If you wouldn't mind adding me, I would appreciate it.
About 16 months ago, I was diagnosed with pulmonary hypertension. At the time, I didn't have many symptoms--none that I'd identify. I was walking about a mile a day and able to do whatever I wanted. I was tired a lot, but I have three teenagers to keep up with! However, this was diagnosed because of an echocardiogram I had, due to something that apparently wasn't a heart attack. I had a sleep study and was told I have severe apnea, so have been using a CPAP. I felt great for a few months, then became tired again.
The problem was that we had no insurance. I waited 11 months to be put on Husband's insurance, and it takes almost half of our income. After that, I had another echo and further tests, which showed that the PH hadn't progressed much. The doctor didn't want to pursue it, but I insisted and went to a specialist. Recent tests, 4 months later, show that my PH has progressed quite a bit--and my symptoms have, too. Just doing ordinary food shopping tires me out, and walking to get the mail or newspaper leaves me out of breath. This is not good.
I have had more testing--the shortness of breath isn't, unfortunately, in my head--and the latest echo shows that my heart has been damaged. I am now waiting to see the specialist--late Feb. was the first available appointment. At that time, she'll determine what has caused this and what we can do about it. Until then, I don't know what's going on.
Unfortunately PH is a progressive disease, although recently new treatments have been added that can lengthen life. These are expensive, and it was necessary to wait until I had insurance to pursue any course of action. Just paying the copays leaves us making payments for a long time.
I am trying to continue to live my life, but I am exhausted all the time. I am not sleeping well due to muscle spasms in my back that no one seems to be able to help--I've tried the prescribed muscle relaxer and it does nothing. I wake up in the middle of the night in intense pain and just lie there until morning. I am limited in options medication-wise due to the PH.
Sorry to go on about it, but I would be grateful for your prayers.