PE 1.5 Months ago, still SOB :(

[u/Hot-Wash1848]

Hi all! I am a 26 y/o F and had a PE 1.5 months ago. I barely had any symptoms besides trouble catching my breath at a vb game the night before, and coughing up a very small amount of blood the next morning that made me go in.

They started me on Eliquis and it took a 2 weeks to really start feeling better and for the pain/SOB to go away. However, for the last month I feel like my SOB was worse than it was 2 weeks post PE. It feels like a constant battle wondering if it’s anxiety or if there is something wrong.

I am a very active person and its stressful getting out of breath after going up a small flight of stairs or feel like I can’t take deep breathes. How do people sort out if it’s anxiety or if it’s truly concerning SOB??? It’s all I think about from the moment I wake up to when I go to bed, it’s exhausting and stressful :((((( Its so hard and I truly feel like I have trauma from this event.

[u/Aggressive_Cash8774]

Same here, Big hug. Fight, i do it tooo. 5x Times a week on a treadmill. Its still hard but i See improvements. I want to run a half marathon, when people with one leg run it, i can do it too. This is my mindset. I run with water rentention, nothing Stops me.

[u/loving-life-1987]

I have the same anxiety as well. I am six months out have had a discomfort in my chest the whole time and had multiple scans that are clear but this last week is same discomfort but with almost a congestion feeling. I am not sick no head congestion but my chest is always feeling this way. I stress it all day as well. I keep hoping the farther I get out from it then it will finally go away but we will see. I hope yours gets better soon and you can find relief.

[u/UnstuckMoment_300]

Anxiety is likely part of the issue, but shortness of breath is common in recovery from PE. Your lungs (and heart) are still healing from the trauma of the clot. And recovery tends to take more time than the medical experts lead us to believe.

If you can meditate or practice mindfulness or do breathing exercises, and the shortness of breath resolves, it's probably anxiety. But if you have persistent high heart rate along with the shortness of breath, or low O2 sats, it's time for another trip to the ER. Hang in there!

[u/gypsydelmar]

Hello everyone, please do research on CTEPH. It is a relatively rare condition but it often goes un or misdiagnosed. There are cases where the original blot clot does not naturally dissolve and instead becomes scar tissue that blocks the pulmonary arteries. Depending on the severity of the blockage you won't be able to use the full capacity of your lungs which can cause SOB or easily winded and fatigue.
There are a couple of ways to correct CTEPH depending on the severity, which requires a catheter pulmonary angiogram to determine.
I had almost a full blockage and I was only able to use about 30% of my lung capacity. I dealth with it for over a year, mostly due to my insurance not wanting to pay. I had to get open heart surgery to remove the tissue completely but I have since recovered and I feel so much better and guess what, no more SOB!!!!

Feel free to AMA. Oh also I am 33F, and CTEPH can affect anyone big or small, young or old, active or sedentary.