fortunate to have made incredible progress both physically and mentally over the past two months of my recovery. I'm very appreciative that it appears I will have minimal long term damage to my heart and lungs with no other deficits noted. However, I am still facing challenges working thru the emotional aspects of recovery. I have experienced fears and anxiety related to healthcare decisions, work and my own financial stability that at times have been more than overwhelming. I'm hoping that as the months pass, this too will become easier with time.

Marita 12 months ago

Hi all, I have a question. I had multiple pulmonary emboli 24Sep10 (lots in my right lung, some in my left). I thought I was getting back to 'normal', other than a few twinges and generally being tired, so returned to work on short hours. After 3 days at work I started to feel unwell, just a cold I thought. I still felt quite nervous about being back there, so tried to ignore it at first. Started coughing more, temp went up & I realised it wasn't just going away, so trotted off back to the doctor. Had a chest infection, so onto antibiotics & ventolin to help the breathing. I just got worse & worse, ending up with a violently high temp, pretty much delirious, eventually it came down but I still felt really bad. I had to wait for an appointment with 'my' doctor (who originally diagnosed my PE), and he listened carefully to my chest & sent me for an x-ray. Turns out I have 'community acquired pneumonia'. Not really bad, but taking more oral anti-biotics & have to have a total of 5 intra-muscular penicillin shots over 5 days. And taking flixotide, which helps sometimes. Still feel like I'm choking most nights, and can't walk for more than a few minutes without starting to cough. Has anyone found you are really prone to this type of issue, and for how long? Will it take me a lot longer to get over the pneumonia than if I didn't have the PE? The doctors usually answer my question of returning to work with - "If you feel up to it". Well, I DON'T KNOW! I might feel up to it for half an hour then want to run home to bed. No use to anybody. I'm sure it's sort of in my head, but the breathing problems are real, and scary. I'm trying to talk myself into returning to work, but I can't cope with getting so sick - I'd rather be broke.

Dee 12 months ago

Marita, take time and let your body heal from the pneumonia. I'm 3 months out from my PEs and last week received a lecture fron my pulmonologist that I wasn't taking it easy enough on my body and to remember that my heart and lungs,in great shape for a PE within 3months, are still healing. I was confused as my docs all told me to do as much as i could. So i was pushing myself to return to normal life and beyond. When i reported back the symptoms i was having during exertion-the docs all said i needed to slow down. It's difficult for the docs to tell how much and how quick your body will recover so they give us 'do ad much as you can' directions and then give more advice once we can give them some feedback.During the healing process it will take longer to heal a secondary issue such as pneumonia. Rest up and best wishes for getting past the pneumonia and for continued recovery from the PE.

TJ 12 months ago

Thanks for the article. I was in the hospital from Jan 10th through the 14th with an acute saddle pulminary emboli. Returned to work almost immediately. Thought I was recovering fast but I now have those symptoms of back and chest pain(fairly mild) along with axiety. I don't want to keep running to an emergecy room

TJ 12 months ago

Since my post worked I will be more specific. I am in my 50s but thin active and have no clotting factors or family history. Monday evening the 10th I came home from work was laying on the couch and suddenly had that odd back pain that went in deep. something told me to go to urgent care. I had no breathing issues. From there I was rushed to a hospital ER. About 2 hours from the first pain a CT scan showed my clots. I was admitted and was pretty much oblivious to the danger I was in. Once out and put on thinners I really didn't get it even though I asked a million questions. This article was the best and i have referred back to it often. Every time I get a recurring symptom. I have them now wich brings anxiety. The doctors just say, if you think something is wrong go to the ER. Well how am I supposed to know. You had mentioned that it is common to feel sensations where you had symptoms. Some days have been great and some have been bad. My nra is checked often but it will be at least a month or so before they recheck the clot. any advice. How safe are we?

stephanie 12 months ago

I have to bouts of PE's one 2007 and again in 2009, I am on coumadin for the rest of my life. The second time in 2009 was about 6 months after gettng off coumadin, I had breathing problems the symptoms were dif. from the first time, had the chest pain and the shortness of breath, being overweight everyone thinks thats your problem or you are over reacting. Do the clots ever dissappear? Will being of coumadn stop new clots from forming? I am so nervous I am on advair 2x's aday and xopen up to 3 times, I sometimes feel a little better but I still have a hard time walking and breathing, I just got a scooter, will I ever get better or should I expect to feel this way forever? Thank you

Dawn 12 months ago

Hi all, Bilateral PE July 2009. I was 45 then, am female. A year out, lungs finally felt normal again. Even kayaked a lot (including a ten mile paddle) and got up the nerve to ride my bike. Anyway, with all the snow and ice shoveling up here in the Northeast I am "feeling" my lungs again. You all know that feeling, I'm sure. The pressure, heaviness...hard to put into words. Can that happen? Be fine for 8 months and then overdo it and go backwards?

Dawn  12 months ago

I hadn't thought of the cold air. I was out shoveling for a couple of hours every time I went out. Other than that I spend as little time as possible out in the cold. Maybe it was a jolt to my system. Hope it doesn't take too much longer to get back to normal again. I did check in at the hematologist today to rule out clots and low iron. Thanks for that food (cold air) for thought and this informative site.

TJ 11 months ago

Just checking in. It has been 6 weeks since discovering my acute "pulmonary saddle emboli". Since(last week)I was told by my docs that the clots are disolved(they are assuming)I feel much better. Stronger and much less anxiety. however I am coughing and also stil get some pain in the lung area especially while lying down and it freaks me out. I was told I could begin my outdoor activities again(causiously) I'll wait for some of the ice to melt. I am hoping to get back into kayaking and hiking again this Spring. No reasons for this yet but they are recommending coumadon for life. This concerns me due to life style and since I have other medical issues and the supplements and pain killers that worked are now off limits. It will be my decision. It may be quality of life vs Life. Waiting for results of a couple more blood tests

starinyoureyes 11 months ago

I have red this and must say it has been a big help I found out on 19th nov I had a clot in each lung .After being in a lot of pain and I could not breath I went to hospital in the car walked in but almost dropped .I was not sure what it was .I was kept in for a week and put on oxegen and blood thiners I have had a few scans .Six years before this my daughter of 27 years had died in my arms suddenly.It was PE .I didnt know that it was happening to me to.But I was lucky I am alive to tell the tale.It is a very frighting thing to have as you feel like a time bomb waiting to go off.No one tells you much about it over here in Belfast.I have been feeling depressed and still have a lot of pain in my lungs were it all happened.As a mother and a grandmother I feel quilty that I am still here and my beautiful daughter is dead.I think this is part of the shock of it all I am on warfarin now for 8 months but a check after 6 months.I would just like to say thank you as I have found out more about this illness here. And the after effects and dont feel so alone And am greatful for your help and advice.

Kollege  11 months ago

I am 23 years old recovering from PE. The original location was unknown, but birth control was suspected. I'm just about a two months into recovery. I go to college and it happened after my first week of school. It wasn't sudden, but a continuous buildup of pain until it was unbearable and I went to the ER. It hurt to walk/breath/stand; everything I did hurt. I had a CT scan and the pain was immense (I cried the whole time). I had a similar experience as you in the hospital; where I had to reteach myself to use the bathroom and walk. Luckily I was stable in a weeks time to go home. I didn't go back to school for another couple of weeks. I only found this forum because at this moment the left side of my back hurts so bad (it was my left side that hurt to begin with). With hospital bills being so expensive I don't want to go unless I absolutely need to. Its nice to know of others that have or are going through the same thing.

ANNE ARMSTRONG 11 months ago

Hi. So pleased I found this site. I am recovering from my send bout of submassive bilateral emboli in three years. My first time was following a flight from England into Las Vegas. I was short of breath and couldn't walk without feeling dizzy. I was admitted to hospital and diagnosed with bilateral emboli - spent two weeks in hospital and then accompanied home with a medical team on oxygen. After three years I was still using oxygen at home on a regular basis and suffering from fatigue and shortness of breath. Then without warning I collapsed at home and was taken to hospital as an emergency. Admitted with submassive biateral pulmonary embolisms and now I am on warfarin for life and at present 24/7 oxygen. I know it is a long road to recovery so will just take each day as it comes. I am 65 years old, asthmatic, have high blood pressure, menieres, tinnitus, dysphagia, hiatus hernia, arrythmia. Withthe help of my husband, a wheelchair and portable oxygen I have got back into my busy social life. We go out about three evenings a week, have meals out at least twice a week and visit friends and relatives regularly. We have regular visits from family; three sons and their partners and our three grandchildren. We go shopping most days for food or just to browse. The doctors told me I was extremely lucky to survive this second bout of pulmonary embolisms and the damage caused to both heart and lungs is serious. But the important thing is that I am still here and planning for the future.

Rosanne 11 months ago

I had a pulmonary emb. last April. I have had many complications after including a vena cava filter placement that became gangrenous. I will be on cumadin for the rest of my life and the filter will also stay in for life. After a few months of less palpitations they have come back. I had blood work done last week and it came back with overactive thyroid diagnosis. Has anyone else had thyroid issues caused by the embolism or the cumadin? I never had any thyroid problems before.

Scott 11 months ago

Nothing personal everyone, but I'm glad to see there are plenty of other folks I share this "problem" with. I just spent 16 days in the hospital in Moscow, Russia following a bout w/ multiple lung and abdomen clots, as well as pneumonia. I've been diagnosed w/ Factor V Leiden and I'm currently taking Warafin on a daily basis. Btw, I'm a 42yr old male.

My symptoms came out of nowhere and damn near made me immobile within a few hours. Multiple tests, needle pricks, and servings of bad food later I walked out of the hospital and took the Metro home.

I still get some discomfort when I take a deep breath, especially outside in the cold. One of my biggest problems is having to eliminate or greatly reduce my alcohol intake...not because I'm a drunk sipping on a bottle all day, but because I genuinely like beer. I'm told you can have 1-2 beers or a glass of wine a day as long as your INR remains within range. For most people a glass of wine doesn't last through dinner! Well, I'm less than a week out of the hospital and I've decided to wait on any alcohol until I make an early return to the States next week and speak w/ an American physician.

Like a lot of you, I don't understand why this is happening to me now. Moscow winters can only help but make you a bit more sedentary, but if I've had Factor V all my life why didn't it manifest itself on a 12 hour plane ride or 14 hr drive across the country? Questions that will never be answered I suppose.

Gabriella 11 months ago

Thanks for writing this. I am currently in the hospital with a PE in my right lung. I had no idea what was going on and still am pretty freaked out. I have been here for 4 days so far (on my 4th day) and still they are trying to adjust the meds. I don't feel well, am anxious and scared. This article has helped me understand so much more. Thank you so much for writing it. It is a tremendous help and calming to me. I am really freaked out and have a lot going on besides the PE. I have two young girls and just want to live to be their mom forever. :*(

LouiseNewZealand 11 months ago

This website is an absolute blessing to me! Thank you to the maker of the site and also to all of you who have shared your own situations.

I was taken to the Emergency Department on the 17th February, 2011, with terrible pain in my back. A blood test showed the presence of clots and a CT Scan confirmed Multiple Bilateral Pulmonary Embolism. My ECHO was excellent as was the scan of my legs (no DVTs). I am yet to find out why I have this. I was in hospital for 1 week and am home and doing well I think. I don't know if I am really doing well because I honestly have no idea what I should be expecting to feel like? Like many others I get so fatigued so quickly, and the heart races and I need many rests from just pottering around. I'm off work and have no idea when should go back, but just know that there is no way I could go back yet. This PE is scary because I don't really understand the risks for the future. I was on Clexane (heparin) for a week, as well as taking WARFARIN which I am still taking. My levels were between 2.4 - 2.7 but the latest one was 2.0. I don't want it going lower but my Doctors nurse said that my doc may even let it be down to 1.8 which worries the heck outta me. I don't want it that low..I'm anxious enough as it is.

I've been online today looking for relaxation music/techniques, because when my mind isn't occupied I'm feeling very anxious.

My two sons are 18 and 14 years, and their Dad committed suicide in 2005. My boys need me and I can't stand the crazy fears that are entering my mind from time to time. I just want to feel peaceful through this.

Thank you for the opportunity to share this load that is on my shoulders.

Kindest Regards, Louise.

LouiseNewZealand 11 months ago

Hi again. I've got a question please. I left hospital with my INR level at 2.7. I was taking 4mg. Since I've been home from hospital (about 12 days now), my INR level has been dropping. I'm being blood tested every second day. My level 3 days ago was 2.0, and now it is 1.8. My doctor said he is very happy with 1.8 but I am not and he knows I'm not. My General Practitioner has had me taking 3mg daily no matter what my level is, and continues to do so. I rang my doctor from the hospital who said if it was him he would have increased my dose. But still, my doctor doesn't seem to mind 1.8. It's really annoying me and concerning me that my General Practitioner see things so differently to the hospital and myself. How do I get peace of mind about this?

Logan 11 months ago

Thank you so much for this article!! This site has answered almost all of my questions! I just suffered a PE on the 4th of March and was released from the hospital the next morning. I've had soooo many questions since and not enough face time with doctors to answer them.

I'm an 18 year old female in my first year of university. When I first experienced shortness of breath while walking to class I thought nothing of it. I blamed it on being out of shape, having a cold, and the possibility of asthma which runs in my family. I had plans to go to the clinic for a check up last Friday but ended up waking up in the night with crippling shoulder and back pain. I couldn't lay down or sit because of the pain. I could only stand, which much difficulty due to dizziness. By the time I was in the hospital and on pain killers I felt almost fine again. I am sooo thankful that my experience wasn't as painful as others have been. After the X-ray came back clear a CT was ordered and a bunch of small blood clots were found in the bottom of my right lung. Since then its been daily Tinzaparin shots in the stomach and early morning blood tests. I am tired all the time. The pain in my back and shoulders comes and goes and sometimes is very sharp. I am very thankful that these are the only things I've had to endure post-PE.

The clots were most likely caused by my birth control 'Yasmin' but I may also have a genetic disorder, most likely factor V leiden. My uncle has this disorder and two years ago, my cousin died from a clot that traveled to her heart, just days after giving birth.

If I do have the disorder, is it possible that I will be on Coumadin for the rest of my life?

Would having children in my future be high risk?

Is it common to experience hair loss while on Coumadin?

Just the tip of the iceberg for my questions.

I wish all of you the best with your recoveries!!

Your posts have been amazingly helpful!

Marita 11 months ago

Hi, I'm back again - with another question. I've always had awful periods, so being on Coumadin hasn't made a whole heap of difference. After abdo pain recently, I found out I have an endometrioma (like a cyst, made up from endometriosis)on my left ovary which is about 5cm. My ob/gyn initially prescribed tranexamic acid 1000mg for 3 days during my period to try to relieve the heaviest days, but both times I did this I ended up in ED with chest pain, and the 2nd time the haemotologist in the hospital consulted with their gyn dept and told me not to take it again. 1st time I had pneumonia, 2nd time 'a flare up'/muscular-skeletal pain . Now my ob/gyn is talking about a hormonal IUD. As my initial PE was considered to be partially from taking progesterone only oral contraceptive, I'm just a bit dubious. I was only on the oral for about 8 weeks before the PE diagnosis - and I know, I'm on the Coumadin for now, but this IUD is supposed to last for 5 years, so what happens if I come off the Coumadin? Will a PE get me next time? Anybody else out there had this done whilst on Coumadin? And,any comments re IUD side effects??? The thinking is that the IUD will put me into early menopause, and the endometrioma will shrink.

I still have days where my chest really hurts, but I usually only get out of breath now when I walk a bit fast or far. My GP is sending me to a chiropractor to help with the chest pain - he (the chiro) says that the joint which connects the rib to the spine is stuck in position, and that's contributing to the pain. I've been for 4 sessions now, haven't noticed much difference, but his office is up some stairs and last time I was so puffed by the time I got up them I could see he was a bit surprised - I was having a 'bad' day. Has anyone else tried any chiro treatment? He hasn't managed to loosen up that joint yet, and it's costing me $40 a visit (and we're living on one part-time wage now, with 4 kids still at home, no easy matter!). My INR has been low (1.7) for the last 6 weeks, and the clinic is creeping it up slowly so as not let it get too high (should be 2.5 - 3), but I can really feel when it's low - my chest aches more. Plus I've been trying not to use the Seretide every day, I'm so tired of taking meds. But I'll have to use it, I'm not wheezing but I think not using it is contributing to my chest aching. It's been 5 months since my original diagnosis, has anyone else had this asthma type shortness of breath but not wheezing, even this long afterwards? I know when I went to hospital my oxygen sats were fine, why do I feel like I can't get enough air? Is it just me - I'm so tired all the time. And yes, I 'spose I'm having a whinge, but at least here I feel like someone will understand. Great as my GP is, I feel like he's a bit sick of seeing me!

Anwar 11 months ago

Found the article very informative. I had a PE in January, spent 6 nights in hospital, worst moment in my life, thought I was going to die. I spent another 6 days in hospital in February as my INR went down to 1.5, my range has been set to 2.5-3.

The one thing that bothers me is, my INR will not remain within range, and I still get chest pains.

On Sunday went to A&E and was diagnosed with cellulitis, hope this is not linked to my PE.

Recent PE 10 months ago

This was very helpful to me. I just spent 5 nights in the hospital and was released today with my blood being a 2.6. I'm 22 and birth control caused mine.. i have several. i just worry about them bursting

Worried Wife 10 months ago

Hi there,

Thanks for taking the time to write this, you have certainly been on a journey.

My husband was in an accident and developed bi-lateral PE's. This was approx. 6 months ago, he is planning to go overseas later this year and just had a thrombosis/ haematology clinic appoinment today and asked them about this, they advise two options - an injection (presumably a blood thinner) prior to getting on the plane and then another one within 4 hours of landing - then repeating that when he is due to fly home. The other option (which seems a little vague to me) was to not drink alcohol, wear pressure stockings and drink extra water. We are going to get a second opinion because these two options seem so far removed from each other that I'm not sure my husband has understood it all properly.

Do you, or any of the other readers, have any advice/ comment regarding flying (flight time would be approx. 5½ hours).

Scott 10 months ago

Excellent website, thanks for all the great information.

I returned home 5 days ago after spending 8 days in the hospital with PE. Simialar to others, I was released without a clear indication of what I could and could not do. This website contains so much valuable information. Thanks.

Bit of history... 37 years old, male, active marathon runner, and 100+ mile per week cyclist. No history of any medical issues. No injuries, no travel, no family history of clotting.

Six weeks ago, I spent the night in the ER, originally was diagonosed with pneumonia. Sharp pain in my right side. Was put on antibiotics and went home embarrassed to have wasted time and money by going to the ER. Over the next few weeks, the pain in my chest increased, and spread to my left lung. In retrospect, I should have went to see my PCP much earlier than I did, but thought I still had just pneumonia. I had to sleep in a lazyboy, as laying down at all was too painful. The final straw for me was waking up in the morning coughing up large clumps of blood. Finally went to my PCP, who immediately sent me to the hospital. CT scan indicated bilateral PE, Pulmonary Infarction, Bibasilar Atelectasis (collapsed lung), and DVT.

Its very scary when doctors are describing the clots in your lungs as "massive", "everywhere", and "worst I have ever seen". I know that my stubborness to go back to my PCP after my first diagnosis was probably a key reason why my clots were as bad as they were.

Couple questions:

I was scheduled to have a root canal during the week that I spent in the hospital. Obviously I missed my appointment. Is it ok to get the root canal done while on Coumadin? What precautions do I need to take? I just went over 2.0 INR yesterday. Will they let me off Coumadin to get dental work this soon after being out of the hospital?

Does anyone have any experience with increased liver function that occurs concurrently with PE? My PCP thinks it is a direct result of the Heparin I was on at the hospital, but my Hematologist thinks that is not the case. Any ideas?

With the pulmonary infarction, and bibasilar atelectasis, will I eventually recover full lung function?

ANDREA 10 months ago

Thank you soooo much for the wonderful information. I went to the ER 7weeks ago and found out I had PE in my right lung. I haven't been able to find much information on recovery and a time frame. I still deal with daily chest pain and feeling very tired. I get very frustrated about my chest pain and feeling of being always tired. I work full time and have 2 young girls and I am grateful that I am still alive to enjoy them, but I get scared about whether I will ever feel better.

Shiraz Shariff (Toronto, Canada) 10 months ago

Thank you so much for writing this. I tried bouncing back immedeatly, but often felt fatigued, particularly in the evenings. It's been 6 months, my heart rate is still a little high, particularly if I exert myself in any way. The anxiety was extremely difficult to deal with, but much better now. Your piece comforts me, knowing that the post-PE symptoms and anxiety I feel are not unique to me. Thank you again

Jemma, Leeds, UK 10 months ago

I'm in my hospital room at the moment, feeling like a bit of a fraud as they won't let me go home until my warfarin levels are right. This is my 7th night in, and not going to complain about been bored in here anymore as I'm lucky to be here.

I'd noticed for a few months I'd become very short of breath and I put this down to been overweight and thought a doctor would do the same. However I woke up with heart palpitations and very short of breath. I made an appointment with my GP who, said I was stressed and had a panic attack and prescribed beta blockers. not great really looking back as 3 days later I still felt very unwell and went to a&e. A fast thinking doctor had diagnosed me as having a PE within a few hours and started heparin injections. after a ct scan the next day it turns out I had bilateral PE - 4.2 cm each. A week on, I've had an ultrasound on my heart, which is clear, my oxygen levels were at a massive 99% and my pulse and blood pressure are normal.

Your page has been a massive inspiration to me as i'm struggling to think with how different things could've been. My consultant has mentioned I have factor 10 blood, and at least now I know this is something to watch.

Thanks again for giving me answers I so needed.

Anwar, Dewsbury, Uk 10 months ago

Just an update. Recently had sickness and diarrhoea. My INR last week was 2.5, went for a blood test this morning INR down to 1.5, very suprised, anybody else had similar problems. Now having clexane injections for the next 5 days.

Mike Prov 10 months ago

I had rotator cuff surgery on my left shoulder the end of January of this year. A couple weeks ago my left arm swelled-up like a spider bite. My doctor sent me to have dopler and I had a 6 inch clot. He set-up me up to go to a vascular surgeon 4 days later, but I ended up goig to the emergency room the night before my appointment. They did a catscan and found I had multiple clots in my lungs too. I was in the hospital for a couple days and they gave me lovenox and couamadin. After I left I was at the emergency room for 2 of the following nights for swelling in my leg which they couldn't find any clots. My better half continued to give me a couple shots of lovenox daily for 5 days which stopped this past Sunday. I started out on 5 mgs and on Friday doctor raised me to 10 mgs and my INR was 2.3 yesterday. I know what everyone means about the side effects and I'm a newcomer to this. They told me I'd probably be on this for 6 months and by then my clots should be gone. It's scary for everyone and I know what you mean by feeling paranoid about going to the ER. I've got something for anxiety, but I know pain, etc.. when I feel it like in my leg and lungs. I appreciate all your comments especially the positive one. It seems hard to get those. Thanks.

Abhilash 10 months ago

Measures to prevent PE:

* Exercise regularly and wear compression stockings

* Drink plenty of fluids

* If one needs to be stationary for long period, move around for few minutes each hour, move feet and legs, bend knees and stand on tip-toe

* Do not smoke

* Avoid crossing legs

* Do not wear tight fitting clothing

* Lose weight if over weight

* Elevate feet for 30 minutes twice a day

http://heart-consult.com/articles/pulmonary-emboli

Marita 10 months ago

Hi L and all, well, the last specialist I saw made me feel like an idiot. Told me flat out that there was no way that the PE was causing pain (it's 6 months now since bi-lateral multiple PE diagnosis). Well - no arguments, but I'm still suffering pain. I don't care what you call it, it's in my chest and it HURTS. Some days I can barely move. He also advised me to go ahead with the IUD. So - took my last dose of Coumadin on 31st March, have to go for a blood test end of April for genetic or underlying blood disorders. Apparently it takes a couple of weeks for the blood tests to come back, but at least I should have definite answers by the end of May. If any come back positive, or I develop another clot, it's back on the Coumadin for life. He suspects there may be something, due to a) a miscarriage many years ago; b) a huge blood clot I passed when 3 months pregnant with my middle child (now 19) and c) my 28 yr old daughter had 2 small strokes when 24 yrs old and 9 months pregnant. So - every time I asked the question whether my horrid clotty periods had anything to do with the clots in my lungs, I was told resoundingly NO. Sounds like they are to me... Anyway, don't know if it's because of the Coumadin, but had the IUD put in 3 weeks ago and have only had 2 days with absolutely no bleeding at all. So much for no more periods. Has anyone else heard that there is a new drug out to replace Warfarin, no side effects - but it's still too expensive so not properly released yet. The specialist I saw was practically foaming at the mouth with impatience for it to come out. Did I mention I also have FSH Muscular Dystrophy? There are a couple of scientists appearing here in May for a seminar, and my brother has organised for them to come and talk - I don't know if this is why it might be taking my muscles a bit longer to 'bounce back' but if I get the chance I'm going to ask them. Any other FSHD people out there with PE????

angel hope 10 months ago

Thank you so much! I have scoliosis and chiropractic hasn't been taking care of the discomfort behind my heart/ left lung, which impedes my breath and energy. I wonder if an embolism could be involved. I'm so grateful for all that u shared, as it offered me hope!

Anne-Pauline 10 months ago

Hi all, thank you for this forum with great information! I am Dutch and did not find an up-to-date Dutch forum, so I am glad I found this one!

March 7th, I tore a cruciate ligament in my left knee on the second day of my first ever ski holidays in Austria. The doctors prescribed "rest, cooling and more rest and cooling". My husband had to give me fraxi shots for 10 days. After those ten days, I did move, but apparently not enough...

Two weeks ago I entered the hospital with all the complaints you guys already described; shortness of breath, heart palpitations, pain in the chest ánd a swollen left leg. I had a clot in my left leg (found through echocardiogram) and they highly suspected PE. They did not make a CT-scan to determine the latter, because the acenocoumarol would treat the clot in my leg, as well as in my lungs.

Each time my INR is good, but I take 2-3 tablets a day.

I still suffer from fatigue and sometimes I feel pressure in my chest, but I am trying to recover as much so that I can return to work for a couple of hours a day.

@LWELCH: vomiting and diarrhea cause loss of fluids, this also takes place in the blood vessels, so your blood becomes thicker. For PE patiënts this is risky, of course - contact your GP/physician in this case!

Julie 10 months ago

I must tell you how much I appreciate this site - the only one like it that I've been able to find. I refer to it often when I'm experiencing fatigue, just as a reminder that PE is serious and one doesn't recover overnight. Mine was in December following major abdominal surgery a few days prior. Since then my INR and dosage have been perfectly stable at 5mg, so no worries there, but whenever I experience a bout of fatigue, indigestion, or any minor ailment I tend to worry excessively about a recurrence or some kind of bleeding, neither of which has occurred. Like you, I can sleep until 1:30pm, and energy level can range from being able to walk a mile on the treadmill to becoming exhausted from a short walk. I'm curious to know why you were on Coumadin for one year instead of 6 months, which I thought was the usual recommendation. Also, did you experience withdrawal symptoms of any kind when Coumadin was discontinued? This worries me, too. I'm glad to know you're still active and feeling well without the need for medication. Thanks for such an informative entry.

Paniolo Bill 10 months ago

This forum has been very informative and I thought it is about time that I shared my personal story.

I am an active senior citizen who has not visited a doctor for an illness in forty years. We have a small ranch and I do ranch chores and ride horses every day as an amateur western performance trainer.

In the weeks before my "episode" I developed a very nasty cough. I coughed so hard that I thought I cracked a rib on the lower right side of my chest.. Having had that injury in the past, I knew what it felt like. At night, while lying in bed the pain level was determined by whether I was lying on my back or on a side. The right side was the worst and sometimes the pain would pulse like a muscle cramp. After some days the pain subsided and then it recurred in a different location. Then it would subside again

I then began to notice that activities that normally were non stressful would cause me to be a bit out of breath. My internet research on the symptoms seemed to point to pleurisy. I went to a doctor and he ordered a chest X-ray. The X-ray came back with a small area in the right lung that he said was either an old scar or fluid. He gave me antibiotics and said he would order another X-ray after the course of antibiotics was complete.

On February 5th of this year at 3 AM, with three days of antibiotics left, I ended up in the ER with chest pain in the sternum area. The pain was different from that which I had previously experienced as it was in the center and did not change when I changed position. Thinking I might be experiencing a heart attack I took two aspirin and asked my wife to drive me to the ER.

In the ER they asked if the pain was worse when I took a deep breath. I answered in the affirmative and the doc said that was good news as it probably was not a heart attack. They drew blood and and ran an EKG. These tests were normal. The ER physician and nurses were perplexed as I appeared to be a very healthy individual. Finally the doc ordered a CT scan and advised me I had bilateral PE.

I was admitted and given Lovenox every twelve hours. They drew blood every few hours and I had multiple EKGs. I could not lay completely flat as the pain was worse in that position so I slept sitting up. I was visited by a pulmonary person and had multiple echocardiograms. All normal.

By day two in the hospital I was feeling better and the pain had markedly decreased. I had a 24 heart monitor while in the hospital and on the second day a nurse they came to my room and said I had what appeared to be an atrial fibrillation. I didn't feel anything. I then had an echocardiogram. The cardiologist read it and the results were good.

After two nights in the hospital I was released and went home. While at home I wore a Holter heart monitor for 24 hours. Results of the Holter were normal. No A-Fib. My wife administered the Lovenox shots in the belly every twelve hours and I drove to town for a daily blood test. The Lovenox was discontinued after two weeks, a happy occasion. I had started warfarin in the hospital and at first the GP doc said I would be on it for three months, then it was six months then it was perhaps for life. The chest pain and the cough went away after a couple of weeks.

However, recently I am getting fatigued. No cough or chest pain, just tired. I believe it is the warfarin. I am taking 10 mg per day and am now down to a blood test every two weeks.

When pressed for the criteria for warfarin duration I cannot get an good answer. The latest comment was that since they cannot determine where the clot came from they are concerned that another will form.

As one who has never taken prescription drugs, I am loathe to continue this regimen and plan to get off of it as soon as possible. I am reasonable sure that the ingestion of warfarin is responsible for current symptoms and that it can be supplanted by vitamin E, ginkgo, garlic, etc.

Natalie 9 months ago

I wanted to thank you for this article. I was hospitalized March 10 with blood clots in both lungs. Luckily, I was discharged on March 14. While in the hospital I suffered, not only from the pulmonary embolism pain, but severe anxiety. I returned to work just this week. And while I was home, I researched & researched. I couldn't find very much information regarding the actual recovery from a pulmonary embolism.

I kept assuming that since it had been over a month since my hospitalization that I should be feeling better. I had myself convinced that the pain that continued was all in my head. But you have put my mind at ease. I still feel far from 100%, but I do feel a little better & stronger every day. It was very comforting to read that other people had to be put on anxiety medication too.

I still have a fair amount of discomfort when I breathe, especially when I take deep breaths. I find that when I laugh I have horrible coughing fits & often cough up blood. The Dr's kept telling me that this recovery is going to be long road. I guess this experience is going to teach me patience - something I generally lack.

Thank you for all of your insight. You have put my mind at ease. I now know that it's ok that I still don't feel well. But the important thing is that I am getting a little better everyday.

DiNMontana 9 months ago

This is a great site. I have lots of questions that the medical field can't answer. I feel worried all the time.

I got diagnosed with a PE in December, 3 weeks after a hysterectomy. I didn't have blood clots in my leg but threw the clot from my pelvis but now that I think about it, my mom always wore "the stockings" and talked to me about "vein thrombosis" decades ago. I'm supposed to be done with my coumadin episode sometime the end of May of first part of June and I'm so worried about having another PE.

I have been so sick since November, 2 UTIs, a sinus infection, pneumonia... I'm am in pain again, running a fever, shortness of breath, my ears are ringing and hurt so badly, my ribs hurt and I have moderate pain between my shoulder blade. I just finished a a 4th round of antibiotics since November for a sinus infection 4 days ago. I have never been so chronically sick in my life. Its discouraging. I'm at that place where I can't walk up a flight of steps again without breaking into a sweat. so... Well, I know I need to see the doctor and I have an appointment in a couple of days. I don't even know how I'm going to get to work tomorrow. UGH!!! The nurse said it sounds like pneumonia again or still. And that was a relief because I was researching whether or not I could have a second PE while on an anticoagulant. YIKES.

I have learned some weird breathing skills to help me get through a sentence or two when I'm on the phone. I'm worried that I've grown accustomed to all that weird inability to breathe and aches and pains so I'm not so aware when something is wrong.

So have some of you guys been super sick over and over again???

cindi 9 months ago

ty ty ty... i found info on what pe is and how u get it but this is all i could find on what to do and expect afterward... ty for sharing and i wish u good things always..... ty

DiNMontana 9 months ago

I had a chance to read more of what others have posted here. I am actually going to my doctor for the first time since my first visit just after my diagnosis in December. I had actually gone in to see him because I wasn't feeling well, he wanted me to have an ultrasound on my gallbladder. The ultrasound tech had the radiologist come in and he ordered a CT scan after talking to me and then sent me back to my doctor.

So from there I bought the Lovenox shots from the pharmacy, my 19 year old daughter administered them to me, then started the coumidin. I was treated at an urgent care clinic for the pneumonia a month later because I couldn't get in to see my doctor (I felt like I had to work instead)...

So I've learned I'm not a good reporter. I should have described my pain as excruciating and that I was coughing up blood. Nonetheless, I have not been told much about this problem. I did have an ultrasound on my legs, it says negative for DVT on the lower extremities. I was told that they thought the clot was thrown from my pelvis after surgery but I don't remember an ultrasound being performed on my pelvis. Is that still considered a DVT? Do I need to be concerned about that in the future. And if it isn't that, then why did I have clots? I'm getting a little concerned about being turned loose in 5 weeks and I really didn't have the medical care that it sounds like a lot of other people had on this site and no answers as to why this happened. I'm 45, non smoker, average in every way. There are words in my report like infarcts and pleural effusion, but the embolisms are small? on both sides on straddling lower lobes... he did tell me that after the coumidin is gone I wouldn't need any follow up. Do you think he was just kidding?

So I'm going to see him tomorrow because I'm having some minor pain in my back and under my ribs again. Not as severe as the first time, low grade fever, etc. Nurse thinks its still pneumonia. Oh, shortness of breath too. I'm wondering if I should be insisting on more from him than what I'm getting and if maybe I should be seeing someone else? Like a hemotologist? Or maybe I'm having separation anxiety.

DiNMontana 9 months ago

Oh thanks for writing back. It definitely makes me feel better. I don't know how many times people either tell me "you could have died" or they tell me about someone they know who did die from a PE. UGH!

Well the diagnostic tests I had were the ultrasound on my gallbladder to rule that out, the CT scan, the ultrasound on my lower legs. That was it. Oh and an Xray on my chest because I complained of chest pain first. I walked into the dr's office, down to the xray lab, drove to the imagining center, waited there for hours, back to the doctors office, over to the pharmacy, back to the ER to get instructed on how to administer the shots, then home, it was quite the day but it was better than being hospitalized.

I live in the sticks and ya never know. So knowing what the actual medical course was for this is kind of foreign for me. I was pretty grateful they didn't make me stay in the hospital. I am looking forward to going into the doctor tomorrow though. I'm pretty sore and I'm breathing pretty shallowly because it hurts.

So what would you say if I said that I've had similar symptoms but not as severe to this before and then they went away? Can one have an PE and just not know it?

Alright, I'm done wondering about this for a few days. Thank you for this website!!!

NoelCD 9 months ago

Thank you for this site. Got home a week ago from a 4 day hospital stay with a PE in each lung and 1 in my right calf.

Every one is right there is not much information online. Thankfully, I am blessed with a very caring & informative doctor. But even after asking my dozen or so questions, I have more and more while I am at home and I do not see him again till Monday.

Marita in Aus 9 months ago

Hi L, and DiNMontana, boy do I get how you feel. I've been off Coumadin for 5 weeks now. Felt like I was coming down with a cold 2 weeks ago, nothing serious at first, but I still get pains around my ribs & back which I'm told are muscular-skeletal, and I do NOT want to be a hypochondriac, but it is really hard sometimes. The 'buggy' feeling got worse, and my heart was pounding for a few days, then on the weekend I was a mess. Went to the doc on Monday with shortness of breath, a 'spot'that really hurt to touch on my rib, coughing (not bad), and a resting heart rate of 102. The heart thing scared me, and he talked me into going to the hospital 'just in case'. I went shopping on the way home and had terrible stabbing chest pains so decided he was right. Well, didn't I feel stooopid...yes, my heart rate varied from 100 - 117 while I was being monitored - about 6 hours. Had another CTPA - no new clots (yay!), no infections, no heart damage (relief). But no explanation for the heart rate. So I got sent home with orders to eat & take 2 nurofen, come back if the pain got worse. Oh, got my first ever migraine on Tuesday (please god, let it be my last), shocking nausea on Wednesday morning. Lung function test with histemine came back as borderline/negative for asthma from a couple of weeks ago. Well great, but I really want to feel normal again, and I'm still feeling out of breath just standing doing the dishes or chopping vegies. Thought I was going to faint this morning, and my heart rate was 97 when I got out of bed, went to 120 which was when I felt faint and really nauseated. I used the ventolin as I couldn't breathe, didn't make any difference. Can a CTPA be wrong? My dr wrote me up for a ecg this afternoon, and I have to get a halter monitor fitted for 24 hours, but I think that only works if it's palpitations, not exactly what I'm experiencing??? Has anyone else had this type of thing happen? I'm trying so hard to normalise my life, and failing miserably lately.

'L' I really admire and appreciate you taking the time to read and answer - have you thought about publishing? As a survivor of PE. From the look of how many people find you, imagine all the ones out there who don't, and would be relieved to read all of this. It's such a relief to realise that there are people going through similar stuff, of all age groups. It feels quite lonely when you look normal but don't feel it. It isn't like an obvious injury that people can go 'oh look, he's got a broken leg'. You just never know.

amber 9 months ago

I just want to say thank you for posting this info. I just left a 15 day hospital stay after finding 4 blood clots in my lungs 2 on each side. there is no info out there and i have been struggling. I have been out of the hospital for 1 week and the difficulty breathing and chest pains, headaches and backaches are terrible! i am 33 and am struggling with the anxiety and depression. I mad that this scary life altering thing has taken over my life but your article has given me some peace so thank you again!

HarleyGeorge 9 months ago

It is 3 weeks today that I was diagnosed at the hospital with PE in my right lung. I am 35, and had been having slight trouble breathing and mild to moderate chest pain for about 3 weeks prior to diagnosis, thought it was just a chest infection. I'm glad it was caught and that I am being treated with the medication. I am just frustrated that my breathing hasn't gotten any better, still can't get a full deep breath without struggling. My chest and mid-section feel tight and constricted. I know it might be stress and anxiety that is adding to my breathing trouble. I don't see the thrombosis specialist (with another Lung Scan) until the end of August. Will this breathing trouble and chest pain eventually improve??

kent engelke 9 months ago

February 2009 I had a tib/fib fracture, the result of a sking accident. I was rodded, screwed, and glued but was not put on blood thinners.

Approximately four weeks later I had several PEs, intially ignoring the pain thinking that they were kidney stones. Long and short the mortality statistics I was given when finally went to the doctor were frightening at best.

I was active marathon runner/triathete/adventure runner.

It has now been 26 months since my PE and through hard work and determination I am competing in a half ironman.

Like many, I battled shortness of breath (diagnosed with plurasy), chest pains, fatigue, etc.

I ignored or did not beleive any negative statements made to me by my doctors.

I was determined to overcome. While I am still not back to where I was, I feel confident that I can again be a competitive athlete and again qualify for the Boston Marathon.

Don't give up!!! You will be amazed at what the body can due! Don't be limited by any self prescribed limitations.

I have overcome major pulmonary issues AND major skeletal/neurlogical/muscular issues (told when broke my leg there would be a 50% chance I would not be able to run again)

Believe in yourself and you will overcome and live the life that you once lived!

Kent

P.S. My belief in a higher power is greater now than ever because it is only by divine intervention I survived both the sking accident and PEs. I must also write I am a managing director of financial organization that was experienced the brunt of the financil crisis, the financial crisis that occured at the same time as my health issues. NEVER STOP BELEIVING IN YOURSELF OR A HIGHER POWER. YOU CAN AND WILL OVERCOME. I DID AND SO CAN YOU!

Panioloflyer 9 months ago

Great story. Thanks for sharing. I too have been pushing forward, doing more and more to gat back the capabilities I once had. My PE was not as severe as some so it has been a bit easier to attain meaningful progress.

Thanks again

Tj 9 months ago

Things get better! An update here. It's been about 5 months since my Acute left pulmonary emboli. Five months on warifin. One trip back to the ER with that pain in the back. (determined to be muscleskelital) Fibromyalgia flare ups were much worse than before(the feeling of swallowing a knife) but have calmed down. I've learned to work with tylonal and tramadol when needed. The medical profession gives mixed messages. Do I stay on it for life, or go off it since there has been no reason found. I slowly began my outdoor activities (wearing protective clothing) In March I did two strenuous 4 hour hikes in one week. This weekend I kayaked a river for four hours. Yes you have to protect your body and avoid branches and briars but you can get your life back. I always wear gloves for yard work now, should have anyway. Anxiety does diminish. I have slowly begun to add the foods that are good for me back into my diet as well as some of the supplements I used to take. Suddenly I'm being told they will work aound me. Someone told me of a Coumidon Clinic Nurse in another town that is more of a specialist than most when it comes to blood thinners. If I speak with her and get any new information I will share it. My nurse at the Hemotology office has a blank stare when I ask questions. As many in the medical profession do. I still hate the fear of banging my head or tearing my leg open, but I do have some lack of worry about getting another clot.

HarleyGeorge 9 months ago

TJ and Kent, congrats on making so much progress. I'm going to try and stay positive and hopefully I too can recover as nicely over time. Thanks for the insights.

Dawn 8 months ago

Thank you for sharing your story. Most of us go into this very scary experience completely blind and get a lot of mixed information, so we don't really know what to expect.

I'm about 4 months post-diagnosis, in my case it was a massive (whole left leg) DVT and multiple bilateral PEs. I started out the first month needing a wheelchair and by the next month graduated to a walker. I was in tremendous pain for those first two months and slowly weaned off the vicodin. I have to take the coumadin for 6 months, then they'll run a battery of tests to see where I'm at. At the moment I still experience "crashing" fatigue and bouts of SOB. I like to think I'm getting better. Even though it doesn't always feel that way.

Dom 8 months ago

I am amazed at this site. Why is this the only resource available for recovering PE sufferers? I had massive bilateral PEs three months ago yesterday, following a broken ankle and a large DVT in my left leg. I just avoided having a thrombolectomy (where they stop and retart your heart) and was treated with clotbusting drugs (streptokinase) in a CCU. Heparin and this saved my life and I am now on Warfarin. Since then I have developed a strange condition that only seems to exist on this site!

What started as a feeling of general unease in my chest, with palpitations and fatigue, has now become chest pain. It's not too bad but it is worrying and...yes...worry makes it worse. This is not good as I have a high pressure job and though they were sympathetic when I was in hospital, they expect me to get better, not worse! I have had three follow ups - at the first one I had to insist on an echocardiogram, which turned out to be normal. The cardiologist just kept saying "come to the ER if there's a problem, as you're ECG is normal". But in the end he arranged for the echocardiogram. Blood tests then came back with high cholesterol and I have suddenly developed very high blood pressure (190/110) which he precribed me drugs for. I'm also now on anxiety medication. The third visit was by me to the ER once I started having the chest pains. This just confirmed that my blood pressure was high but tests, including D dimer and x Ray, were normal. The thing is I am doing cardio exercise every day for 25 minutes and swimming about 1000m four times a week. I am very overweight but I am losing weight, have stopped all alcohol and never feel better than when I am exercising. My chest pain comes from sitting down which suggests it is not caused by my heart/arteries. As soon as I do something it goes away or lessens. When seated, I never actually take faster breaths but I feel my airways are constricted sometimes. I know that this could be psychosematic but that doesn't help much. Does anyone else have this? As I do swimming I am hoping that this is just my soft intercostal muscles getting a reconditioning and aching as a result, but sometimes I think the pain is deeper than that (and anyway doesn't muscle pain eventually resolve?).

On top of this - despite a lack of feedback - my doctor told me that my PEs were so serious I should not fly for 6 months at least and possibly up to a year. That's tough because I live in Hong Kong and my kids live in England. But I can find no reference to this anywhere (although the cardiologist explained it was due to low oxygen saturation at altitude, whichy could cause rapid deterioration if my lungs were damaged - something which he said was impossible to assess).

When I stand back and look at all of this it strikes me that the medical profession really doesn't understand this condition very well. They know how to save your life. And I am grateful for that. But as to enabling you to make a full recovery, they really don't have much to say. I'm now realistic. I had thought after 3 months with a change of diet and an exercise regime I would be fully recovered. Now I know it will be much longer.

The strange thing is that I am fitter than ever but have this tight/constricted chest from time to time (but every day). So now I am settling in for the long haul. I am hoping for full recovery after 10-12 months. The psychological damage is immense. It just deflates me when I think of my future. Even though I can swim a kilometre in just over 30 minutes I have this self image as a disabled person. I have lost my career ambition and want to retire at the earliest opportunity (I am only 47) as mid afternoon at work I am tired and in discomfort. Any pressure - even nice pressure - leads to pain/tightness. I just don't feel up to ambition or dreaming. Why is there not more help when you consider how many of us are having these anxiety issues?

Kudos to lwelch for this site!

kent engelke 8 months ago

Dom

I just logged onto the sight following an email from another reader.

Like yourself, I had incredible chest pain that went away via exercise. Fortunately my doctor and orthopedist are both triathletes/adventure racers/marathoners that I had competed agianst.

Their advice was straight forward...relief of tightness via excerise is not blockage.

As I had already noted I am a managing director of a financial organization that bore the brunt of the issues of 2008-2009.

My doctors stated my chest tightness (ok pain) was a combination of the anxiety from my job and trauma.

Exercise was pivotal in overcoming this anxiety and was a major reason why I also overcame shortness of breadth.

Keep pushing forward. It will get better because we are determined to live our lives to the fullest. Life is not a spectator sport. Don't give up. Don't be limited by anyone's self prescribed limitations.

You will be surprised at what the body can do!

Kent

Dom 8 months ago

Kent,

Thank-you. That message has really helped me.

I'm lucky actually. There are people on here with worse problems whose positive attitude is inspiring. I started feeling a bit sorry for myself. Thanks for snapping me out of it with your support (and thanks to the person who e-mailed you).

This site really restores your faith in people!

Let's all keep going...!

Dom

Laurie 8 months ago

Thanks for all of the information. I had a PE a couple days after coming home from the hospital after having a hysterectomy. I was a smoker! I have now quit! I often have pain in my legs and cannot get it to go away. I have had pain in my legs prior to surgery and PE! I have told my doctor but he did not seem to concerned. Shouldbinbe having this checked out further? I am now on Coumadin and Lovenox injections. I experienced anxiety since finding out about the PE and was taking Xanax, but I stoppedbthe Xanax because I was told that it is addictive. I have not smoked in over a week but I have to admit is very hard with all of the other stress added. Does anyone else experience constant lower leg pain?

Cara 8 months ago

Hi,

I been diagnosed with both portal vein thrombosis as well as pulomnary embolism. After a five day stay in the hospital with Lovenox and Coumodin, my INR was above 2.5 and I was sent home. I have been having low grade fever (99 to 101 which keeps fluctuating. I feel quite tired and the back of my neck, my shoulders and head hurt. I have a cough and am not able to breathe to my full potential. They also said I am anemic with iron and B12 deficiency. Did anybody have similar effects and should I be worried about the fever. The docs said that i could have tylenol every 8 hours.

Rebecca 8 months ago

Some great encouraging comments here...and again, a lot of relief to hear that other people are experiencing similar things!

I posted about 4.5 months ago now. I had a pretty great recovery for the first 2 months - back to light exercise and everything - and then I got a respiratory infection just under 2 months ago. Since then, and despite 2 rounds of antibiotics, it's been a huge struggle. I have almost constant chest and back pain, mostly between my shoulder blades, and zero exercise tolerance. Taking a 15-min walk around the block is really difficult, and means more pain, coughing, shortness of breath and generally feeling like crap. Lwelch, my doctor did say my cough sounded asthmatic so I'm going to get that checked out! Also seeing a cardiologist next month to rule out any heart issues. (That's my biggest fear - how common are heart problems after PEs?)

But it's hard not to feel discouraged and permanently "disabled". I can no longer do all the things I used to love doing...hiking with the dog, walking to work, going to the gym, travelling. And my husband and I can't even think about starting a family anymore. Hopefully things will get better. At least I can work!!

Bob 8 months ago

I'm a 49 year old male from Australia.

I woke up with chest pains and thought I'd pulled a muscle. The next day I could hardly breath. Went to the emergency ward and they told me I had a large clot in my left lung. I'd had multiple smaller ones in both lungs 12 months before and was on blood thinners for 6 months.

It's been two months since the clots and I still get chest pain and very short of breath. I haven't been back to work and I don't know when I will. It certainly didn't take this long to get better last time. Until I read your article and other people's comments I thought I was going mad.

I can't thank you enough for sharing your story. It's great to know that what I am going through is 'normal' and that there is an end to this.

Thanks

What a relief

Anwar Dewsbury, Uk 8 months ago

Hi, hope someone can help. Had a PE in January been on warfarin since. My last 3INR have been 1.2 to 1.3, prior to that they have over 2. Not sure what's happening, currently taking 11mg daily. Spoke to the warfarin clinic, they don't seem worried as I am due to come off the tablets sometime in July.

Shannon 8 months ago

I was 23 years old when I was rushed to hospital after fainting twice in a row, and on the 2nd time, lost consciousness for what seemed to my fiancé minutes. I couldn't take a single step without loosing my breath, and was so scared.

I just passed my 1 year since diagnosis. And as of three days ago, I am now off coumadin (the brand of warafin I was on). I am finding it slow going, and read that you can suffer withdrawal like symptoms, and I'm feeling them bad today!

I am so happy to be here :)

STEVE1973 8 months ago

I would add a brief comment to the very well observed posts. My experience was a real shock to me. I was training for a marathon and made the mistake of believing my GP that I was fine to travel long haul with a chest infection.....big mistake. Some 4 months after I returned, I collapsed with a suspected torn aorta and was half an hour away from open heart surgery when the CT scan revealed the PE. After a week in hospital unable to move and slowly buidling up my O2 levels I came out nd what followed was a long but ultimately successful recovery. I had 6 months of warfarin, an effective but side-effect laden drug which burdened me with sharp headpain, chest pain, palpatations and stomach pain. Although it was tough to discern where the warfarin stopped and the PE pain began, I had a marked improvement when it was withdrawn. That said I had 7 months in surgical stockings due to the leg pain and pain around my genitals. When that became unbearable [month 6-7]I took them off and noted an immediate improvement. Their therapeutic properties had now passed and I was on the way. It is now 14 months after my experience. It was a long road and one where I was convinced I would never be without pain. The three things which have been instrumental in my recovery?? [1] Rest [2] compression stocking and [3] and in my opinion the most dramatic....a high dose of serrapeptase. I was given this by an alternative health practitioner [I was a sceptic]. This is an enzyme found in silk worms apparently. It has healing properties of low and behold...the vascular system. I took this for three months intensively and still take a low dose. The pain is now gone and I am back training for that marathon, this time without the long haul flight.

Do not think that you are alone or that you will not recover. What worked for me may not help you but I now feel normal again after convincing myself I had a life of pain ahead of me at 35 years old!

Sharon 8 months ago

What a great site! Like so many here I was looking for recovery info! 17 months ago I had sepsis ended up in ICU for 3 days and spent 3 weeks in hosp. In Mar of this year started feeling short of breath, got worse wnd worse until I couldn't take a shower without stopping several times to catch my breath, back and forth to Dr no answers! Went to see dr specializing in lungs (?) He sent me for CT and I was told I had significant bilateral PE's (they called them horse shoe? Up one lung across and down the other one? )Rushed straight to ER and spent 18 days in hosp, INR was ok but O2 sats were 83% on room air for awhile, that's what kept me in hosp. Now I'm home, on wafarin, INR is good but I'm still short of breath and scared to death!! I had no surgery, no DVT's and they have no idea what caused my PE's! Will be going to see hematologist and back to lung dr ( he called me tough when he saw me in hosp the next day, I think he was suprised I wasn't dead or hadn't shown up in the ER a long time ago:( ) I'm afraid something really bad will happen, although I feel better being on the warfain but am scared about what will happen when I stop! Thank's for the info I'm glad that the tiredness (which wasn't better since sepsis) Is a part of this and that it could take a year. It seemed like I wasn't getting anywhere fast! but now no this can be normal:). Like other have said it's hard to find that info on recovery, I found the same thing about sepsis, no recovery info...if you know of any sepsis info let me know:)

Sharon 8 months ago

Forgot to add to above:) I had symptoms in Mar, but not diagnosed until May, hosp May 6 so it's just been a couple of weeks since d/c from hosp.

Thank's

Duane 7 months ago

This is a wealth of info. i am a or was a healthy 43 y/o male. I just had a 5 day hospital stay for PE's. It took msny doctor and ER visits for them to find them. Its been 3 weeks now and I still get weak quickly. It seems like some days are better than others. It is very frustrating. I was very active pre-PE, I have lost some of the muscles I built through weightlifting. Finally getting my appetite back. Is this the NORM???

thanks for the help!

Rebecca 7 months ago

Hey Duane, that is totally normal. But be prepared for a longer journey to recovery...it can be really hard when you're used to being active. I did regular weight-lifting & cardio work pre-PE, and now at the 5-month mark I am still at the "slow walking" stage. Going to try isolation exercises too, to build up muscle again. But the reality is (as I'm discovering) that getting back to my normal athletic pursuits is going to be a long tough road, with lots of pain and discouragement along the way. Hang in there.

Dom 7 months ago

I am at 4 months today. Without exercise my lungs start to ache and so I work out twice a day (once in the pool and once in the gym). I am the fittest I have been for a long time but worried about long term lung damage caused by the PE.

My doctor told me not to fly for at least six months and that I would be on Warfarin for a year minimum. He said my DVT PEs were massive. But at my last visit he said he didnt need to see me for 2 months as my recovery was good. He said reason for not flying was not a risk of clots but that the cabin pressure is the same as at the top of a mountain and I could get into breathing difficulties. He also said that there was no way to know if my lungs were damaged or not as there was no reliable way of scanning lungs. This all sounds fishy to me. I live in Hong Kong and there is very little culture of challenging your doctor. He takes it as criticism when I ask him questions - and replies that "any doctor will tell you the same". You are supposed to just do as your told no questions. I would go private but he is a cardiologist in a top hospital which my "private" GP has recommended. Has anyone else been given a flight ban? Can anyone shed any light?

Rosanne 7 months ago

I never had high blood pressure before my PE of 18 months ago. Drs. told me hypertension has nothing to do with the PE. I had my pharmacist run a "possible reaction" list for the 3 meds. I'm on and guess what-Warferin can cause severe hypertension rarely. This reaction is not in the booklet that came with the med. Now I will have to approach my cardiologist with this info. I'm hoping there will be a dif. med I can take in replacement and hopefully the hypertension will go away.

Dom 7 months ago

Rosanne

I had very high blood pressure (190/110) even after medication. This was when I had chest pains and went to the ER. Maybe this is due to warfarin - it crossed my mind - but it was also possibly due to me being totally stressed out with worry. But it has reduced now. The Emergency Room doctor told me that BP taken at the hospital was largely useless as patients stress levels push it up. He suggested buying my own machine and taking it when I was calm. It seems to have just lowered by itself now I take it at home (I'm still on anti hypertension medication). I think a lot of the high BP is psychological: based on how anxious you are. Post PE is massively stressful, so it might be this. If there is no alternative to warfarin available (I assume you don't want to take Heparin injections) then I suggest you just ask your doctor to give you meds to control your blood pressure and monitor your BP at home until the meds bring the BP down. It should be possible for your doctor to get your BP down to normal levels with drugs.

Brannon 7 months ago

I am around the sixth month marker post PE treatment and my lungs still feel very weak. still have shortness of breath, racing heart, and my vision tends to white-out when my heart rate rises. Does anyone else have the white-out vision problem?

DiNMontana 7 months ago

Roseanne, I'd really like to know what you find out about the blood pressure issue. I had very very average blood pressure and now I have high blood pressure after taking Coumadin. I've been off of it for 3 weeks now. Going back to the Dr. tomorrow so I'm interested to see if my blood pressure has decreased.

Jenny  7 months ago

I must add my thank you for this webpage and all these comments. I stupidly got on a flight after a week of being in bed with a respiratory infection, with a fever and having some sort of reaction to something (still unidentified) which caused a severe all over rash. I was pretty ill anyway and then I got multiple PE's because of that flight.

I am home now after 2.5 weeks in hospital and was expecting to be able to do so much more. The psychological side of it is the hardest. Someone mentioned dread and that definitely was the key that sent me to my GP who sent me to ER. Now I just have this anxiety that I will never be properly okay again and the frustration is enormous! But hearing everyone's stories is motivating, comforting and reassuring.

Thank you to everyone here who has been so open and clear about their experiences. I am going to stop beating myself up and just take it a day at a time. Thank you

buddyboy54 7 months ago

as a relatively healthy 56 year old male,I was recently hospitalized w/dvt and pe in both lungs. I spent 4 very miserable days in the hospital,had the worst possible experience with a doctor in my entire life. I arrived at hospital at 11 p.m. by ambulance because I could not get my breath and had the most unbearable pain under my right arm, after 2 ekg's anumber of blood tests including d-dimer,which indicated p.e. ,a cat scan w/contrast confirmed significant blood clots in both lungs.Upon admission to the hospital at 6 am saturday morning ,nurse told me that I would have echo done on my heart and dopler study done on my legs that morning. The echo did not happen until late in the day on sunday and the dopler on my legs did not happen until monday morning,so for over 60 hours I had no idea where this blood clots had come from. I was very upset with the doctor and the PA that was supposed to be my care takers. I was om a heparin drip for several days in the hospital and was allowed to walk around on the hospital unit w/my i.v. machine in tow. After reading many posts on this blog it seems as if I should have been restricted to bed rest until the cause of the clots discovered. The more that I read,the more frustrated I become. I feel as if the doctor and pa could have cared less about me. They gave me no guidance,no encouragement,the doctor actually never physically touched me. The most frightening part of the entire experience was lying on a gurney in the emergrncy room,having a doctor that you have never seem before,tell you in broken english"you gonna be on coumadin for rest of your life". I have run the gammut of emotions from breaking down and crying,which by the way is something I was taught not to do at a very young age, to screaming in anger at someone that works for my insurance carrier. The emotioms are still very raw at this time,me left leg is very swollem so I have begun wearing compression stocking on that leg,seems to help w/the pain. all of this happened on 6/17/11 thanks to all that contibute to this blog as it has provided more info than any doctor or medical profession as to date for me. Sorry if I have rambled,my mental capacity seems to have been affected to a signicicant degree as well as my physical health has suffered greatly.A sincere thanks to all of you folks and God Bless

Gee Fav 7 months ago

I'm so happy I found this story!!!! Thank you soooo much for sharing. My mom was just diagnosed with PE on 7/11/11 after a surgery she had two weeks prior. She suffered with a fever for a week before she went to the hospital where they told her she had 2 blood clots on her lung and 1 in her leg. I really needed to know what to expect. This is going to be a very long journey but I'm glad I had some insite on what to expect. She was given Heprin after her surgery which caused an allergic reaction which decreased her platelet count. She was given Argatroban yesterday which is suppose to run for 24 hours. I'm praying everyday that she has a speedy recovery!

Murph 6 months ago

Thank you for writing this......I just got home from the hospital 2 days ago......your story ..up to this point anyway....is a mirror image of what happened to me.......now I have and idea of what the next year may hold...thanks again.

blessedPEsurvivor 6 months ago

Thank you! Thank you! Thank you for sharing your story. It has helped me more than anything else I've read thus far. I have been out of the hospital 5 days now after suffering 2 PE. You have so much valuable information and I appreciate it so very much. I've pretty much been numb since the diagnosis. Everything has happened so fast and I've yet to deal with my emotions. This has really helped me know that I can survive this and there is hope. My pulminologist says I've got a long road ahead of me, but I feel like I can handle it now. Thanks again for sharing your story...I am very grateful!! God bless you!

Ramona 6 months ago

I wanted to know since writing this how have your symptoms come and gone... I've been off Coumadin for 4 months now.. And along with the coming and going of anxiety I still have times where I literally sit and wait out an anxiety attack.. Heart races, I get light headed and dizzy... It's almost to the point where I keep my discomfort to myself because I know there's nothing any one can do... My good days far out weigh my bad days... But my bad days suck!

SJ 6 months ago

As many before me has said, this is a wonderful site. I am a nurse and have been for 40 plus years. I, as a clinician, had no idea what a pulmonary emboli would do to your body and mind. I am a workaholic and have been off work for 10 weeks. I know my body needed to recover, so I have tried to be a "good" patient (most nurses aren't good) and do as my doctor has instructed. I am now ready (think I am) to go back to work starting with half days. The reason for searching for this site has been due to the issues of dealing with my company's carrier for our Short Term Disability (STD). They will approve for a few weeks and then I have to have the doctor(s) submit clinicals explaining why I am not returning to work. I now understand that they (STD associaties) know probably less than I know about the recovery time and what we go through during the recovery. There are no resources for them to reference. I keep telling them I have shortness of breath, pain on breathing (dyspnea),tachycardia, lighheadiness and fatigue doing activities such as showering, dressing, etc. I get the feeling from them that they think, my symptoms are in my head. I do have some depression and anxiety along with the other symtoms. Reading the comments I am also realizing that I have other symptoms as well, the abdominal pain, shoulder and back pain and especially the sweating at night, which are related to the PEs. My pulmonologist and cardiolgist both have told me it would be at least a year before I really begin to feel like I did before the PEs. Until I read everyones postings, I did not want to believe it would take that long. I had large, multiple PEs in both lungs. I had a "stupid" moment and traveled (for work) 2 weeks after having my meniscus repaired. It was a 4 hour trip and not being "patient" I wanted to get the trip over. So I drove 4 hours straight, no stops and one week later did the same on the return trip. Won't make that mistake again! Again....thank you.

Ramona 6 months ago

That's good to hear... I am going for my 6 months check up Monday... I think once I see all of my scans and xrays come back clear...my anxiety may stop... Like all have said Thank you for posting this...

Steph  6 months ago

Thank you , Thank you ,Thank you!!!!

I had mine about 5 weeks ago now, one week in hospital and a very long way to go on warfarin... it seems my condition is genetic ( my paternal Grandmother had one and my Father has vein issues too)also I may have suffered a mini stroke about 11 yrs ago when I was about 22 so it looks like clotting is going to be an issue for me.

Thank you so much for taking the time to put this together as (as you said ) nobody is able to predict just how long it will be before you'r able to do everyday things without pains and shortness of breath.

Thanks, Steph.

cynthia 6 months ago

I am a 58 year old hyper medical worker. Had inner ear infection, then 4 wks of chonic cough, then developed shortness of breath, exhaustion past 4 wks Finally my boss said not to come back to work until I see a MD and get a real diagnosis. She saved my life. Went back to MD, they sent me to stat CT scan, went to ER, stayed 5 days and now I am post hosp 4 days. My mother died of this and I have been so emotional Chest pains occur and make me think I am having a heart attack. These comments have helped me realize this is a common side effect. I am not sure how long I need to be off work , my MD stated at least 2 wks. however I am worried, I am due to go to a seminar in 18 days, that worries me and also fly to Las

Vegas for wori in November I feel the need to say no at this point, just have a fear of leaving my area. Any thoughts? I have had to take Lovenox and Coumadin trying to get adjusted.

Thanks for this site, sometimes just to vent and share what is oon my mind is helpful

wayne 6 months ago

hello and many thanks for this wonderfull site, its been 9 weeks since i was diagnosed with a massive P.E. in my lung and like many others on here it has scared me to the point where i do not want to close my eyes at night for fear of not waking up the next morning. i have been constantly reasured by doctors and nurses that the worst is over and if the woest was going to happeen it would have happened by now but i just cant seem to believe it (as much as i want to!!!) i hope this gets easier because at the moment i am a nervous wreck!

dave 6 months ago

thanks to all for your answers and help. This information is for those who experience PE and live in AZ, TX, CA. I was diagnosed and receiving treatment for Valley Fever, a lung condition caused by a fungual infection common to the areas noted. When I complained about pains in my legs, my concerns were dismissed as common symptoms of VF. During doctor visits over six months, I also expressed concern about pains in my brestbone. Since muscle, joint, and bone aches are common symptoms of FV no remedies were advised. On one visit, I mentioned an extreme pain in my rib cage, but again it was not considered unusual for my condition so no action was taken. On my last visit before leaving for vacation, I explained that I had started to cough up blood spots. I ct scan that day found clots in both lungs and I was immediately admitted to the hospital. I share this information to make two points that I leearned. First, it is easy to dismiss symptoms when you are already being treated for an existing condition. Ask yourself if you did not have the first condition, what action would you take when these "new" symptoms showed up. Second, I trusted that my doctors knew more than I did about how I was feeling. When the pain or fatigue tells you that something is wrong, persist on making sure that your doctor considers your symptoms as completely separate from the existing condition and performs the appropriate tests. In my case, I had DVT's and the outcome could have been much worse than it turned out to be.

Thankful 2 b here2 6 months ago

I was so thankful to find this forum to read that others have had similar experiences and what to expect in recovery. I also suffered a PE three weeks ago. I am 43 and had no sugeries or injuries prior to this. I felt dizzy, nauseous, faint and experienced rapid heart beat and shortness of breath. This went on for about seven days, I thought I had some kind of virus. I went to my pcd she ran blood and urine tests as well as an EKG all were normal she sent me home. Two days later I felt worse like I was going to pass out I called my husband my mom and my pcd. She advised me to go to the ER again more tests a chest x-ray EKG blood and urine tests all were normal. 6 hours later they were going to send me home just as a precaution they ran a Ddimer and it was positive a CT scan showed I had a PE was admitted for three days with lovenox

Thankful 2 b here 2 6 months ago

And coumadin. I had severe anxiety and had body shakes and racing heart beat. Then they thought my pancreas was enlarged so I got more scared I have three children and a husband to take care of I prayed to live to see them all. When I was released I still had the shakes dizzy spells and an anxiety. Three weeks later I am still tired but feeling better. This seems to be a slow process and my INR rates fluctuate but I guess that is normal. They do not know why the PE happened. I guess they can run more tests once I am off the coumadin. I am praying for all of you and when my kids come to me for a story or kiss I hug them a little longer and thank God I am here. I don't sweat the little things. We are leaving to go to Michigan in one week I must admit I am a little anxious but we plan to take frequent stops and I hope all goes well :) I am taking one day at a time and hoping to regain the strength to be normal at some point. Thanks again for sharing!

lucky2bhere 6 months ago

I am so happy to find that I am only feeling what so many others are and so very thankful for this site. I was hospitalized 3 wks ago with multiple PE in both lungs after left leg swelled but nothing was found after 2 ultrasounds. Had chest pain and shortness of breath for over a week and one previous trip to E/R by ambulance thinking I was having a heart attack. They then only found that my potassium was low and decided to disregard the real reason I was there and pumped me full of potassium and sent me home. Lucky for me the second time around I had a young PA who actually listened and did a CT scan and found that I had the clots. I spent four days in hospital and did not feel as though I was well enough to leave when they said time to go home and every day is now hit or miss. I have terrible pain in my left lower rib front and back.Doctor says it is Chest wall syndrome. Had a repeat CT no additional clots, however the ones I have are not dissolving. See Dr. Blood again next week again and hopefully someone has suggestions. This has really drug me down. I have had many surgeries in the past and misc. issues and always bounced right back in a hurry. It isn't happening this time. My INR is finally at 2.5 and hoping it stays that way. Another check again tomorrow and I will attempt a half day at work for the first time since the PE. It does make me feel better to know that this drug down feeling seems to be expected. Just glad to still be around to whine about. Thank you all for the great info.

Rebecca Aus 6 months ago

Like everyone else, I'm so pleased I found this page. Am 36yo female diagnosed with multiple and large PE in both lungs 3 weeks ago.

I'm still experiencing some chest pain, shortness of breath and get tired more easily these days but the great thing is I'm alive and on the mend.

One thing I can't seem to find though is that is it common to bleed daily? I don't normally have regular periods and the blood isn't fresh (red). I've bled since I've been on Clexain injections and coumadin. I'm assuming it's the clots "breaking down" but can't be sure.

I'm going to see my GP anyway but wondered if this is normal in the recovery process of PE.

Many thanks...

wayne 6 months ago

er ok thanks

Rebecca Aus 6 months ago

Hi Again,

What I have really loved is that over a year on from your experience, you still take time to read and respond...that's incredibly generous of you. Thanks

I went to my GP who said it is very common for women who are on Warfarin for their menstrual bleeding to increase dramatically and/or the length of time increases.

HOwever, if it does go on longer than 3-4 weeks then it's best to get a referral from your GP to a Gynocologist to have it checked.

I previously had a Mirena coil insterted, then after having it removed (after 5 years) went on the pill for 5 months. A week before I had the PE, I had a new coil inserted. The Mirena is not associated with the PE, and process of elimination will come down to either genetics or that I was on the Oral Pill for that period of time.

I've learned many things over the course of the last few weeks, but it has also stressed how important it is to know your family medical history. Unfotunately both my parents have passed and I never knew much about their medical history. It was only through a relative that I found out that clotting is common in my family.

Many thanks again for your contribution and responses - it has been most helpful.

REgards

Rebecca

Duane 6 months ago

Thankful 2 b here 2,

please know that your not alone. i was a healthy 43 y/o male. i had multiple PE's. It took many doctors and ER visits for them to find them. Acutally found it by walking me 2 steps with a pulse/ox on my finger, O2 droped it like its hot (lol) I had no surgery or anything to indicate a problem, My muscle tone went so quickly.Its been 2 months now and I am getting stronger slowly, walking and light weightlifting. It seems like some days are better than others. It is very frustrating.

Everyone,

hang in there, and my prayers are with you all.

Duane

Hannah 6 months ago

Hi, I am 28 years old and 3.5 months pregnant. This response really helped calm my nerves a lot. I was so concerned as to why the deferred pain in my shoulder was still there. I have still kept my doctors informed but every case is different. My bilateral PE began one morning when I woke up and attempted to yawn and taking a deep breath felt like a stabbing under my ribs. It was 5am in the morning and I assumed I was pregnant and had a oddly placed pocket of gas trapped, so I let it be. At 8am however, I woke up and had severe shoulder and back pain. I was stiff like I'd heard a heart attack makes you feel. My mother in law is a nurse, but told me after 4 hours of pain that I should just go to the ER. I got there and they did a chest scan and thought it was pleurisy. They prescribed me with percoset which bothered me dice it's a narcotic and I was pregnant, however the pain was so intense I started with half a pill and had to eventually get my dose up to the full 2 pills. They also gave me a rx to go get a VQ scan but my pain was so severe on Monday, I asked to reschedule for Tuesday. My obgyn called me Tuesday afternoon and said "get to the ER, idk why I have this feeling but I really just want you in there tonight for a CT scan. If this is a clot it can kill you! I'm not trying to scare you. Just know the severity an I do not want to chance this. Im calling in the arrangements." I got to the Hospital and was fit in quickly, and 15 minutes later I was admitted to CCU with 2 clots and partial lung collapse in my left lung and one clot in my right. The girl who did my CT scan was 3 weeks farther along than myself and she said "you're lucky, I had a stroke 6 weeks ago bc of this bc I ignored the pain". It's amazing how something I never heard of could be something that changed my life. I now had have to do blood work once every 3 weeks at the hematologist and have to give myself subcutaneous shots of lovenox twice a day. But nothing is as scary as what the alternative could be, so I do it without complaint or qualm. I'm eager for the pain to go away, as trying to sleep when youre pregnant is difficult enough without shoulder pain, but other than that, I'm hoping to have no other issues with blood clots after the pregnancy!

Erica 5 months ago

My husband Michael had his knee scoped and was diagnosed with a massive DVT a week after the surgery. He was admitted to the hospital, put on a heparin drip and sent home on coumadin and lovenox injections the following morning. I can relate to what everyone says about being home. Mike was happy to be home, but I was a nervous wreck, and rightfully so! At 5 AM, less than 24 hours from the time we were sent home, I was calling 911. My husband was diagnosed with a PE in the right lung. A week later, he was diagnosed with a pulmonary embolism infarction. That was two weeks ago. I have been with my husband for nearly 20 years now, and at 37 years old, I can count on one hand the number of times he has been sick. Very stong, highly athletic, he has his own gym in our house! Now he gets winded walking across the room. He is very weak, always tired, and the pain is so bad, he cannot sleep without pain meds. What he wants more than anything is to FEEL BETTER! Your stories have provided much insight. Thank you :)

GraceAnne 5 months ago

Thank you so much for this information. I am deeply distraught right now. My mother is currently unconscious with assisted breathing. She was brought in by my uncle after she called him saying something was very wrong. By the time they got her to the hospital she started getting worse and the had to perform CPR to get her stable enough to find out what was going on. They found a blot clot (not sure how big) in her lung and proceeded to treat it (not sure with what.) They said that what they treated her with caused some bleeding in her brain, so they needed my uncle to sign papers allowing them to give her medication to reverse the prior medication. By this point I was really confused (still am sorta) as to what in the world was going on. So now they are just monitoring her and will perform a CT in the morning. I have no idea what questions to ask or how to think or what the heck to do. She is in a California hospital and I live in North Carolina as a single mother and seriously don't have to cash to fly out. My uncle is Filipino so he can only understand but so much and I've been talking to the nurse on the phone. They say for me to call back by noon tomorrow and they'll have the results of the CT. If only I was there.. this is so hard..

GraceAnne 5 months ago

None of that sounds very good at all.. Thank you for your honest and quick response. I'm about to call the nurse to get an update before her CT. I will be sure to research and ask about these things.

Erica 5 months ago

Just got back from the doctor. Mike no longer has any breath sounds coming from the lower lobe of the right lung. They say it is unlikely that this infaction in the result of the initial pulmonary embolism alone. He most likely suffered additional embolisms at some point, leading to this infarction. They are talking about doing a repeat scan to check the lungs and heart. His first scan was July 21st. Is it too soon to do another, or is this one of those situations where the benefit outweighs the risk? Also, I understand recovery is going to be long and difficult, but is my husband in the recovery stage or is he still very much in danger? So hard to get these kinds of answers from the doctors...

Erica 5 months ago

Thank you so much for your input! It is amazing that you continue to help so many people years after your ordeal. WHat an angel you are... So I looked into the questions you posed and I have some answers for you. Mike had his knee scoped on July 12th. The DVT was diagnosed a week later, on the 19th. He suffered a PE on the 21st. On the 22nd, around midnight and 4 AM, Mike woke from a sound sleep, unable to breathe. The pain was excruciating; even moreso than the initial PE. The doctors said it was possible that he suffered additional PEs at that time, but they could not do another scan because one had been done the day prior, and they were concerned about the stress the dye would put on the kidneys. Treatment, as they explained, would be the same regardless. (1 PE or 3) Here's where the difference comes in though... On the 31st of July, Mike was diagnosed with a PE infarction. This past Monday it was confirmed that the infarction was quite significant, and Mike no longer has any breath sounds coming from the lower lobe of the right lung. Looking back at the scans and testins, it is highly unlikely that this infarct was the result of the initial PE, as that clot was very small. So Mike most likely did indeed suffer additional PEs within the first 24 hours of the first. Am I right to say that that would fall under the category of original clots, or would you consider them new clots? He still has a massive DVT in the left leg. (From the bottom of the foot to the back of the knee.) His INR is 1.5, he has an appointment with the pulmonologist and hemotologist next week. They said they are going to do a breathing test. (Not sure which one...) The doctors say all of the above is the result of Mike's knee surgery. He is in constant pain, and just wants to get better! From what we were told, recovery is going to be a long and difficult process, and even when he gets better; BETTER will most likely not be what he once was. However, in the end - HE IS HERE, and from what we understand, he is quite fortunate that is indeed the case. Thanks again for your input, and thank you for providing an outlet where I can vent, ask questions and read other people's stories. It has been a tremendous help.

Derek 5 months ago

Hello everyone.. I wanted to say 1st of all Great website, tyvm Lwelch! I moved from Florida to Boulder Colorado about 6-7 months ago and had a DVT in my left calf it was never fully dissolved (so to speak) so it ended up going into both of my lungs and I now have a bilateral PE and im only 21 years old. Ive been taking blood thinner shots (here it's called Fragmin) for 2 days so far and i still have 5 to go as well as im taking Coumadin for the next 6 months.. It's been a major wake up call for me and im still really nervous.. My question is and maybe you can put my mind at ease is... Is there a risk of dying of the PE now that ive been on Coumadin and Fragmin? I am just nervous that my blood clot will move to my heart causing a heart attack or to my brain causing a stroke.. If there is no chance of that at this point i would really love to know TY again for the input and the website.. Goodbye everyone.

Derek

Dom 5 months ago

Erica. I had a pulmonary infarction. Maybe my experience will help a little. I had been in hospital about 24 hours and was being treated with a clot busting drug when I deteriorated. My lungs started filling with water. I was given diuretics (make you urinate) and sent for a second scan (the first one 24 h earlier had diagnoses massive biltaral PEs). I was then visited by a cardiothorassic surgeon who told me that there had been pulmonary infarction and that this meant some of my lungs had died (infarction means "tissue death"), but he was more worried about my heart which would be under pressure if it didn't get oxygenated blood. Because I had just had a clotbuster he didn't want to operate (do an embolectomy) but he was thinking about it (ie: he considered that I had at least a 15% chance of dying). Afterwards my doctor told me that the ICU nurses were very worried about me at this stage.

Anyway, shortly after I went to sleep (on maximum oxygen) and woke up in the morning feeling much better. My recovery had started. The clotbuster had worked and oxygenated blood had reached my heart. Throughout all of this the nurses and doctors had reacted very coolly, and at no time did I really ever feel that I was in danger. It's only with hindsight that I understand what was happening. This was very good nursing as there would be nothing worse than having a panic attack thinking you are going to die when you are on maximum oxygen and your heart is not getting oxygenated blood.

I think if the crisis is now over and your husband can breathe then there is not that much to worry about. Since my "crisis" doctors continually play down the pulmonary infarction and its effect now. Not because it isn't serious, but because there's nothing they can do about it. They refuse to test my lungs saying that it's pointless. They are not clear whether the lungs will recover but they are clear that most people have far more lungs than they need. Sometimes when its a particularly humid or airless day I feel breathless, but you know maybe I always felt like that. I exercise now far more than before. Generally with PE once they get you through the worst you get better. It's just a long and uphill struggle and as people on here explain it's an emotional rollercoaster. I'm at 6 months now and I'm still not 100%. But I am at 90% so I just have to be more patient. I'm lucky my partner is very understanding and supportive. It seems your husband is lucky too.

Mike 5 months ago

Hello everyone and thank you for sharing your stories, as well as responding to mine. My wife Erica has been writing for the past couple of days. I'm 37 years old. I've never really been sick or hurt prior to this. I had my knee scoped last month. The surgery resulted in a massive DVT in my left leg. They say it is a complete blockage. DVT caused numerous PEs. PEs caused infarction. I went for a repeat scan last night. That scan revealed a patially collapsed lung and lots of fluid. I am extremely tired and weak. I cannot get comfortable. I cannot sleep. It hurts when I breathe. I cough a lot. I'm currently running a low-grade fever. What's next? I have no idea what to expect anymore and it's very overwhelming.

Ian 5 months ago

really glad I stumbled across this site, I had a massive PE around 4 weeks ago, and 11 days before that I had just been discharged from a 7 day stay in hospital due to rather severe case of pneumonia!...I am only 33 years old, and really didnt expect these problems at my age...I was a smoker, and am overweight...but otherwise I was active and healthy, I have been off work now for almost 2 months and am getting really fed up!...since the PE my recovery seems to be very slow! it was a severe case, and the doctor was amazed I was alive as I had so many clots on my lungs...I have had a really painful leg since before the PE, and it has gradually got worse...even after being on the warfarin, and over the last 10 days-2 weeks it had been swelling, and getting very painful! I had a weeks course of diclofenac in suppositry form and that really did help with the pain, I stopped these and the swelling persisted...so the doctor put me on water tablets, these really did very little apart from make me feel dehydrated...the swelling is subsiding a little on its own and the pain is not too bad at all as long as I don`t walk for too long or too far on it, the thing getting me down more than anything is the fatigue! I cant even walk my dogs, when I do any reasonable amount of excersize, I feel awful! I sweat like crazy...my heart feels like its going to explode! I struggle to catch my breath...it really is SO frustrating! I am due to go back to work in 2 weeks, and for the life of me I really cannot see how I will be ready, as much as I would love to get back to normality, I just know I will not be ready for work in 2 weeks!...I thank god I am alive, and am a very lucky man...but its hard to not feel down at the moment, but reading about others going through the same problems really helps me feel less "alone" my partner tries to understand, but she really doesn`t grasp just how much this has affected my health...so its great to read about people who know exactly what I am going through...I hope everyone makes as fast and full a recoveries as possible!

Jay 5 months ago

I just wanted to thank you for your article. I am 38 years old and was just released from the hospital with acute DVT and PE. I spent 5 days at the hospital and now am home with injections and warfin. I am on an emotional rollercoaster it seems like. One minute I'm okay and the next I am in tears. It is very frustrating not to be able to do simple things like taking a shower without feeling like you have run a marathon. Your article give so much information. Thanks again

Erica 5 months ago

Ian and Jay - Hang in there! You sound just like my husband... Mike is 37, he has always been athletic and very much in shape. After suffering a massive DVT, numerous PEs, a PE infarction and a collapsed lung, everything is a tremendous task! He has often commented on all it takes just to shower. If someone calls on the phone, he gets one or two sentences out before he is completely winded. We went for a walk around the block tonight and he was exhausted! What helps me/us is to read the stories from others on this site; others who are months and years ahead in recovery. I pray that Mike will continue to heal and make it to that other side, to where he can say, "Yeah, I remember going through that..." rather than, "That's exactly what is happening to me!!!" In fact, that is my prayer for everyone on this site.

Here's a question to all of the DVT sufferers out there, both past and present: Can someone please explain to me how you go on with life, not worrying about the massive clot still present? Mike is a month into his recovery, his INR is FINALLY theraputic, and the doctors seem optimistic. However I am still a nervous wreck! The DVT caused all the PEs, the infarction and the collapsed lung in the first place! How do you go on living with that clot still there?!? How are you not constantly worrying that a piece with dislodge again? I'm sorry if this comes across as negative... I certainly don't mean to be... It's just that the fear associated with all of this is unreal. Jay was right when he said this is an emotional roller coaster; for those who suffer, as well as those who love them!!!

Ian 5 months ago

Thanks Erica, sounds like your husband has really gone through it! and hope he feels better very soon!...regarding the clots, from all the information I have gathered and been told by my doctors...it seems the clots dissolve naturally over time, even the main ones that cause the DVT, and the warfarin should stop any dislodging of any clots still present, I am very paranoid already about it all happening again when I am off the warfarin (if I come off it of course)...

Steve 5 months ago

In April 2011 I was admitted (by ambulance) to my local hospital. I was diagnosed with multiple bilateral pulmonary emboli and was kept in for 11 days. It is now August 2011 and I am starting to feel much better, although I have a number of tests still to go. I have undertaken a serious amount of research to understand my condition and your article was particularly informative, in particular how you felt some months afterwards, i.e. good days/bad days, chest pain, fatigue and not to be underestimated, anxiety. It was very reassuring to see that my suspected hypochondria post event was not imagined – that has been very reassuring. Many thanks for a superb article.

Jay 5 months ago

Erica, I feel for you and your husband. I understand about your fear of how do you not worry. I battle that fear every day and I am only at 1 week and 1 day. I spoke to the doctor yesterday and he said that most clots will dissolve but some remain and the blood is rerouted around them. When he said that all my fears came rushing to the surface again. He is referring me to a hemotologist now; I am hoping this doctor can put some of my fears to rest.

I sprained my ankle two weeks before I was diagnosed. It just seemed the ankle was not getting any better. Swelling started in my ankle and went up my leg. The pain was excruciating. I thought I had been misdiagnosed and had broken my foot. Five minutes at a foot specialist had me on my way to the hospital for an ultrasound of my leg. From there multiple DVTs were found and that night the PE was discovered in my lung.

I thank everyone for their support and information. This site has been a huge help

Thankful2 be here2 5 months ago

Has anyone experienced heart flutters. I have had them almost daily since one week prior to my PE diagnosis. I am going to get a referral tomorrow from my GP to see a Cardiologist. They do not hurt but feels like flutters or a skipped heart beat. It has been one month since being in the hospital. I get tired so easily from my normal daily tasks and am wondering when my energy will return. My INR's have been within range so now I am getting checked once a week.

Also any feedback would be great!

Ian 5 months ago

well....I am off to the docs tomorrow, my leg is at record swelling today! my ankle looks deformed!...there is no pain..but I need to find out what is causing this severe swelling! I am disappointed with my doctor really, as I feel he should have sent me for a scan of my leg last week when he gave me the water tablets, regarding the heart flutters...I had them on and off after the PE...and when the PE happened, it felt like my heart was going to explode! I really did think I was as good as dead, I am not getting them now really, and thats a month on, my main problems are the swollen leg/ankle, and the fatigue...

Dom 5 months ago

Ian

I would ask your doctor about the water tablets because I understand that diuretics can increase the chance of clotting. I may be wrong, but it's worth checking.

The funny thing about being tired is how inconsistent it is. Sometimes I can do 30 minutes of workout but later on talking becomes exhausting. It is worrying when talking tires you out. But it's good days and bad days with the bad days getting fewer and fewer as time goes on. I'm at six months now. I am doing lots of exercise. I'm not 100% but I'm getting there. My ankle is still swollen and the cardiologist blames it on the broken ankle and the orthopedic guy blames it on the DVT. I just move it and exercise it as much as I can.

You know it is perfectly OK to be paranoid about your health. Most of us overlooked the signs of our PEs and so we have learned a lesson that we need to listen to our bodies. We have to constantly fight the doctors who don't appreciate this and get irritated by our questions and need to understand.

lucky2bhere 5 months ago

I received wonderful news yesterday!! My most recent lung CT came back clean. However I seem to be getting short winded more this past week than I did any other time since released from hospital. I also have pain across the back of my lungs that never completely goes away. Has anyone else had this happen after the clots have dissolved? I am beginning to think that I will never be well and pain free again. I have told my PCP however she does not seemed overly concerned.

Erica 5 months ago

lucky2bhere - Does it hurt when you lay down? Are you coughing or running a lowgrade fever? Mike was feeling that way prior to the infarction. I'd talk to your doctor about it.

Our list unfortunately continues to grow! Mike had the DVT, the PEs, the infarction, the partially collapsed lung, and now? He now has something called a pleural effusion. They told us he had fluid around the lung when we were back in the hospital the end of last month. Problem is, rather than the fluid decreasing in volume, it seems to be increasing! Other problem is it may be blood. More testing... More waiting... Possibly surgery to drain the fluid... Will this ever resolve? Any of it? When will my husband get better?

lucky2bhere 5 months ago

Erica - It does hurt also when I am laying down but seems to hurt worse while sitting. I do not have a fever. What I find strange is my CT scan of my lungs on Tuesday came back clear. I do think if I had fluid it would have shown. I have made my doctor aware and she did not seem concerned. So I wonder if this is part of the recovery process or is there something actually going on?

Erica 5 months ago

lucky2bhere - Mike has both fluid (pleural effusion)and an infarction. The infarction was diagnosed via chest xray. The CT scan showed the fluid and the collapsed lung. He's also having a special ultrasound on Monday. If you're not running a fever, that's a good sign. Our doc had us checking, as low grade fever was an indication of the infarction and collapse. If you're happy with your doctor and your doctor is not concerned, I'd say go with that. If you're not so sure, there are plenty of doctors out there. Here's hoping it's all a part of the recovery process. Good luck!

Ryan 5 months ago

My wife who is 27 was released from the hospital 2 days ago with multiple PEs. She spent 8 days in the hospital and they finally got her INR to a therapeutic level. The biggest battle we are facing right now is anxiety. Are there any of you that live in Las Vegas? I would love it if we can share stories and I'm sure talking to someone in her shoes would help tremedously as I cannot fully understand what she is goin through. We see the hematologist for the first time since leaving the hospital and I'm hoping we get some answers we are looking for. It looks like it's a long bumpy road to recovery. I really appreciate this website and I hope you guys continue to post your struggles and successes as it seems to be what a lot of you go through. I will show my wife this site later today when I get home and I hope in reading your stories she will find some comfort. The hospital stay was tough but being home has been even harder for her...we have 2 little kids and all she can think about is not being around for them as they grow up. Thanks again for this wonderful website.

Kent 5 months ago

Ryan and all

I revisted this site for no other reason than validation and assurances.

It has been 27 months since diagnosis. The stories/the issues faced are similar to my experiences.

As with everything in life it is all about attitude.

Before PE I was an accomplished marathoner/triathlete/endurance adventure racer. [My PEs were the result of a tib/fib fracture that occurred because of a skiing injury, an injury that in itself had major complications]

As noted in a prior posting I have and will continue to ignore/deny negative comments, determined to return back to my former self.

While the road has been difficult, I am doing it via belief in self and higher power. You will be amazed at what the body can do as I beleive the brain is your biggest muscle.

Last night I ran about 12 miles around a 7:50 pace and I am planning to work out again tonight with a group of former Navy SEALs.

As I am sitting here today, I am feeling pain in my back and nominal chest pain, a condition that may be chronic, the effect of scarring. My doctors have said if pain increases via excercising call 911 immediately.

To date this pain/discomfort has dissipated via excercising.

My shortness of breadth which at times still occurs at rest also disappears via exercising albeit the first 5-7 minutes of any run/workout is difficult as I am battling to get the proverbial "second wind."

Yes there are times I am concerned, for example now as I wonder in a few minutes of quietness following an incredibly hectic day, but I ask is this not expected given the events of the last 27 months.

We have all survived a life threatening injury. Look at our recovery however as overcoming a challenge, an accomplishment that few have had the opportunity to achieve.

Some may view this as dysfunctional thinking but it works for me.

The events surrounding my PEs have made me more thankful for everyday, recognizing so many things I previously ignored because of life's busyiness.

Keep the faith! This to shall pass with yet another great battle to face and overcome. Life is not a spectator sport. It is meant to be lived to the fullest, defined as experiencing and learning from both its highs and lows.

Kent

Andrew 5 months ago

Thanks for your website.

FWIW in 2006-7 I started seeing my doctor with shortness of breath; I went from run 10km to not able to climb a flight of stairs in a couple of days and slowly back. I was put on steroids for asthma. One morning I blacked out at breakfast with the younger kids and my wife took me in to ER. I live in the UK and the NHS ER is superb; within a hour I had had Xray, blood tests, blood oxygen and a CT scan which showed clots on both main pulmonary arteries as well as in the lungs. I arrested on the trolley returning from the CT scanner and got resuscitated, clot busted, ultrasounded showing clots still breaking up on my knees and had a IVC filter fitted. The specialiest said outlook was "uncertain" since the "event" I had was "not survivable" so no data was available. Anyway I am kind of ok now but unsure if there is enough permanent damage to cause a problem. I am on 11mg of Coumadin (Warfarin) daily for life.

DiNMontana 5 months ago

Hey Erica!! I had very similar symptoms to your husband and it does get better.

I had severe pain and couldn't breathe when I laid down, it wasn't much better when I sat up. (I actually don't know how I got through those first few days without going to the ER). I coughed up blood but thought I pulled a muscle or something and thought I could "walk it off"... I was sooo short of breath as well. But then the next week went to my primary care physician. I was dx'd with PEs and infarcts/pleural effusion. I guess when the lungs are inflamed from the infarcts and they're rubbing on the ribs, etc... it causes intense pain... So when you have the infarcts which cause the parts of the lung to die and collapse and then fluid to build, well... its just a big mess. So you can analyze it but nonetheless, PE's are just dangerous, whatever the outcome, or the course of how the PE occurred. My lesson was, don't wait to see your primary care physician. Its an ER visit and don't suffer in silence. My fiance is a ER physician. I didn't say anything to him. But then it hurt so bad, I couldn't make any noise either.

I had blood and fluid in my lungs... over the next few months I had a couple bouts of low grade fever and more fluid in my right lung along with more pressure and chest pain (I though it was another PE) but it was pneumonia... I think all in all over 4 months I was treated for pneumonia 3 times. So don't expect a miraculous recovery.

Keep processing on this web site. It was a god send to me. I was full of anxiety. But I'm 9 months out now. I can still feel my lungs at times. It seems more related to elevation and/or wild fires. Its bow hunting season in Montana and if I'm hiking through the mountains I can feel it... OR if someone scares me with a spider (that could just be good old panic). It seems like I often have a "stitch" in the lower right side of my lung but its acceptable. Lungs are resilient. That's the good news. Keep hanging in there, it'll get better. The anxiety will decrease and he'll start feeling better.

Deanna 4 months ago

I was admitted to the hosp 1 month ago for PEs. As I sit here typing I again have tightness in my throat and chest. It is the night hours that scare me. Will I wake up the next morning? Will I ever feel like myself again? My 1st ER visit was an ultrasound on my leg. They found nothing, told me it was muscle strain and sent me back to my primary. Primary said it might be rheumatic, took blood and said it was OK to go on vacation. Took a 7 hour tip to the beach and was sick right from the get go. Had nausea, low grade fever, weakness, a cough and back pain. No chest pain and no shortness of breath. After laying in bed for 2 days and almost passing out, had hubby drive me to the ER. D-diner came back bad but chest xray was fine. They did CT and found two emboli...large one in right lung and avg size in left. After a 5 day stay I was stable enough to be released and go home. Very nerve wracking drive back home. Next day another ER visit because my chest now hurt. No new clots, just more pain. This condition is very scary...while it seems a lot of us have similarities, we are all different. I have two small kids that I want to be there for, but at night when I get more pain or tightness, I wonder whether I will be here. Thank you for this log because I probably be even more scared. My last INR came back too low, so they are upping meds. I must admit I miss my birth control, but don't want to risk it because they have no idea why I clotted. All tests they did before putting me on coumarin were negative. See pulmonologist on Monday and a hematologist in Oct. Drs have said they are not sure of next steps besides the thinners as my heart - EKG was always normal - and my breathing was never compromised. Compared to others I read here I was lucky in that respect. I would get short of breath or breathe hard when I would run upstairs but otherwise fine. Has anyone else had this? My lungs were always clear to listen to until they started the coumarin, then it would be a crunchy sound which I could feel when I breathed. I still get a strange sensation every now and then that is kind of like a wet rag in my lung that I'm trying to breathe thru. Again thank for these stories. They definitely reassure me and help me deal with the ups and downs.

Erica & Mike 4 months ago

Thank you DiNMontana! Your post has helped us tremendously. This past week was a tough one... Partly because it was so darn humid, but also because we're going on three months now, and Mike just wants to get better. He has a "new" pain now. It's still in the same location, chest, back and side, but it's more of a pinching. It never subsides... just seems to intensify in waves. The doc sent him for more testing. The chest xray and bloodwork both indicate more fluid and the lung is swollen. The one doc wanted to send him for another CT Scan, but he just had one three weeks ago, and this would be his 4th in the past couple of months. The pulmonologist told us to stay away from additional scans during our last visit. Mike is due for additional bloodwork tomorrow. He has appointments with the pulmonologist and the hematologist again in another week or so. Needless to say, we are both concerned that the fluid has not resolved, and we're also concerned that he is still in constant pain going on month three. However, after reading all of the posts, I'm beginning to wonder if it's just all par for the PE course, and we need to give it more time.

Becca Hutcheson 4 months ago

Thank you so much for this. I can't tell you how validating it is. I'm looking forward to reading every single comment.

I am coming up on 10 months now since my moderate PE. I was having horrid stabbing pain in my left side and I just kept telling myself I'd pulled a muscle while exercising and it'd go away - until I couldn't walk anymore bcs of the pain. I called my MD who had me come in for an x-ray of my ribs - but no one - including my 3 friends who are docs - thought about a PE as an option. I am lucky that the ER doc decided to look at it bcs as she and everyone else said, I didn't really have the traditional risks for one.

I waited about 4 days to go to the ER - and by then the inflammation was pretty bad, so my recovery took much longer. I was in the hospital overnight and released me on injections until my INR got up on coumadin. I took coumadin for about 6 months and stopped about 4 mos ago. It's weird - when I started on coumadin I was freaked constantly about my greens and my blood getting too thin, etc. but then I got used to it - and I guess it gave me some sense of security - to think that I most likely wouldn't have another while on it. I've had the MOST anxiety of this whole process since I've stopped coumadin. I don't trust my body again, I guess - and it feels like I'm sort of out in the world full of potential danges w/o any sort of safety net. What if it happens again and it's bigger next time? It is on my mind almost constantly.

Initially my main problem was the pain. They gave me Toradol in the ER and it was the best thing I took for it - totally wiped out the pain - I was so relieved. But given it's a NSAID I couldn't take it while on coumadin and the other pain pill options didn't really help much. I went to the ER again a week later due to pain and they did another scan to see if I'd had another clot, but it was just increased pleurisy as my lung tried to heal. I was out of work for about a month with pain from the pleurisy - the only position I could be in w/o pain was standing or sitting very upright - and while for the most part it resolved after a month, it took 3 months until I could lie down again to sleep w/o having pain. What bums me out, maybe bcs I just kept holding out hope while in the midst of the initial pain that at some point it'd be completely gone - I still have pain occasionally. Nothing like before and there are stretches w/o any sensation or pain at all. But I get freaked out occasionally (like now) because I get similar sensations - like little jabs ("zingers") or my chest feels like someone is digging a heel into it. But that only seems to happen after I do something that irritates my chest - like it happened after I moved boxes and again after exercising. And somehow along the way I developed Asthma - which I have to think is related to the PE but who knows. But each time I get those sensations I really get scared that I've had another PE. And it's just really frustrating to feel like I'm back to normal and then when I try to do things I used to do - like exercise hard - it brings back the chest pain and I can't sleep lying down again, etc. I was crying the other night because I fear I'll never stop having this happen out of the blue. It's just hard to believe (although super validating to read others' experiences here) that it'd still be healing after 10 months.

I guess aside from the occasional pain and trying to figure out what of that is this newly developed asthma and what is from exercise and what is something I shoudl be concerned about - what I struggle with most is I/my doc's don't know for sure why I had a PE so I am pretty constantly freaked out that it might happen again. And is there something else wrong that they didn't find in the work-up? Like cancer? I guess my health and life itself feels really fragile now - and I was always so healthy until this happened.

It really helps to hear that others have had symptoms 10 months out or even longer. It helps to know that others developed ashtma or asthma-like symptoms. It helps to know that others really struggle with anxiety similar to mine. I am so glad to have found this group.

Becca

Tj 4 months ago

My PE was on January 10th 2011. I feel pretty normal and have regained strength and the confidence to bike, hike, kayak etc. My doctor will not release me from warafin even though there was no known reason for the clot. I think I would get paranoid if I stopped taking it. The lung pain that originally brought this to light still pops back. I have to just ignore it. Tylonal and tramadol seem to work. The scariest thing is that they found very small noduals in my lungs that they now are following. I guess though, that if they become something it was a good thing to find them now.

Lucky2 be here2 4 months ago

It has been eight weeks now since my PE I am finally feeling better. I was getting really bad headaches but started having caffeine again and I think it is helping. They still do not know what caused the PE yet but when I am off of the Warafin they will run more tests. I will be on it until the end of January. I still get tired easily and have to pace myself with daily activites which is hard when you have three very active kids but I am thankful to be able to do normal tasks again. I am scared to go off the Warafin(coumadin) and hope I do not get another PE. I have never been so scared as I was and I still worry about my health alot. I am so glad to have found this site and wish everyone a good recovery. I am hoping to get some more answers in a few months. I am praying for all of you.

Kevin Whitlam 4 months ago

On September 22, 2011, i had suffered extreme pain on the left side of my body from my neck to my pelvis. It was a sudden pain that started out feeling like arthritis, and quickly moved through my body with a higher pain level in a very short time of three hours. The pain was overwhelming, could not lay down, stand, or sit, unless I was in a hunchback posistion. I had to breathe in a way the was like hyperventelating. Current doctors were prepping that I was possibly passing a kidney stone, or suffereing from a severe Pnemonia illness, in no way were they searching or even looking for a blood clot in any way, as my symptoms to their knowledge was not displaying that I was having a blood clot. It was not until the next day through the second round of CT scans and X-rays that they discovered the blood clots in my left lung, and diagnosed me with a Bilateral Pulmonary Embolism. A stay in the hospital of four days. I would have been dead in 48 hours, if I did not go to the doctors, as stubborn as I am. Through all of this afterward, I have to try and maintain an INR blood level between 2.0 - 3.0 through Warfarin I still have minor pain when sneezing, coughing, burping, hicups in my lung region, I am hoping this will heal over time. Bleeding gums are also encountered, but for a short time. I do not want to give up, too early in life to let something beat me. Oh and I am 35 years old.

MIke & Erica 4 months ago

Well, we are about 3 months into recovery of the DVT, PEs, pulmonary infarction, pulmonary effusion, and collapsed lung. Mike's recent diagnosis is Post Phlebitic Syndrome. Anyone have any experience with it?

Rosanne 4 months ago

After being on warferin for 19 months my INR has been off. Med. has been adjusted but it's still low. I have not been eating greens. The only thing I know for sure is that I have started getting my period again after not having it for over a year. Does anyone know if Warferin can suddenly stop working?

Rosanne 4 months ago

My warferin has been increased again. I will have my blood drawn in about a month to see what my INR is. I do have a vena cava filter so I feel I have some safety. I really don't think my doctors are knowledgable about PEs.

Joann69 3 months ago

Rosanne if your warferin has been increased again is because your INR results are below the level. Mine for example has to be between 2.0 and 3.0 every week when i go to the anticoagulation clinic my INR somethimes its below the level or above, so thats when they make a choice of the dose i need to take. I think they should of see you every 2 weeks and not a moth later.

TheOldDad 3 months ago

My fun started when I woke up 9/26 with a backache. Figured I must have slept on it funny, sat in hot tub for an hour in evening. Woke up in the night with more pain but still thought I somehow pulled a muscle or perhaps cracked a rib. Got worse, called doc, told me to get a chest x-ray that was diagnosed as bad pneumonia. Mentioned to my wife "Well at least it's not a blood clot." Sat in hot tub again for another hour, didn't help, tried to sleep sitting up. Next day I saw doctor, no fever, no gurgling chest, no hacking, odd but doc said

could be early or viral. By evening all I could do is sit in glider chair and take tiny breaths. Our oldest took care of her siblings and my wife took me to ER where I managed tell doctor about Leiden Factor V (took 8mg of morphine to get the words out). CT scan showed extensive bilateral PEs. Five days in hospital to get levels right.

Here is where the story changes from most of the comments here. I had an inkling that it could be a PE by Weds. I know I have LF5 and my father had a PE requiring hospitalization about my age 30 yrs ago. He's now 82 in good health, although he's had two DVT leg clots with edema, so when the ER doctor said the CT scan showed PEs, I knew that I'd be fine. Even if I had somehow gone downhill, I was already in the ER so I was not afraid. I

vaguely remembered the drill from my father's PE - take warfarin for the next 50 years or until I expire, no big deal. I went back to work the day after I got out. Last weekend I split seven large logs into firewood with an 8 lb maul.

I got copies of the CT scans which are rather fascinating from an engineering perspective. I encourage you all to do the same. The reports are written in medical-ese but the actual movies are interesting - a slice by slice look of your insides.

Looking back over the years, I think that I've had PEs on several occasions - shortness of breath, elephant sitting on chest, chest pain. These passed in a few hours and I let it go. You cannot run off to the doctor for every little pain - you'll spend your life in the waiting room and I think that there are sicker people in the world who really need the doctor's time.

I feel badly for the young ladies (I'm 51 y/o) on this board who worry about being mothers someday. Don't worry, you can still make lovely babies, it will just take more caution. My niece has LF5 plus MHFTR(something like that) and has two wonderful little girls. She did have several miscarriages so you need to be prepared for that heartache and gave herself Lovenox shots every day during her second successful pregnancy. Find yourself a patient, understanding spouse and it will work out.

DebLHC 3 months ago

Thank you so much for your posting. I had my PE 6 weeks ago and the recovery has been weird to say the least. I have never been one for doctors or hospitals and probably would have blown this off too if it wasn't for the fact that my boyfriend and I lost our roommate 5 weeks before my hospital stay to a PE.

During my hospital stay and the couple days immediately following I felt at ease with what had happened and was comfortable with being medicated and moving on with my life. Over the past couple weeks though chest pains, shortness of breath, shoulder, neck and head pains have thrown me into anxiety. I know I'm medicated (coumadin) and the possibility of more pe's is very small but when I wake up not being able to breath or doing small chores around the house fatigues me, I do get scared. I see my primary in two days and if it wasn't for these comments and knowing that my pain and ill feeling is not just in my head, I would have probably spent another night in the ER. Nice to know that I'm not alone in how I feel. thanks again for all the personal sharing and best wishes and healthy recovery for everyone. :)

LA Hyde 3 months ago

I've had three DVTs and 2 pulmonary embolisms. Being asthmatic, I tend to attribute my shortness of breath to that. Not anymore. 8 months ago I ended up in the hospital with clots throughout my leg and massive clots in both lungs. I spent 5 days in the hospital, had an inferior vena cava filter put in to avoid any future clots from going to my lungs from my legs, and am now on warfarin for life. I'm the luckiest woman alive.

My hematologist suspected that I had an inherited protein C deficiency, but unfortunately a blood clot and/or blood thinners will affect the results. Having my daughter tested confirmed my diagnosis. It was extremely difficult to listen to the pediatric hematologist telling my 9 year old that she can never go on birth control pills, can never smoke, and when she gets pregnant she'll have to inject herself daily with a blood thinner like her Mom did when she was pregnant with her. She's nine! These are things that she shouldn't have to worry about. But at least she knows. I won't let her blow off those achy charley horse feelings in her legs, or any shortness of breath. I was lucky... she'll be informed.

If you've had a DVT or PE, insist that you get tested for a blood disorder. Don't wait until it's too late.

TheOldDad 3 months ago

I don't know if I'll be on Coumadin for life. I get another blood test on Monday to see if 8mg/day keeps me around 2.0. I would rather not take it forever, perhaps replacing it with a baby aspirin or two a day. Aspirin is less expensive and perhaps has fewer potential side-effects although bulk Coumadin is rather cheap anyway. There are new anti-coagulants coming out that work on a different pathway and do not require blood testing.

I do notice that I cough quite a bit, perhaps this is a side-effect of the infarcation (I just love that word, makes me think of ardvark!) but it's nothing major. One doctor said that my lost lung capacity should grow back in 5-10 years assuming that I don't get any more big PE events.

Good luck to us all! The fact that we are reading this means that luck is on our side already.

Dean Bloomquist 3 months ago

Thanks to Lwelch. Your excellent description of what recovery might entail has been my main source of information and it has been very helpful.

So I'll add my story and hope that it will be helpful to someone.

I retired just before my 70th birthday and continued with my hiking/biking activities. In Jan, 2011, I felt a sharp pain in my right calf but dismissed it as a muscle strain. Big mistake. The pain would come and go, but never went away. Within a week or so, I began to feel out of breath, just walking around the house and I rationalized that my old heart that just couldn't do what it used to do. Then my right leg started to swell up. I had a checkup scheduled with my doctor, so I waited until April 14 to see my doctor. By then, my leg was hugely swollen and I could barely walk.

I thought I had it all figured out and went into the examination room and told him that I thought I was suffering heart failure. He examined me and said, "You have DVT/PE and you need to be in the hospital immediately.

They did a CT scan to verify the PE and told me that I had embolisms in both lungs. The next two days were the usual ECG/vital signs/blood work, etc with injected Heparin. In two days I was able to leave the hospital and self-injected Heparin until my Warfarin INR level stabilized.

So, six months later, I have improved immensely and was back to easy biking/hiking until a couple of weeks ago when I woke at night with headaches, hip pain, pain in my finger joints and an odd pain in my forearms that showed up only when my arm was in torsion.

Since then, my morning resting pulse rate has gone up from 58 to 80 and I get increasingly out of breath, just walking on the level.

So I was beginning to worry that my recovery was all over and I was on backslide to my earlier condition. Then I read the comment by Llwelch, "There are a lot of ups and downs. Symptoms of the embolism will come and go for a long time after the embolism is found and treatment is initiated. It is not uncommon for someone to go three months without any problems and then find themselves with pain or shortness of breath again."

Thank you for that, Lwelch. I thought I was on a direct road to full recovery and apparently that's not the case. I'll get in to see my doctor to make sure nothing else has happened, but I'll also allow at least a year for recovery before I begin to reconcile my self to a diminished self.

Thanks again, to all who contribute. It's a great help to know what others are experiencing.

Tom 3 months ago

Thank you all for answering the questions my doctors have blown off, even calling me "obsessive." My biggest concern quite naturally, is whether returning pain means a new clot in my lungs or the fission and spread of the original clots; and then my left-side chest pain may also may be due to concurrent damage to my heart bec. it has had to work harder

SJE 3 months ago

I am now 2 months post initial diagnosis: clots covering more than 50% of both lungs and two DVT in my left leg. I too thought I was superwoman - I didn't feel well, had problems walking, carrying, talking, was coughing - and still flew 4 times the prior week. The ER doc said I was lucky to still be around.

This site is wonderful - it confirms the validity of how I feel, my symptoms, weakness at times, fatigue. I am recovering at my sister's and can barely walk around the driveway (prior to this I worked out 2 hours daily). Luckily I am not up in the cold north - but I have the opposite issue - going into overheated buildings drains my strength. I am 100% better than I was two months ago, but I am not at more than 50% of normal.

My chest hurts at times, I cannot wear a bra because I feel it constricts my breath (has anyone else run into that issue?). And since I cannot take hormones, my hot flashes have returned...

I had wonderful doctors, have excellent care at the coumadin clinic. But I am still not allowed to workout, carry / push anything. I understand all the medical reasons why that is and try to walk as much as I can around the house. I try to not be depressed, or overwhelmed. It is hard. thank you so much for this site and to everyone who contributes. It is so helpful

Patty 3 months ago

I had arthroscopic knee surgery 1 1/2 weeks ago. 4 days later my Dr had me go to ER because I was having pains in both legs. When I did get there I was also having chest pain that I thought was from anxiety and almost didn't say anything about, but I did thank goodness. I had CAT scan which showed a PE in right lung. They did ultrasound of legs which showed no clots in upper legs and was inconclusive on lower legs. They kept me a day in hospital and sent me home on coumadin and lovenox shots. I was also told not to move around much at all. My INR was 2.3 today so was told I didn't need to do the shots anymore for now.

I still have chest pains and get short of breath if I move around much, although it is getting better slowly. My legs are still VERY sore though. Unfortunately I am not getting very much information or directions from my Dr. I actually had a minor "break-down" yesterday because I have been so anxious about what is happening, when I should call the Dr, if my legs still hurting so badly is normal and when I can start moving around some. My knee is not healing very well because the Dr said I cannot do any of the excercises to strengthen it.

Thanks for your articles, and reading everyone else's experiences and questions have helped!

lizemr 3 months ago

Thanks so much for being here. All these posts make me feel like I am not the island I thought I was. I have a question about fumes and such. Does being exposed to fumes of paints and varnishes increase chances of PE re-occurrence? There is massive construction around the building where I work and for the love of God no one can figure out why the odorous fumes of paints and varnishes and other stinky stuff dumps into my office. The smells are unbearable some days. I am going to go to the occupational health office tomorrow because now I am coughing. Not sure if it is a cold or irritation. I know it scares me. I am 8 months post PE and sort if fragile. Please advise if you can. Thanks so much.

Liz

Jackie 2 months ago

Thank you so much for this article. I have been trying to find out more information on PE since my Mother had one last week. Thank you for putting everything into perspective so I can understand what she is going through.

Jennifer 2 months ago

Thank you very much for this...I am recovering from a PE, found last week. I spent 4 days in the hospital and am now out, but I'm experiencing the extreme shortness of breath still, along with rapid heart beat. (The PE was a result of a cardiac ablation, which is rare, but the rapid heart beat after a heart procedure had me worried.) I plan on discussing it with my doctor when I next speak to him, but this information was very valuable!

Eva 2 months ago

Echoing all the others who have thanked you for writing this; there is woefully little information out there on recovery. I suffered my first episode five years ago, and my second one last week. I ran across this while trying to re-familiarize myself with what to expect.

Like you, I was left with reactive airways. And like you, I had trouble getting that diagnosed, or even getting anyone to take seriously my complaint that my lungs were *different* post PE.

I will definitely be heading over to the PE support forum you mentioned ... thank you!

Shelley 2 months ago

I had a massive saddle pulmonary embolism diagnosed on Oct 18, 2011. I was in critical care for a few days. I had no idea I had a clot or was clotting. Everything happened very fast and what made me dial 911 and go to the ER was severe shortness of breath that had been getting worse over 3-4 weeks preceding my call to 911 on Oct 18/11.

I was given a CT scan and was told I had the clot had fully occluded almost the entire vessel in my right lung. The clot had also shot many little clots into my right upper lung. After 8 days in hospital, given heparin and getting my INR up to 2.5, I went home on just warfarin. I cannot breathe on my own, so I was put on the Home Oxygen Program and I have to use oxygen on exertion. On Oct 30 I was back in ER. I had had a bad cough since my first diagnosis and it never went away. It was a constant, painful cough and doctors told me that it was due to how large the PE was and it was irritating my lung. In ER on Oct 30 the ER doctor ordered an x-ray and said I had pnuemonia. Was given 8 day course of Avelox (antiboitics) at home. The day after the course of antibiotics was over I was sent for a chest x-ray again and there was something "not right" so my family GP consulted with my pulmonologist who had me go back to ER at hospital and I was admitted. Another CT scan was done. It was determined by my pulmonologist and hemotologist that the smaller clots had infarcted and the dead tissue caused a lung infection - so pnuemonia or not, the antibotics had worked. I was sent home after 6 days in hospital (have been home for 2 days), still on home oxygen on exertion and taking dalteparin shots (hepearin) administerd by myself and taking 9 mg of warfarin. I will stop the dalteparin shots when the target of 2.5 my hemotologist wants me at is achieved. I am 47 year old female, former smoker who was in "fairly" good shape. We don't know why this happened. I have shown postive for 3 out of 4 blood tests for ALPS ( antiphospholipid syndrome) and have the 4th and final blood test in January (there is a waiting period). As well, my platelet count is quite high and being monitored by my hematologist and if it does not come down to a normal range over the next 8 weeks or so, I will be started on chemotherapy(probably hydroyurea sp?). This has been emotionally devasting. I keep flashing back to ER and critical care and have traum and axiety. Have used a bit of Ativan but mostly my doctors have said the anxiety is normal - PEs are dangerous, scary and life theatinging. I execpt to overcome this with time. I am told by my doctors that what is essential to healing is patience and unconditial time for healing. I will give myself that. I cry a lot. I get scared that I might die or probably would have had I not reached ER when I did. I beleive in a higher power and go there often to ask for comfort and release from the pain (emotional and physical) of all of this. I expect to eventually get better. I won't beleive otherwise. Good news is that I had 2 heart ultrasounds and there appears to be NO heart damage - am very, very grateful for that. No new clots are forming. The infacts in the lung most likely won't happen again. The lung infection has cleared and there is no more coughing, so I can sleep. My thoughts are to all of us here to get better and to heal. Thank you so much for this site. It really helped me a lot. Take care...

TheOldDad 2 months ago

The more my Coumadin dose goes up, the lower my PTT. At 7.5mg/day, PTT was 1.9, now at 9mg/day, it is 1.6. Same diet, same routine. Someday I'll get it right :-)

pgeier 2 months ago

This site is so helpful, thank you for posting it! I was diagnosed Oct. 13th 2011 with a PE in each lung, a partially collapsed lung, fluid around my lungs and severe anemia. I was in the hospital for 8 days, receiving Lovenox shots and starting Coumadin along with receiving two units of blood. The anemia is from another problem I have, but also adds to the shortness of breath. I was sent home with no information on what to expect and no restrictions. That all sounds well and good but...I am still short of breath and I have such pain in my lungs/back sometimes I am not sure if something is amiss. The shortness of breath I think is normal but wow, the pain in my chest is almost unbearable at times. Any insight on how to ease the pain?

pgeier 2 months ago

Will check it out, Thank you :)

him 2 months ago

my dad had to got the er and such due to pe about half a year ago. And 2 nights ago he accidently forgot to take his wharferin pill for the night.The following day he had a pain in the kidney area on his back. The next day the pain changed to his chest with more severity. Then after that it changed to his leg/knee. He can't and couldn't straighten his leg knee without the sharp pain. He could walk fine yesterday but last night and this morning he had/has trouble walking even with crutches. My aunt and brother took him to urgent care finally after my brother and I told him that he needs to at least go see a doctor about it. Is this connected to pe and him forgetting to take that night's dose? Is it common and is there a solution?

Hopefully one 2 months ago

Hi I am almost at the six month mark after a massive pe and my pulse rate is still high but only when I am up doing things, when resting its like 72/74 as apprised to low 90's when up and about is this normal? When does it return to normal? Thanks in advance.

Mark from uk 2 months ago

Hi, a message to you all from your friends in the uk. It appears we suffer the same problems.

I got a knee infection from a bite early September and i was in the hospital for 5 nights due to the size of the swelling and to receive IVF antibiotics, they then let me out even though i couldt walk and with no aftercare apart from keep the leg up and no walking.

Well October the 23rd i had really bad pains in my back and couldnt lay down etc, i went to the docs who said i had pulled a muscle which i told them was rubbish but they insisted and prescribed valium.

The following day in total agony i went to a and e (UK TERM). I was in for 3 days temp of 39 and on morphene for the pain and going downhill and luckily doctor number 4 said treat him for blood clots, give him fragmin injections in the stomach and get a CTI scan done and this showed i had a DVT in the leg that had fired multiple blood clots into both lungs and the docs telling me i was lucky to be alive.

I was in for a week and given Warphram with a target of 3.5 currently today 3.9. A question i am am trying to get answered is long and short hall flying and can i or carnt i, no one can give me answers. Well good luck to you all from across the water Mark

mondaymom 2 months ago

Its been about 4 weeks since I went to ER and was found to have PE and probable DVTs in both legs. They did some blood tests in hospital and found I am positive for Factor 5 Leiden so I will be on coumadin forever. I have been on coumadin 7.5 mg daily. My INR was 2.8 two weeks ago so the Dr. said I could go 2 wks before next test. I went in today and the level has dropped to 2.0. I haven't missed any doses, no change in diet so not sure what the drop from. Dr. said on Tues and Sat to up my dose to 10. and rest of days keep at 7.5 and come back in 2 weeks for test. I still get tired out really easily and short of breath. Dr. said I really shouldnt be feeling that way cuz it was just 1 clot in lung and was not a large one. Basically got the feeling from her that she thinks I am just making it up. She said that I am at therapeutic level so I wouldnt develop any more clots. I have been having a sharper type pain the last day or so on right side of chest and in the back/shoulder blade area which is where the clot was. This is a newer feeling of pain and it hurts more when taking deeper breath. I dont really want to let Dr. know cuz I feel like she will just be more dismissive of me. How do I know if it is something I should be concerned about? And if I am at "therapeutic level" does that really mean I wont get more clots? The Dr. sent me to physical therapy this week to 'build up my strength', but the therapist is actually working more on my knee that I had surgery on 4days before I went to ER with PE.

mondaymom 2 months ago

Thanks for responding. Lots of good info. The Dr. I'm seeing is a general practice dr. She told me that she will refer me to a hematologist in about 12 months. I guess I'm not sure who I should be seeing- hematologist, pulmonary, ? or is waiting to see a hematologist in 12 months realistic?

Steve 2 months ago

Thanks for the article. I found it very helpful. I was diagnosed with PE while stationed in Afghanistan. The altitude, the summer heat, the frequent flights caused a DVT in my thigh that broke off and went into both lungs. Thanks to the medical intervention provided by doctors on base, I made it home safe after spending three days in a field hospital. In retrospect, the pain that I felt in my leg never occurred to me that is was a DVT....thought it was a slight muscle pull. I had always had the understanding that a DVT caused a great deal of pain and swelling, but this was not the case for me. I encourage anyone with an unexpected and undetermined pain in one of the legs, to seek treatment for a possible DVT. It turns out that we have a family medical history called Anti-Thrombin III Deficiency. Although I am in good health and have never experienced clooting in the past, the altitude I was residing in triggered the DVT. I am still home and recovering and still trying to figure out what my personal limitations are.

Nancy 2 months ago

Your posting pulled me from fear to process-there are injuries from PE and they need to heal. My PE was three months ago and I just heard this this week form my cardiologist. My course was similar to so many posted here and, like many, my treatment team didn't say much about recovery post discharge (twice)so I was frustrated by fatigue, SOB, tachycardia, fluctuating blood pressure, muscular pain, fluctuating INRs, etc. What I'd like to add (may be in here somewhere--I didn't read every post) is that it is critical to check interactions of coumadin with your medications. In my frustration, I started researching my medications. I learned that both my antidepressants and my blood pressure medicines can interact profoundly with coumadin. I weaned off of both and immediately began to feel much better (work with your doc on this). I also quickly weaned from caffeine, alcohol and sugar and am finally, after a long, rough hall, starting to feel better.

Shelley Johnson 8 weeks ago

My Husband had bilateral pulmonary embolism 14 days ago and spent 3 days at hosp and is now on warfarin. His INR level was 6.4 today. Is this dangerous? Also they did not find any blood clots in his legs or defective gene. More testing is scheduled in 2 weeks. What other possible causes for the bpe could there be????

Hopefull one 8 weeks ago

Thanks for the advice I was just wondering how you dealt with coming off warfarin? I am due to come off in early jan and am already anxious about it. My (massive) clot was caused by a dislocated knee so there was a good reason for the clot to occur in the first place but it's still a huge concern for me, having said all that this is the situation I was praying to be in six months ago. Thanks again for your advice-it really does help :)

Hopefull one 8 weeks ago

Thanks for the advice I was just wondering how you dealt with coming off warfarin? I am due to come off in early jan and am already anxious about it. My (massive) clot was caused by a dislocated knee so there was a good reason for the clot to occur in the first place but it's still a huge concern for me, having said all that this is the situation I was praying to be in six months ago. Thanks again for your advice-it really does help :)

Brie 8 weeks ago

I would really appreciate some advise. I am 22 Year old female and I have recently been diagnosed with saddle PE. I had had heel pain for 6 months after going for a bike ride; which now seems to have instantly disappeared. I actually have been ill since the 16 October and was having extreme chest pains, it felt like someone had broken my ribs. I was mis- diagnosed at the time with having rib inflammation (costochondritis) i walked around in pain and feeling unwell for 3 weeks. My mother forced my to go back to the doctors 3 weeks later when i told her i had a small trace of blood in my phlem. That night i was admitted to A&E and hospitalized with a large saddle embolism. They were amazed that I had managed to walk around with it for so long. I had had no real symtoms, no swelling or anything, just this heel pain that had been there for over 6months. I was released from hospital on 14 november on warfarin, and stable INR of 2.5 whilst only a month has passed I wondered if people experience bad chest pain at this stage and if they notice improvements and worsening of symtoms and if they still experience traces of blood in phlem? My respiratory doctor has sent me for ore blood tests to also confirm that I have not got cancer, so this is now an extreme worry. Generally I am fit and well and do not smoke :o(

Lucky2 be here2 6 weeks ago

Well it has been 6 months now and I am due to go off Warafin and then get tested to see if I have any blood disorders that may have caused my PE back in July. I am feeling much better but still tire easily sometimes. I am nervous to go off since the Warafin has been my safety net as I like to call it. In two weeks I get tested. Any prayers would be greatly appreciated :) I am hoping to not have to be a lifer (on meds for life). It is still a mystery as to how I got the PE. I am also scared to travel once I am off the Warafin. I am thankful to be feeling better and hopeful for the future. I will continue to follow this hub and find it very helpful in my road to recovery. Thanks for creating this for us all:)

Tj 6 weeks ago

An update. If anyone remembers I had an acute left saddle pulmonary emboli in January and survived with apparently no organ damage, however. They detected a couple very small nodules. one of them has grown to 12 ml witch allowed them to do a pet scan to see if cancer would light up (Talk about Stress). Well it lit up but was inconclusive so a lung biopsy was ordered. They punctured my lung witch is pretty hard to avoid. Good news is that it was negative for cancer. But, now I have to see a pulmonary doc. to determine what it is. It appears to be blood with iron deposits. There is a condition, something with an H that they are looking at. My hematologist wonders if the warafin is part of this. Basically they want to know why it is growing. I'm now concerned about all the cat scans, pet scan and x rays taken. They want another x ray when I see the lung doctor. It's been almost a year and i still get random pain in the lung. Of course sticking a needle in there didn't help.

On another note. Since they want me on blood thinners for ever, I have slowly returned to eating everything that is good for me including fish oil and other supplements. Going off it for 5 days to have the biopsy was also scary. They get you so damn paranoid. I have found that a very low dose of adivan is good to have around while waiting for test results to come back. I could share much more but this is enough for now.

M 5 weeks ago

Hi Everyone,

I am so happy to stumble upon this website. It is so difficult to find information on long term recovery for PE so this makes me feel better knowing I can get help from others and learn more. No one really knows much about it, since it varies so much between everyone. I am actually partaking in a study right now in Toronto that is trying to examine long term happiness and recovery after a PE. I am excited tos ee what comes of it. Though, results will vary so much from each participant im sure. So ive been doing breathing tests, walking and biking tests, cardio ultrasounds etc. I feel good knowing im in this study, as im being monitored. I am also worried about when I need to get off coumadin. not sure if that will be 6 months or a yr (they havent said yet) but im one of the 30 odd percent of people diagnosed with PE that they arent sure why I got it. so knowing that, makes me worried to stop taking medicine incase it comes again. I saw some things online that suggest that some autoimmune diseases can cause blood clots. I am currently getting help with that to see if there's one that i have that caused the PE. i also have a clot in my leg still and clots in both my lungs. im only 26 yrs old and everyone (even in the hospital) always seem so shocked to know what happened or why it happened. i never had a swollen leg but felt like i had a pulled muscle in my leg for a week on and off. Who would ever think that was a blood clot? I feel that there needs to be more education on the symptoms bc I don't know many people who know to go to the hospital when they have that. Additionally, i didn't rush to the hospital bc i thought it would have been a panic attack that i was experiencing (bc I never had one before and I am an extremely healthy person(I thought) so I figured it couldn't be anything too serious). Anyway, I could go on forever about this but I think it's important for each of us to spread the word so we can potentially help others. Thanks so much for starting this forum and website and helping us.

Shelley R, 4 weeks ago

An update for you all because this PE issue for all of us is so important and there is no place to go for support really. I live in Vancouver, Canada BTW.

I had a massive saddle PE on Oct 18. Then a lung hemorrages and bad infections, often I am subtheraputic on warfarin and end up in the outpatient of the hospital to get enoxoperin shots while getting warfarin up to 2.5 where hematologist wants it for now. I have left chest wall pain now and it is not my heart - my heart seems to be fine per doctors in ER. So this is being checked. I had CT scan early November but it showed very minimal change in the PE from Oct 18. Had another CT scan Jan 3 - showing some improvement but the report from radiologist in hospital was not final - I was told there are nodules showing. I see doctors end of this month: 1) Pulmonary doc - go over results of Jan 3 CT scan, see about coming off home oxygen (which I have been on since release from hospital in Oct and subsequent visits to my home by the Respitory Therapist (Dec 2011 last visit show) my 02 sat on walking goes down to 90% - up from in the mid 80s during Nov visit. Will see Resp Therapist at home again in a few weeks. 2) Hematologist/Oncologist - seeing her at the beginning of Feb - 3rd test will be done for antilupus anticoagulant. Showed positive for 2 tests in Oct. Had very bad infection then though too. Also being tested for lupus, rheumatoid arthritis, plus I am having some issues with high platelets although the numbers have stabalized since November - the counts were in the millions and are now down to approx 700,000 which is still high but better than before. May have a myelodysplasic syndrome or myeloproliverative syndome - will be going over this in more detail on my first post-hopsital visit with hemo/onc.

I see me regular GP every 2 weeks for followup. INR is very unstable even though I eat consistiently. It seems even taking a tylenol can throw my INR off. I have had no adverse side effects from the warfarin and have no problem taking it. To me, it is my lifesaver and like a few people who have commented on here, I am very scared to eventually go off of it.

General feelings: Boys/men may wish to skip this part. Ever since I have been on warfarin I have had 3 menstrual cycles. The first 2 were okay - much less clotting that I had had in the previous years. The last period at the beginning of this month was awful. I woke up on the 2nd day of period and my bed was covered in blood. It was literally pouring out of me. If I stood up, the palm of my hand would fill with blood. Using a tampon and sanitary napkin would need to be changed within the hour. This went on for 2 days. I was told thim may happen. When I see the hematologist at beginning of Feb will discuss with her as she said to contact her. I did not panic as I also have had 2 episodes of bleeding heavily from my rectum and nose and went to ER and I ended up being fine, so with this last period, I took the wait and see approach (with my phone at hand ready to call 911 if it got worse LOL).

I get left chest wall pain and nobody seems to know where this is coming from.

Am very tired. Have emotional ups/downs from time to time as it can all be overwhelming.

I have a question for all of you - how long were you off work for you massive saddle pulmonary embolism. I am hoping to go back to work after I am off oxygen on a graduated return-to-work basis. I would like to know how others felt about going back to work and the timeframe in which they did. Thanks so much. Hope all of you are doing well and getting better with your PEs. They are the scariest things....Hugs to all.

SJE 3 weeks ago

I am now 4 months post PE / DVTs. It has been a challenge. Since sept 11 (yes, great anniversary) I have been diagnosed with A-fib, GERD (reflux), sleep apnea, high blood pressure. And I have had many reactions to the meds (dizziness, tremors etc). I have been hospitalized five times. And I gained 25 pounds.

On the positive side, recent MRI shows the bilateral PE is gone. I am still working remotely and definitely not up to my previous level. I will be taking my first flight later this month. But my energy level and strength are still low and it still seems like a huge hurdle to climb. I joined a gym and am starting to work out. In general I have been very lucky with my physicians and treatment. I will be seeing a hematologist in the spring to see if I can get off Coumadin. I do believe the apnea and weight gain are impacting the recovery and those are my short term goals.

The moral of the story is you deal with issues daily and remember even set backs are steps toward ultimate recovery. I have learned so much from the postings on this site, not the least of which is that I am not nuts, rather encountering what many of this group has encountered. And for that I am very thankful.

geert 3 weeks ago

Great info in this hub, and thanks for keeping it going. I had a leg thrombus 3 y ago, which was treated with 3m warfarin. After that I had another one (undiagnosed) 1.5 y ago after a flight to Asia (self treated as I always carry around my Lovonox and my wife is a medical provider). 1.5 m ago I started running again after 8 m of rest for a torn meniscus, and continued having left calf pain for 2 weeks. No respons to treatment (I am a physical therapist who treats this daily), and difficulty with finishing my workouts (my normal routines I do 4 times/w)

made me go to the vascular lab. Result: 5 cm thrombus in the knee and 2 PEs.(luckily I already started Lovonox that morning. I resumed working 3 days later, but now limit myself to 1/2 days. Constant low grade pain in chest, and tightness/pain in calf (3/10). I am expected to be on warfarin for the rest of my life, so I decided to not let this change my daily routines. I work out 3 times a week now (basic weight training and cardio, keeping my HR around 120 for 45-60 min and go for a max discomfort of 5/10) . This is in preparation of my ski trip in 3 weeks, where I will leave the moguls to the healthy people, and suffice with skiing with my wife and 6 y old. I am not sure how I will do with the Vail altitude, but I will see. The last thing I will let this bump in my health do, is force me to change my life style if I do not need to. The way I look at it, there is a pretty good chance I won't die of a heart attack now that I am on coumadin :).

Best of luck to you all, and don't let this thing beat you!

Deni 3 weeks ago

Thank you all for your posts. I suffered my PE in late July 2011. I am 33 (32 at the time), I don't smoke, I work out, I don't drink... the PE was definitely a surprise for me. Since my diagnosis I have been placed on life long Coumadin therapy. I have some resistance to the medication, so I take 40mg everyday. I still experience chest pain and shortness of breath occasionally. I find that it is usually exacerbated with activity. I'm still a little sad about the whole "life long therapy" but if it's necessary, I'll do it. My kids are 4 and 2 and I definitely want to be around for them!

LJ 2 weeks ago

I had my bilatral PE in Feb 2012 after knee surgey gone wrong. A year later, my leg is finall stable to go running again. I just ran for the first time this week and noticed chest pains and shortness of breath.

Now I realize my cardio is terribe after a year long break with any real exercise, but the pain lasted off and on for the next hour. No pain in the left arm or jaw - so I'm not worried about a heart attack. But has anyone else had the PE like symptoms after exercising?

J 2 weeks ago

Thank you for your article. We found it very informative. My mom had a PE a month ago. She is having a hard time getting her INR in a therapeutic range. Currently she is still taking lovenox shots with warfarin since leaving the hospital. Recently she stopped taking Dilantin. Can that effect INR? Should she consider Coumadin instead of generic?

MPorter 2 weeks ago

Thank you so much for this article. You have answered everything I was needing to ask. I suffered my PE just 2 days ago, at the age of 38. After specking to my family Phy, I was told to go to the ER. I felt silly going, kissed my husband and kids, and said I would be right back. Well, 2 days later, I am, thankfully! I am now taking the Lovenox shots with Warfarin. I am still feeling the heaviness in my chest and shortness of breath. And like others, every little twinge in my legs, I wonder. I didn't get much info on how my recovery would go or what to expect, until I read your article. THANK YOU! I now know what to expect. My only concern is that my 1st follow-up appointment is not for 1 week. I wonder if it should be sooner to check my blood levels? I will surely recommend your hub to anyone.

B 12 days ago

Thanks so much for this site. It is exactly what I was needing. I had a nagging pain in my left calf for 4-5 weeks and I thought I had pulled my Achilles tendon. I went on several trips during that time, but last week after I returned to Seattle from Boston my calf pain was realy bad. Then I noticed my lungs felt "tired" when I took a full breath. I went to my primay care doc and he ordered a blood test which was positive. I got a CT with showed bi-lateral PE. They didn't bother to do the ultrasound on my calf, and sent me immediately to the ER. I spent 2 days in the hospital and came home a couple days ago. I feel pretty normal now. While I was in the hospital, I accepted to be on a clinical trial called AMPLIFY for a new drug from Pfizer/Bristol Myers Squibb called apixaban. The study randomizes me to either placebo apixaban with real lovenox followed by coumadin, or placebo apixaban followed by lovenox and coumadin. My physician and I are blinded as to what I am receiving. They want to see if daily oral apixaban can substitute for lovenox & coumadin for post-PE followup. I get my INR monitored regularly and I go see a special trial nurse and physician instead of going to an anti-coag clinic. I like the idea of finding an alternative to lovenox/coumadin and the experimental drug has done well in other trials. Haven't read anything here about new drugs or trials. I'll let everyone know what I learn.

Jewel 10 days ago

I just got home today after a week in the hospital. I went to bed fine last Monday night and woke up unable to breath for the excrutiating pain from under my left breast, up across the tip of my shoulder and all the way down my back to my waist. My son took me to the ER and they first did an ECG. When that looked fine, we waited 5 hours before getting in to see a Dr. They did extensive tests but never did a doppler on my legs. What they found were a multitude of clots bilaterally. I had no symptoms other that some tiredness over the last few weeks. I had fallen down the stairs 4 weeks ago and thought I may have cracked my tailbone but no big deal. I also was on birth control pills, but no longer lol. I had a fairly easy recovery in the hospital but am still experiencing alot of shoulder pain and shortness of breath. My biggest issue is concern over going to sleep and if I will wake up in the morning. I'm just so scared about this whole thing. It's nice to be home but noone's checking on me here. Thank you for all the information, it is invaluable to those of us in this situation and I will definitely be checking into the support group as well.

Paul...from wales 9 days ago

Thankyou so much for your great insight into this seemingly common problem.

Am am 65 and just discharged from hospital with usual aftercare follow up.

This is my second Embolism last one in other lung 7 years ago....I still work a few days a week in heavy industry and although i fully understand after last episode how long the "recovery" can take i am afraid the people who employ me dont...they expect a quick return to work!! A i believe my health is more important than few extra shillings then i will shortly be reviewing my options.

I too suffer from the after effects of breathing problems and discomfort which still remain with me to this day.

Now i have been lucky enough to survive this second Embolism i know i will recover but albeit a very long process...So i say to all who read this...YES it will change your life but the secret is to adapt to your new life as soon as you can.

My grateful Thanks.....Paul Baker...South Wales U.K.

poshpadz 9 days ago

Hello, I have just returned home after suffering from a pulmonary embolism this past week.....I am scared to death!

I am a 44 year old woman who is in good shape and have been in good health overall until last week.

I had been feeling very tired and stressed as well as having a shortness in breath for the past 2 years and it seemed to get worse a couple of weeks prior to my episode, but I just chalked it up to overwork and stress as my business is a full time 7 days a week position with high levels of long hours and daily challenges.

I hate doctors & hospitals and am very head strong and self reliant. So when I started getting tightness in chest and pain along with an increased amount of shortness of breath on a daily basis for 2 weeks straight I just thought no need to worry or go to doctors as I can deal with it.

Finally the pain got so bad that I made the decision have my fiance' take me to the local ER.

On the way my hands got numb, my face & lips got numb, the pain in my chest was excruciating, I could hardly breath and I honestly thought I was going to die in the car on the way to hospital!

Thank Goodness I made it, and at first everyone in the ER was taking my symptoms very lightly saying that I was just having a panic attack.

A cardiologist thought I should get a CT scan,and then they found that I had a pulmonary Embolism in my lower right lung and I was admitted immediately to critical care.

Lots of questions and blood test ruled out all the normal causes for the lung clot, and everyone was stumped. They did a ultrasound on my legs and found nothing that would be typical for the cause of the clot.

After that they put me on Lovenox shots twice a day as well as a Coumadin pill once a day.

Blood tests did find that I was dangerously anemic which would help explain why I always felt so fatigued all the time.

A hematologist insisted that I get intravenous iron to raise my levels which also worried me as I have always been highly allergic to most medications and am ultra sensitive to many things.

He suggested Infed, so I checked it out on my Ipad and saw all the possible allergic reactions....which also said they must have a "crash unit" in the room and ready when giving a test dose as it could cause Anaphylactic shock! I said "NO WAY" to that drug and was very upset that they would even suggest it given all of my medication allergies which included Penicillin, Codeine, Morphine, & Percocet.

He then suggested Venofer which was a "safer option" so I read up on that one too.

It seems much safer so I gave the OK for a test dose....Guess what? I had an allergic reaction to it!

After getting thru that added drama, I then said I would not be taking anything further for the iron issue as I had enough on my plate to deal with and to me the iron deficiency was the least of my problems at the moment.

They suggested that if I did not get my Iron levels up I would need a blood transfusion. I said that's fine but right now I want only to deal with the blood clot in my lungs.

Also as they could not figure where the blood clot came from I asked them if it would have resulted from the fact that I suffer from terrible bleeding and clotting during my menstrual periods.

* as a side note my gynecologist found I had several fibroid tumors a few years ago which contributes to my monthly agony*

The hematology doctor said this has probably caused my severe anemia.

I then recommended they do a CT scan of my lower abdomen to see if there where further issues in that area that may have caused the embolism.

They found that there were a large amount of "issues" down in that area that I should go back to my gynecologist for to discuss further options....not good news it seems and now I have that to add to my worries.

Long story short, I have just returned home yesterday after a week in the hospital with a INR level of 1.9 and feel like a hot mess!

I have been given 5 mg Warfarin pills to take daily and am due to see the hematologist tomorrow along with my regular GP to test my INR level again.

I am exhausted beyond belief and am scared as hell!

Today I feel so weak and very anxious as I totally understand that I am very lucky to be alive at this point.

I found this page as a result of not knowing what is going to happen next as nobody gave me any information on what to expect and what I should do for my recovery.

I have been very active with a go, go, go attitude which has made this experience very mind numbing to say the least.

What am I supposed to do? How should I be feeling? What are the danger signs I should look out for? Will I get better? Will I have another embolism? Will I die from this?

Very scary indeed!

Reading thru your story and that of the many others I feel somewhat enlightened but again very very scared.

I have been feeling a lot of aching in both of my legs today along with the shortness of breath and extreme fatigue.

Should I call someone? Should I go back to hospital? Is this normal?

Also my period is due sometime in the next week, and this has me shaking in my boots!

I just don't know!!! I feel so depressed....keep crying on and off.

I also feel very guilty as my fiance is my business partner (we run our company together) and he is now having to try and run the whole business on his own which is extremely difficult.

There is no way I can work at the moment and I have no idea when if ever I will be able to get back to work and back to living a "normal life".

Any thoughts and or suggestions would be so gratefully appreciated.

Once again thank you for this site!

Kaylyn from Florida.......

lfahl 7 days ago

It has been one year since my PE was diagnosed. I have progressed with treatment much as everyone else. I am doing fine except for one major thing for me. Whenever I exercise I have breathing problems. I have shortness of breath. I stop the exercise shortly after the onset and rest. The breathing returns to normal. This breathing irregularity seems to occur if it is too warm or too cold. I had a ct the first of October which indicated everything was fine and was taken off the coumadin. The middle of November I had a d-dimer run and everything was fine then, too. How can I find out if my pe is dissolving or if it will be a permanent part of my lungs because it has encapsulated? I am assuming that nothing else has gone wrong.

alison 5 days ago

i cant thank u enough for writing your story, i have 2 pe and i have the cough and the high heart rate, the doctors were the same with me and didnt have a clue about my recovery time, reading what you wrote has gave me alot of answeres to the questions the doctors never answered and i cant thank you enough for that......be well and good recovery to you xxx

Caren P 19 hours ago

I can never thank you enough for writing this down...I have just come out of hospital and feel that I will be this way forever...but after reading this I realise I won't...each day is slightly better..once the pain goes life will improve. Thank you again