I had bilateral PE's the end of May 2013. I have spells with SOB off and on. So Yes...the SOB can come and go.

Heat, humidity, stress, anxiety,etc can all play a part in SOB along with probably other things as well. Everyone has their triggers for SOB.

When you feel better to start walking or exercising, if you over do it, you may experience SOB. It does get better with time.

That is probably the hardest thing about having a PE. We look okay on the outside and not very many people understand that our insides are having to recover and it takes time.....a fair amount of time!

Welcome to the group. Please read the different posts as they may answer a lot of your questions,etc. There are a lot of nice people here who are way further down the road of recovery then I am.

You can't underestimate the affect of stress and anxiety. I think SOB is likely a combination things, like kslady43 said, and just general recovery.

I suspect you're just exhausted. That doesn't help either.

If your doc gave you the OK to exercise, try to do that a bit, nothing crazy, just a walk in the yard or down the block. It may help you clear your head a bit, it's good for the DVT leg, and it will help get your lungs back in shape.

It's a weird balance between resting and doing. Too much down time means too much time to think. But too much running around will wear you out.

SOB will definitely come and go ... probably for months. You really have to think of PEs kind of like an injury to your lungs, and you'll have to slowly work yourself back to where you were before. It really isn't a direct progression up... some days will be better and some will be worse.

Like, say you'd injured your wrist. Maybe it's really sore for a while but slowly starts to feel better. But you spend too much time at the computer one day and it hurts more later. Another time, maybe you go bowling and it gets worse for a day or so. All that makes sense, right? It's pretty much the same with your lungs...things will stress them and you'll feel worse for a day or so.

I had extremely similar symptoms to yours when I was diagnosed with my PEs (at age 35). Just severe SOB and a tight feeling around my throat. The worst of the SOB passed in a week or so, but I definitely had times when it seemed a lot harder to breath. I'd walk up stairs, go out in super hot/cold/humid weather, be exposed to fumes from getting my carpets cleaned, get really tired or sick, try to do a little too much, or anxiety would take me over.

The real struggle I had with anxiety was that the symptoms were really similar to having clots. SOB, pounding heart, etc. It was hard to know what was a "real" problem and what was just me worrying too much.

Do hang in there. I can understand the fear about coming off Lovenox, although you should be completely covered by the warfarin now that your INR is in range. Also, the warfarin stays in your system longer (several days) than the Lovenox (about 12 hours), so each dose actually keeps you covered for longer than the Lovenox does.

I know you've had a hard time emotionally with everything that has happened. What are you doing to cope? Now's a good time to absolutely pamper yourself if you can. A nice long bath (assuming the heat and humidity don't bother your lungs), maybe a little too much ice cream, time on the sofa watching movies. Also, I know you're having a hard time getting to a therapist, so maybe try some other coping techniques like journaling, meditating, or talking to friends.

My asthma and allergy doctor gave me an exercise shortly after my PEs to help me feel like I was regaining control over my breathing. Every hour, on the hour, he wanted me to take a deep breath, hold it for a few seconds, let it out, hold it for a few seconds. Only repeat 2-3 times each time, otherwise you'll get light-headed. It was easy, and doing that for a couple days made me feel better about things.

Hang in there! It does get better, just never as fast as we'd like.

I think one of the most difficult things about PE is the variability in symptoms from day to day, week to week. I'm 2.5 months out from multiple bi-lateral PE--a very bad case--and there are days when I feel so good and days where SOB is profound. Temp and humidity seem to play a role. I also find that if I'm overly tired, SOB is worse. I have had such a great and large support network, but I would be more comfortable saying, "I feel great," and having that phrase prevail each day as opposed to the ups and downs. The good news--the ups are more prevalent than the downs now. Alas, that just the nature of this thing. Good luck on your continued to recovery and take care of yourself each day.