Hi Colette. I know the feeling well. It's been several years for me and I am not back to normal. What I can say though is that I am getting better every year so there is that. From my own research it looks like two thirds of people are back to normal after two years, which of course means a third of people aren't. It can be a long time but most people do eventually heal. One thing I would suggest is keeping a journal of what you are and aren't able to do. It seemed like I wasn't improving at all but then I'd see someone I hadn't seen in months who would remark on how much I had improved since they last saw me. The day to day improvements can be so small that they are invisible but they add up over time.

You were just diagnosed last month, right? That is not a very long time. It would surprise me if you didn’t have occasional shortness of breath. As you recover you start doing more and that sometimes adds to the feeling of being winded. I felt kind of crummy for the first couple of months. By the third month I felt fairly ok, but by 6 months I was feeling pretty good. And I had massive clots, both lungs, an infarction heart damage, the whole 9 yards, so know complete recovery is not only possible, it’s probable.

I just got back from my surgeon who performed the IVC filter operation on me (he wants to get that removed within next week or week after) but...what disturbs me is he said my shortness of breath isn't normal.

Why do you think he said that? It's making me a bit concerned that he doesn't think it's normal when it seems like everyone here has it post-PE.

How does he know it’s not normal? I mean based on what?

Honestly, I don't know (sorry i forgot to respond)

I kept asking him why he thinks that but he just keeps saying that it's not normal.

I guess I’d ask him if he’s concerned about it, what does he suggest. It’s kind of asinine for a doctor to tell you he thinks something isn’t normal but give you no indication what you should do about it.

Do you have a primary care doctor? Might want to check in with that doctor and see what he thinks.

Is your breathing a little better since you last posted? Any chance some of the shortness of breath is in part due to anxiety?

I asked primary care, he just said "talk to your pulmonologist"
Pulmonologist says it would go away within a few weeks which it has been a few weeks already...

My breathing issues come and go though. There was a huge pause in short breathness then came back out of nowhere, then went away, etc.

I think that is not unusual. For me especially the first 6 months after my PE, a lot of stuff seemed the affect my breathing. Not only loss of conditioning but things like weather (really humid and really cold weather), any cleaning products and aerosols, seasonal allergies. Also my anxiety really made me hyper vigilant about my breathing. I paid such close attention on it that it would increase my anxiety which would aftect my breathing, cause chest discomfort etc.

I don’t want to dismiss anything you are feeling but and if it’s something your doc’s think further investigation they should pursue that. But sometimes it really is just a combination of factors and then when you are stressed and worried, it just can feel overwhelming, physically, mentally and emotionally.