Along for the Ride

The last few months have been a trying time for our family. We've had a myriad of events, mostly medical, that have caused alarm and concern with various members of our family. In January, my father began a series of tests to qualify for a double-lung transplant. He was diagnosed with scleroderma in 2007, and over the last few years, he has developed pulmonary arterial hypertension. As a result, he needs new lungs. We were initially surprised that the doctors wanted to go ahead and start testing and get him on the list, but I'm glad they started when they did. What we thought would be 1 week of testing became 2 1/2 months of ongoing tests. These tests culminated in a committee discussion of my dad's case today. After reviewing everything, the committee deferred the decision, asking my parents to meet with the lead transplant doctor before proceeding. The testing had revealed some additional risks associated with the transplant that my parents needed to weigh. The first conc...

I've been struggling with writing this entry for a while. I knew I wanted to write about it, but I wasn't quite sure how or when I'd be ready. I'm actually thinking that it might be sort of anti-climatic now. Kind of like that day my brother delivered the Girl Scout cookies to work. I literally thought about the box of Thin Mints under my desk all day long. By 7th period, I could practically taste them. I had waited for so long that I was anxious to taste just 1... but a serving size was 4, so I had to get all 4 (of course). The first bite, my heart was ready to sing! I was yearning for that annual treat of minty chocolate goodness coated in the thin coating of sublime bliss. But it tasted a little.... well.... bland. And dry... I thought, OK, this is just because I built it up in my head too much. The second cookie will bring me that moment of sheer joy. But it was cakey and got stuck in my teeth. Disappointing. I half-heartedly finished the other two cookies, closed t...

Yesterday I had the opportunity to meet with a new rheumatologist. Before I summarize the visit, I have to give props to the amazing dermatologist I met with who arranged our appointment. My father, having scleroderma, has been seeing a great dermatologist for a while. My mom saw her as well, and knowing that being on immuno-suppresive medications could cause latent issues (like skin cancers) to arise, I made an appointment for an annual skin check. During the visit, this dermatologist had a very candid conversation with me about finding good doctors. When I mentioned that I was on the lookout for a new rheumatologist who had more experience with Wegener's, she said she had just the guy. She met him for lunch the next day and called me two days later with an appointment time. I was delighted! Last week, my Thursday appointment with him was rescheduled to Wednesday. I happily adjusted my schedule and drove to downtown Dallas to meet with him. He spent over 3 hours talkin...