Hi, I'm a new member. Thought I would share where I'm at. Everyone else stories have made me feel more normal and less alone, so I wanted to share mine in case there is someone else like me looking for answers and common experience.

I have been getting short of breath for a while, looking back prob the last year. I chalked it up to being an overweight asthmatic allergic to everything smoker who's life choices were resulting in me being short of breath and didn't look into it. I am 35 yrs old and other than allergies and migraines, have had no real major medical problems. In June of this year, I became short of breath doing anything at all. Even walking 5 ft away. I went to the dr, had a chest xray and was diagnosed as double pneumonia. After 2 weeks of antibiotic and steroids and not getting better I went back a 3rd time. No more rattle or wheezing, no reason for not being able to breathe. 2nd chest xray. Dr said looks like an abscess on your lung, you need more test that we can do here, pick ur hospital and I will let them know u r coming. So I went to a small hospital close to my family. 

The first small hospital did an xray too and then a ct scan. The ct scan showed the sub-massive h saddle pumulary embolism (categorized sub-massive bit actual reality really huge blood clot), more clots in my lungs, an infarcted part of my lung, (dead piece of lung due to another clot cutting off blood flow) part of my spleen infarcted (dead middle of my spleen due to another blood clot). My pulmonary artery was larger than it should have been because the clot was so big and the artery stretched to allow blood flow anyway. They were surprised I was alive, said they could not handle the surgery needed and I needed to go to a bigger hospital. So I got transferred. 

Big hospital said, you are not crashing and have been living with this for (what we thought at the time) 4 weeks anyway, we will monitor you but want to run test before we consider surgery. We would rather give you clot busting meds than do surgery. Results of rest were, nothing in my legs, so no DVT, my heart is somewhat damaged from this going o  so long and the pressure of breathing so quickly/hard. I also have 2 heart defects no one found before. One is PFO, a hole in my heart that opens under pressure. Which is how a clot got to my spleen. (It never should have gotten there.) So, blood clot meds are now off the table. Since I'm healthy otherwise, they opted for no surgery. I have blood thinners now, and oxygen in my nose until my body heals itself. I didn't see where anyone else has O2 as a treatment. They say the O2 is keeping my lungs and heart from having to work so hard and causing more damage. They found that I have hyperclotting due to genetic blood disorder. Still figuring out which one. 

I cant do normal life activities wo breathing at 40 reps per min and getting my heart rate up to 120 or more. Such as carry a laundry basket from one side if the room to the other with out stopping. I want to go back to work, and my docs gave me no restrictions except don't over do it, but I don't think I should yet. Anyone else have the same struggle? Trying not to push yourself and cause more damage? But really wanting to do for yourself again.