This page has helped me get through some of my most challenging times.  By reading what you have gone through, identifying similarities with us, and your future has made me hope that there is a future for me.  Today I'm angry and scared, but I have life and even though hard to see today, there is hope. I want to share this part to get my frusteration out and part for someone else out there who may be looking for someone similar to them. Anyone else have CTEPH?

I just got a new diagnosis on Tuesday.  Feeling like life is shattered again when it was starting to look up.  I thought my test and appts. were on downward slope. I signed up for a professional certification test, started job hunting again, started dreaming of vacation again.  I know I’m not better, but I was trying my best to accept where I am and what I can do now in this post PE world. And now that is on hold again. I want to survive. I want to thrive, to be back to who I was again.  But if I couldn’t be that, I could be happy with that I have. I have life, and no more oxygen tank. I can ambulate, I can live on my own, and I was starting to feel closer to normal again. But got a new set back.

I am a 36 year old female. I was diagnosed with a saddle PE July 13, 2018. (and more clots in the collection) Almost to my one year anniversary. The doctors concluded that it was because of Antiphospholipid antibody syndrome (APS). I was started on a blood thinner, Xarelto and went home with 3 ltrs of O2 at all times. At my follow up in October, instead of getting better because of the blood thinner I actually made MORE clots. I developed a 1.2 cm clot in the right atrium of my heart and another in my right ventricle.  They then decided I had to have coumadin/warfarin and I had open heart surgery on Nov. 1. I talked the surgeon into getting out the saddle PE too.

I thought that I would be on my way to recovery at that point.  I was so happy that the worst was over. But then I plateaued in my recovery.  I still get out of breath doing things even though I thought I should be improving.  I started working out at the gym, but can't seem to get farther even though my gym partner’s endurance is building up.  I am doing the things I want to do, always a question the dr ask, but not at the pace that I want. I used to be able to haul cinder blocks around my garden, shovel truck loads of mulch, push around a wheelbarrow wherever I wanted it to go, haul my 50lb bag of dog food around with no problem, take a 2 mile hike in the woods, swim for hours.  To answer my doctor’s question, can I still do those things, just not as quickly or for as long. I have to carry a chair around with me to sit in always. I have to make everyone wait for me to catch my breath at a music festival instead of walking to the good spot. But I was accepting this. And my doctor thankfully was listening to me instead of just looking at my activity as I was cured.

My doctor continued to run test February, March, May, June.  The last test was a right heart catheterization at rest and at exercise.  Most people I know didn't know they could do a right heart at exercise.  It wasn't so bad of a test. And it did show why I have such a hard time at exercise. This simple test is what both is saving my life and ruining it at the same time.

Newest diagnosis is Chronic thromboembolic pulmonary hypertension (CTEPH).  Which from what I have read is another second rare disease.  Undiagnosed it can kill quickly but it seems to be treatable with modern medicine.  The treatment though is what my problem is. I know I shouldn't complain, there is a treatment, it’s not a death sentence. But the treatment is either a ballon angioplasty multiple times or a one time crack my chest open again surgery.  Either way, more months out of my life recovering and going back and forth to hospitals. And the closest hospital to me that does these specialized procedures for my rare condition, 9 hrs. away. I am praying for God to make me grateful for the choice of life but I’m so angry that this krap drags on for longer. And scared. But angry is easier. Now I’m just on hold waiting again, for insurance, for hospitals, for doctors to tell me when we are going to do the next thing. Instead of picking up the pieces and moving forward.