Hi Kelly,
I'm not sure most doctors understand the psychological aspect of recovery from PE. But ultimately, you're the expert on you, and if you have concerns, it's your right to find a doctor that will address them. I didn't have clots originating from my legs so I can't talk to the swelling and pain you're having, but the chest pain and heart rate issues are common with PEs. Recovery times vary considerably, anywhere from a few months to a couple of years. With massive bilateral PE, who's to say how long that will take. Personally, I've had two CT scans, two echocardiograms and stress tests, ultra sound of the abdomen and legs, and genetic testing done over the past two years; so I pretty much know where I stand. During that time, I was frustrated many times with care I was getting, and actually changed doctors at one point, but now have found doctors I'm comfortable with. Best wishes to you on your recovery journey :)

Some doctors, not all, who see a certain condition all the time become immune to the psychological effects this newly diagnosed condition has a patient who has never had, in this case, a blood clot. The how, why, how long goes unanswered and though the condition could be mild in nature, to you as a patient it can be overwhelming especially when a doctor is not taking the time to address your concerns and calm fears associated with this medical condition.

Below are several resources that you may find of value:

http://patientblog.clotconnect.org/2012/02/28/psychological-impact-of-having-a-blood-clot/

http://files.www.clotconnect.org/DVT_and_PE.pdf

R/
Tom

Kelly, I really feel for you because I know how difficult it is to figure all of this stuff out while recovering. I mean, it's such a big event in the moment, then usually we go home, and really we get relatively little medical attention after that except for having our INRs checked regularly if we're on warfarin.

I also had massive bi-lateral PE, so physically speaking, I'm coming from your "world" in terms of recovery. Still, at this point in time my tendency would be to agree with the pulmonologist. You're so early in recovery, and I know it doesn't feel like it to you, but a couple of months is still just the beginning. It takes a really long time to have much clue where, exactly we are physically. You didn't really say in this post, but did you have DVT in your right leg? That's my assumption since you said it mostly hurts on that leg. A lot of people actually get more pain from the DVT or even the PE after they get home from the hospital. Even what you mention about the fast heart rate sounds very common to me. For months after PE my HR jumped up pretty much every time I moved, but my BP stayed extremely low. The protocol is usually to wait about 6 months into recovery before doing additional or follow-up testing on the heart, because a massive PE does cause strain on your heart. If you were to test that now, it would likely show some diminished heart function, but that type of damage usually resolves by six months into recovery on its own. That's why the pulmonologist says to wait. He, being more familiar with this type of case than the others are, is probably aware of the futility of extra testing now along with all of the additional, probably unnecessary, stress it can cause the patient. If your other doctor and nurse are less experienced in having a young patient survive this level of PE, then they may have unrealistic expectations as to how quickly your recover. You're only about two months since diagnosis, right? Well, think about how much time people are given to recover from something simple like an appendectomy or gall bladder surgery. What you had was way bigger than that, and your recovery will be take longer than some easy surgery would.

Obviously, though, if you're getting regular, severe chest pain, severe edema in your legs (and it's probably the edema the nurse is more concerned about than the leg pain, swelling in both legs can be a heart-related symptom), then you probably need to be checked more thoroughly now rather than waiting. But the way I'm reading it, what you describe sounds pretty normal for the timeline of your recovery, even with the edema. I would guess this stuff will resolve itself over the next several months. However, your doctors know your case specifically, so to some degree you have to decide who you trust combined with how you feel about it. If you could easily accept that what you're feeling is pretty normal for recovery, then that's probably what I would tend to think it is. And if you're still having significant symptoms after six months, it would make sense to revisit the situation with your doctors.

Thanks everyone! I had a weird experience when I elevated my legs as my doctor requested to reduce edema, I felt a rush of something down my legs and to my head. I've been having occasional headaches since then but overall I am feeling better. And my chest pain reduced significantly and my legs feel much better. Who knows, maybe that is an indicator that edema was related chest pains. I think I'm also ready to get off oxygen but all my pulmonologist said was to monitor my O2 at while doing strenuous activity. I feel kind of weird not doing any special tests before officially getting off of O2.

@shilosmommy I think you're right, I'm just going to wait as the pulmonologist requested and not worry too much. When I recently saw the CT scan image and how large my infarction was, I think that gave me a sort of reality check on my recovery time and why I'm still feeling this way. And you're right I'm only about 2 months into my recovery. I never got an answer if it was DVT or where the clot started, they just said I really unlucky and it was due to travel. They have just been assuming it started in my leg, which I understand that assumption considering how much I travel. I lived with mild to severe PE symptoms for 4 days before going to doctors and during that time I never had pain or swelling in my legs.

Thanks again for the reassurance. I feel a lot better about my circumstances.