hi

I too have been told that my breathlessness is most probably asthma although I didnt have it before my PEs.

Have you ever had any respiratory function tests? With mine the did a 'before and after' with a bronchodilator and mine were much improved after. I have now got my asthma under proper control using a twice daily steroid inhaler and a 'puffer' as needed and it has certainly helped although I am still not convinced it is the whole story.

As for your pain did you have extensive PE? My respiratory doctor told me that he has come across a number of people with chronic pain after the event and explained that even a small amount of scaring on the surface of the lung can cause pain as it involves the pleura-the VERY sensitive covering of the lungs. He says that really good pain releif is essential as pain can prevent you from expanding the lung so causing more breathless. I always show his clinic letter to any doctors who ignore what I am telling them and insist on investigating for further PE when my pain gets too bad too manage! (I am still on warfarin)

It took 2 years to get a decent explanation but it all fits my symptoms and allows me to take better control of my life!

Hope this helps

Kate x

Hi TNT,

Sorry you're having "double dose" problems with the PE and asthma. I've had asthma since teen years (so it's been QUITE a while) and have had two bouts with PE. Symptoms can be the same around SOB. In fact I thought it was my asthma kicking up when I ended up with my recent PE incident. I agree with Kate, if you haven't had a lung efficiency test where they make you rapidly exhale into a device, that might help. My pulmonologist told me one of the differences in symptoms is that they can usually hear asthma from wheezing and a clot doesn't sound the same. I usually have trouble with the peak flow test when my asthma is flairing up.
Having said that, I don't recall having pain and tiredness from asthma, just the SOB and wheezing. I tried a bunch of asthma meds over the years and found Symbicort seems to work best for me.

Hope some of this helps you a little. Good luck.

micky

Hi, I have mostly exercise induced asthma. The symptoms were close enough that my doctor thought I was having some asthma problems and a virus when it was actually PEs. I had gone to see him because I thought it was the start of pleurisy. I'd never had that kind of pain with asthma and I've only had one bad asthma attack.

I had a pretty bad asthma attack last year while running in the Sierra Nevada Mountains. Talk about SOB! I don't remember having any pain. I was just struggling to get enough breath to remain conscious. I'm sure that if there had been a doctor anywhere nearby I would have ended up in a hospital for the asthma. It's the worst attack I've ever had and it has made me more cautious about asthma.

With the PEs, SOB was mostly from pain. Unexplained, almost overwhelming fatigue came from the PEs. With asthma I can usually feel a constriction in my chest, sometimes coming on suddenly. If it comes on gradually, I may not be as aware of the change. The asthma will cause me to cough, particularly once I stop running. The coughing can go on for quite a while afterwards, usually 5 to 10 minutes but sometimes considerably longer.

Lately I've been coughing a lot. I woke myself up last night coughing. I seem to have a lot of congestion but it doesn't feel like it's from a virus.

In any case, I'm feeling good enough to still compete in running events. Since getting out of the hospital in March for the PEs, I've competed in 5 races. And made one trip to the ER where they told me I was okay. I can't complain.

I'm not too worried about which symptoms go with which. Either one could end up with me making a doctor's visit. If I need to get help, I'll have no choice but to trust that they will be trying to find out the cause and will take my history into account.

I hope you find some answers.

My best wishes to you,

Todd

I always had some mild asthma before my PEs.....no regular medications for it, but I was on nasonex and claritin for allergies...had an albuterol inhaler for occasional use.

After my PE, I noticed more bronchospasms (where my breathing would catch for a second...had never had that before). These have always made me feel uncomfortable. After a particularly bad allergy season this spring, I went back to the doctor to investigate this asthma more thoroughly. I did peak flow tests and found that I was only at about 80% of normal on a really good day for me (and I am in good shape). Doctor added Singulair to the mix...helped, but not enough. We are now also experimenting with Qvar (a topical steroid that goes straight to the lungs) twice a day. I've noticed a difference and peak flow readings are getting higher. Some bad Fall allergies are starting again.....I've only had to use the albuterol a few times since starting the Qvar (it takes about 3 weeks to reach full-effect). I will see the doctor next week for a follow-up peak flow reading.

I guess that I feel like that since my peak flow meter readings improve a lot after using albuterol...asthma is the cause. If you don't have a peak flow monitor, I would suggest buying one....you can get one for less than $20.

I had shortness of breath for several months before my PEs were diagnosed, but the difference for me was that when I would exercise harder, I would experience a feeling where I just didn't have a breath (not just a tired breathlessness from working out hard). I was also tired from strange things...like just walking to the store.

I pay attention to high pollen counts and bad pollution days...figure if my breathing is worse on a particular day...those things are to blame.

My doctor also said that it is likely that the PE made my asthma worse. The residual scarring from my PE just made my lungs more sensitive and I went from being a mild asthmatic to a regular asthmatic.

I just continue to treat it with medications....take a daily dose of magnesium, eat an apple each day, drink lots of water, and work out (really helps my lungs come alive). I think that if I have another PE, I will evaluate it by noticing that my asthma medications are not effective in treating it.

Hope you figure this out.

Take care, Nancy

Thanks so much guys! Good to have some feedback from some others with more than one lung issue.

The pulmonolgist actually ran a ton of tests on my lungs to evaluate function, capacity, etc. His job was mostly to judge the residual effects of the PEs and he decided they didn't cause much, if any damage. He's suggested I check back in with my asthma/allergy doc for the asthma issues. (They know each other and have lots of mutual respect.)

I'm not sure what counts as extensive PE. I had multiple clots in both lungs but never had intense pain with them--at worst it was a 3 on a scale of 1 to 10. The pain is low-grade but worrisome since I associate it completely with the PEs and not with asthma. I've never had pain with asthma stuff ... just didn't know if anyone else had!

My PEs were diagnosed after about three weeks of feeling like I was having mild asthma attacks. The abuterol didn't help these "attacks," which didn't make sense until I was diagnosed with the PEs. (Incidentally, I went to a minor emergency clinic the night before I wound up in the hospital with the PEs and the guy who saw me said my asthma wasn't controlled and sent me home!)

I currently have an abuterol inhaler and take Qvar in the mornings. In the past Qvar has completely controlled my symptoms, even to the point where all my abuterol inhalers expired because I was using them so rarely! I'm wondering if I have the same issue as Nancy where the PEs have made my asthma worse.

I'm also liking the idea of a peak flow meter at home. Might be worth it for the peace of mind.

I may also have to pay more attention to allergy season. My "nature" allergies aren't very severe, but maybe with the time of year and the state of my lungs, I'll have to think about it.

I'm mostly feeling grumpy today because if my lungs are no longer being affected by the PEs, than why am I saw darn tired! I'm getting exhausted with being exhausted!

I like that you brought up this topic, because I've experienced very similar issues, although I was never diagnosed with asthma prior to getting PE, except on the day I had my baby I suddenly started having problems breathing and the doctor just said "Oh it's asthma" and gave me an inhaler which never helped anything. Of course, I wasn't diagnosed until four weeks later with PE, but honestly, which was more likely to have cropped up on the day I had the baby - asthma or PE's?

In any case, I think it's hard symptomatically for the doctors to know the difference, and the other thing I think is that they don't really know enough about the condition of our lungs after PE. My PE was one of the more severe cases, but I received thrombolytics which really saved my lungs, but they've also never felt right since then, and I'm just coming up to two years post-diagnosis. Don't get me wrong, things are so much better than they were, but I still experience what I generally call SOB, although that's not actually a very effective description of it. I feel SOB, but I'm not actually, as my air flow has been measured and is generally good, my lung capacity is near normal, which pretty much shocked everyone. But I FEEL like I'm not getting enough air. So lung function tests and CT scans, everything comes back looking okay, but what I know is that I don't feel like I did before, and sometimes I have enough trouble getting air that I've passed out. Although my testing indicated that I have no need for an inhaler, my doctor still prescribes me one and has told me to use it when I'm bad because even if it's very minimal help, at least it's something when I'm at my worst, and he also gave me a peak flow meter, which helps me to kind of know when I need to take the albuterol. From what I understand, though, there can be very small scarring on the inside surface of the lung which can prohibit the air exchange in the lung, but doesn't show up on X-rays or CT scans. So the doctor's guess in my case is that the air is getting into my lung, but the lung is only partially working. There is another test which can confirm that guess, but he feels so strongly about it and plus I'd have to pay for it myself, that it doesn't really seem necessary to confirm it. He basically went through the process of eliminating other possibilities to make sure he wasn't overlooking anything, but confirming the lack of air exchange is kind of just academic, there wouldn't be anything to do to make it better.

Sorry for the book on this, but I'm just really saying that I think it's kind of anyone's guess what symptom might relate to what. You're still relatively early in recovery, I personally consider anything under a year that you're not really back to your full potential post-PE, so hang in there and a lot will probably continue to improve. I certainly have continued to improve well into my second year, and part of it is learning what are the triggers for my problems. Probably as time goes on you'll settle a little more into feeling what it your asthma and what is just the legacy of the PE, and you'll learn to work around each problem. It's almost impossible to do this when we're months into the situation because we want the answers to every symptom, but I've found that in my case it's been most beneficial to just kind of let that part of it go, and learn to work with what I've got. I try to be responsible with my health, do what I know makes me feel better and avoid the things which make me worse, whatever the cause of it.

Wishing you some peace of mind!!

I have never had asthma, but I had SOB after my PE's. Hemo doc put me on O2 and when I saw the pulmonologist, he determined that my lungs were fine, that my heart rate skyrocketed when I moved around. His conclusion, my heart was unconditioned after what I went thru and I needed to slowly start exercising and building my heart back up. He's right, I'm 5 months out and was able to mow my lawn. I'm getting stronger but I still experience SOB. I have a heart monitor and I can see that it's my heartrate causing my SOB.

Good luck.

Hi everyone, Its been a while since I posted. Im glad to see this discussion regarding asthma and PES. I started the year with bronchitiis which also wound up being diagnosed as asthma as well. After 2 bouts in the hospital with the asthma, bronchitis and pneumonia I had bilateral pulumonary emboli in early april. Was back in the hospital by early may with pneumonia again. Has been a rough year. Most of my problems now seem to stem from asthma. I have not been controlled at all and am on and off prednisone all the time. Was also diagnosed with sleep apnea. I take Loridine, Advair, singular,xopenex, cardizem lopressor, protonix and zantac. Some of my asthma is caused by GERD. Was suppposed to have surgery next week for the GERD but my pulmonologist was afraid that my astma was too unstable and that I would have difficullty getting off the respirator. Pretty scary stuff for me to think about as I have been a surgical nurse for 30 years. I would just like to breathe normally and stop being so tired. The crummy weather, humidity and heat have really crimped my style. I have not been to work since May. i foud that the PE made me feel like I ran 10 miles, the asthma makes me cough and wheeze. I think that was the main difference for me.
sue