Yeah super sucky. The good news is the PEs probably came from being sick, dehydrated and a little less active. For friends and family, I found it helpful to tell them it's like a heart attack but in your lungs to help them understand the severity. Many people struggle more with the emotional side than the physical, is there any way you could see a therapist to get that support you've been missing?

I have talked to my therapist a couple of times and she has been of no help. Am working with my Dr to see if some of this is a side effect of coumadin. Will see if that helps.

Being sensitive to smoke cleaners etc is really common after a PE. I had a lot of that for a good six months or so. Even still, very humid weather or super cold weather affects my lungs., it’s manageable but it’s still sometimes an issue, and my PEs were overt 10 years ago.

Seeing a therapist was actually the best thing I did during my recovery. Maybe you need a different therapist. Not trying to blames post recovery stuff all on psychology but it’s a pretty significant piece of the puzzle.

I know what your going through! I’m 29 years old and been diagnosed with PE in both lungs and my left lung has slightly collapsed too! What I find the worst if my coping mechanism is nonexistent! I’ve now been prescribed antidepressants! I’m off work, stuck in the house and I’m now taking my frustrations out on my partner! Yip you do totally get pawned off by docs and nurses and there isn’t really anyone who can relate or understand what we are going through!! I also feel lost, vulnerable, lonely, terrrified and angry

Yes I am totally able to relate to what you're saying. I dont know why the Dr always thinks antidepressants will take away everything. It doesn't. I am like you, scared, angry, tired. You think you have good friends but they stay away and avoid you like you have something contagious. My spouse has taken his fair share of my problem, his opinion now is: get over it, you didnt die, just forget about it and they'll go away. I found this website so that maybe I could let other people know there are us that know what you're saying, feeling and not saying, and am always around if you need someone that can relate to your fears and feelings

Hi, I recently had PE's back in May. The funny thing is, is that I also was diagnosed with pneumonia in March as well. The doctors didn't know why I had mine PE's either. It is scary, because I think, did they misdiagnose my pneumonia and it was really the start of my PE's.

Your story helps me, as it is similar to mine.
Thank you for sharing.

I am here for support as well,feel like no one understands and how scary it really is!! I'm here for anyone that needs a friend

How frustrating! I have found the same thing-I went to the ER for pain in April and again in July, 2018, and was diagnosed with "unknown, probably muscular-skeletal" the first trip, and "pneumonia" the second trip. Finally my primary care doctor took me seriously and sent me for a CT scan where they found the clot- went back to the ER, and finally got the right treatment.
Even after being diagnosed, the ER docs had zero helpful information on how day-to-day life would be for me. I left the hospital and had to figure out that exercising was difficult, even though they said I would be fine and had no restrictions. I have come to learn that the ER and hospital doctors are probably giving me information in terms of whether they would need to do anything different medically (like prescribe a different drug or an operation) rather than if it will be difficult or if I will struggle with the outcome of what this has done to my body.
It has helped me to have my primary care doctor to go back to, and call if I have questions or concerns. They know me and they don't think of me as a diagnosis, so talking with them gets me a lot more information on my day-to-day life and struggles. I am also going back in for a checkup soon, so it puts my mind at ease a little bit in the meantime. And if your primary care doctor doesn't take you seriously, maybe try to find another doc!
That also sucks about other people not understanding. I totally get the same thing. But stick up for yourself. If they don't understand, keep doing what you need for yourself. You deserve to do what's best for your body even if other people don't understand!