It has been a few weeks since my second dry run. I wanted to blog about it sooner while the experience was still fresh, but well, it’s been a little rough since then. My family had gone to Baltimore for Thanksgiving. I elected not to go with them for a number of reasons. First, I get very anxious whenever I feel like I’m very far from the transplant center, even if I am within the allowed range. Traffic in Washington can be horrible. A traffic accident here or there can take what might have easily been an hour trip and turn it into several. Too much is riding on these new lungs to risk it. I also get anxious when I’m very far from home because my oxygen needs can be so unpredictable. If I cough a lot, I could burn through three or four tanks in an afternoon. If I don’t, one might be plenty. I’m always anxious about literally having enough air. The other reason was I get so tired easily these days, and I don’t like being around a lot of people. Talking for very long at this point makes
Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life