Exhausted and Struggling

I had very little sleep last night and had to be at a radiology facility at 8 a.m. so this will be brief before I take a nap. I went to Philly on Tuesday. It was a lovely day and smooth travel. That's the good part. When we arrived we sat for nearly an hour before being called to the nurse's station. Once there a nurse was being chastised for letting me wait that long when I was the first patient to be seen. (NOT by my PH specialist.) Finally they got my stats and began my six minute walk. I was breathing so hard at one point I had to stop and start a few minutes later. I did worse than I did back in December. I got inside and gave all the information to the "fellow", had an EKG then repeated for the nurse practioner. The PH doc finally came in and looked very deep in thought. He began to say that I was slightly worse, certainly no better. I wanted to cry. I explained I had just gotten over the pneumonia but then he asked if I had been better prior to getting it. Honestly, little, if any. He doesn't think the medicine is working. There are a few possiblilities why not. One is that my body is just not responding. Second is that I might have fluid on me. Fluid will stop the medicine from being absorbed. (To check if this is the cause he gave me a very strong RX to take three times this week to see if fluid comes off.) Thirdly, because my PAH is secondary to my heart disease it may not respond AT ALL. It felt like the floor was unsteady under me. I ask him a few questions and he is deep in thought. I almost thought he was ready to throw in the towel. Then he said "We fight. That's what we're all about. We'll keep fighting." That's all I can say right now. I have severe PAH. From what I have read one usually has two years from their diagnosis to live. I was unofficially diagnosed this time a year ago. I need something to work. If not the prognosis is not good.

Rob had a stoic face and we went to the lab. We had dinner, came home and I only made one call to my aunt. She shows more caring that my mother or siblings do. I had told Rob's Mom I had pneumonia over two weeks ago and she got me an email. I feel so alone, except for Rob and my son Tom. I have to lay down and will write again soon. I am drained.