Everyone is different, but I experienced the exact breathing thing you described on and off for a full year after my PE. Anxiety certainly made it worse, but I believe it was continued effects from the PE. The after a PE is just fraught with worry. It doesn't seem that Dr.'s are very aware of how often people's symptoms linger and come and go. That is why I found this support group helpful.

Most people have sob, while recovering from the PE. Fatigue and cough is also very common after a PE. I was told to expect both for up to a year out from my PE. The year was based on how massive my PE was. (very helpful doctor.) I know many people in the group also had anxiety.

plain and simple -----It's both.
Your gonna have SOB and your going to have anxiety. Not being able to get your breath is a very scary thing, then we think about it and that exacerbates the whole problem. Yes everyone is different and we all dealt with the issues differently but it's just one of those things that come along with being a PE survivor. By the way it does eventually get better.

I have to agree with Ferr. It is a pretty chicken-and-egg scenario. Is the SOB causing anxiety? Is the anxiety causing SOB? They are almost impossible to untangle this early in recovery.

I've had all of this at times and none of it at other times. I haven't been able to figure out why it comes and goes and what makes it worse. Now, ten months out, I am starting to figure out what the "new normal" is for me and realizing when to worry and when not too.

It is FREAKY early on (and sometimes later too) but it does get better. I found Ativan very helpful too for a while, but then wound up on a long-term anti-anxiety med that has been very stabilizing.

Hang in there! It does improve...

were you on BC for heavy bleeding or do you have low thyroid? If so, check your ferritin levels. My hemoglobin and iron levels were normal but I had no stored iron in my bones and a lot of what you are feeling are also symptoms of low ferritin. My two illnesses just hit at the same time and noone was looking for the lesser one - just kept telling me it was a panic attack or anxiety when I knew it was not. Good luck. You have to keep vigilant on your care. Good luck to you.

I was diagnosed in July with massive PE, bilateral "saddle" pe (blocked both pulmonary arteries). After spending 6 days in hospital with Morphine when i needed it, which was seldom, I went home and experienced even more pain and SOB than I did when diagnosed. After a few trips to my doctor and an ER visit one month later (no new clots found on repeat CT scan) I was told that with the extent of my PE there was definitely trauma to the lungs which caused lots of these symptoms. I agree that it's a combo of anxiety and PE effects. Everyone is different, and some of our members are out running marathons after PE, some have more extensive recovery periods. I'm still recovering, on oxygen at night (started 2 nights ago) and getting pulmonary rehab. I still have occasional pain and SOB after 3 months. Fatigue is also part of recovery. There's no magic number of days it takes to recover, each person is different and may have different risk factors and other problems along with the PE. The best advice is to listen to your body, call the Dr. if you feel it's necessary, and try and become active as you can tolerate it. If you feel like you're in trouble and can't breathe, by all means get it checked out!

i had my pe in august 2010, and i also had the same problem with breathing ect. it does get better i promise you, and yes i sometimes do get it but now i know what it is, thanks to the people on this forum! it help to talk to other survivors about it!!

Good luck! And hang in there,
we are here to support and help you!

It will get better!!!

Wow, what a great community. Thank you soooo much for all of your replies!!!

I will take everything you say and use it.

I had a good day yesterday and then this morning had what I am slowly starting to refer to as "episodes."

I am having my blood levels checked today and am in some sort of coumadin study offered by the hospital so I will be able to talk to the pharmacist today.

I will also ask my doctor about my ferritin level and I was thinking that I could benefit from pulmonary rehab.

Thanks again, just knowing that I'm not alone is a relief.

I think the thing that is most helpful about this support group is the reassurance that what we are feeling is part of the process of recovery and not just "in our heads". When our symptoms can't be explained by a test that identifies a specific cause (extreme and sudden fatigue, cough, sob, chest pain) and our doctors look at us like "I don't know what to tell you - I can't find anything wrong", it is easy to think we're just overreacting. Having had my bilateral PE's a month ago today, I've experienced most of what you're talking about and it wasn't until I got on this site and did some other reading about surviving PE that I realized this is just part of the process. The lungs are delicate organs and a PE of any sort does damage which takes a while to heal - a long while. It is hard to be patient or accepting of the effects unless you realize that this is pretty normal. This group has helped me understand that. However, just because it's normal doesn't meant we don't need to stay on top of it. It is important to keep your doctors informed and walk with them through the process. I agree with the others - it will get better!

Susan,

I had my PE on 10/29 and I know exactly how you feel. I have SOB and some days it makes me so anxious that my chest gets tight, I cry non stop because I'm afraid and I feel every twinge/ache in any part of my body which only makes it all worse.

My doctor prescribed a mild anxiety med ~ Zanax. I just started taking it last night so not sure how I will fare. Based on what I've read on the posts so far, it sounds like we will have SOB for some time but will get used to it.

Hey Susan,
I remember that feeling. I would say it's both but one causes the other. I believe the memory of the struggle brings on the agst of a possible repeat and the anxiety raises. I remember the altered breathing and the air sound in my ears and the haze in my vision.

I began exercising by walking through my apartment and slowly that faded away. Someone on this site told me to do seated breathing exercises to music , just changing breathing speeds and depth of breath in attempt to re-teach your body how to breath. It helped alot and makes sense.

The warfarin seems to affect people in different ways. Studies are all over the place and I think I wanted to blame the warfarin for everything. hahaha........

I'm one year post- pe and I assure you that it gets better
(even if there is BS that happens during)

Take care and remeber to get and wear the stockings. . . compression, compression, compression!!

Thank you all for this wonderful group! Reading the posts has been so helpful for my emotional state. I was hospitalized 3 months ago for multiple bilateral pulmonary emboli (docs said there were too many to count). In general I have been doing well except for the fatigue and the occasional bouts of shortness of breath. Thanks to all of you for for letting me know I'm not just being "hyper-aware," as one doc so rudely dismissed. I feel lucky that I haven't experienced the anxiety at the levels some of you have. And thanks for giving me "permission" to call my (outstanding) GP if I really feel something may be wrong. I will definitely be checking back in often.

I wanted to ask ~ is there anyone out there that didn't go through the anxiety phase that so many survivors, myself included, have gone through? Please share how you coped.

For those that have gone through it and have had to take anxiety meds to get through it, is there anyone that only had to take the meds for a short period of time maybe just at the beginning?

It's been almost 11 months for me now and the bilateral PEs are still there. I have been on Xanax from the beginning and am still taking it - it does seem to help a bit.

I also have occasional days like today when I woke up with pain in my calf muscles and pain in my chest - that brought on a panic attack very quickly. UGH. I'm not ready to give up the Xanax yet and my PCP is giving me Pristiq to take in the morning also.

I wish the Drs would make up their mind about exercise - days like today which left me exhausted - do I just rest or do I hit the stationery bike, etc.?? Don't know......

I am also new to this wonderful support group. I am a 67 year old female. On June 6 of this year my best friend, from the time we were children, died from a blod clot. I am devastated. Three weeks later I was dx'd with small pulmonary emboli in both lungs. My only symptom was sob which two different docs said was from the pneumonia I had in April (I wonder now if it was really pneumonia as have some of the docs I've seen.) The anxiety has been the worst part of this entire experience along with sob. I have received temporary relief from some body work but would appreciate any techniques you may have found that alleviate anxiety. Thank you all for your caring and support. I feel like I've found a gold mine.