It has been a week since my transplant appointment, and I’m just now getting around to blogging about it. I have a ton to do, but am making the time to blog today. Grin. All and all the appointment went well. I did better distance wise on my six-minute walk, but needed 10 liters of oxygen to do it. Even then I spent most of the walk saturating in the 80s. (They stop the walk if you go below 80 now, which I did last time on eight liters.) In practical life, this means I have to make myself walk slower, or crank up the oxygen to 15 liters, which means the tank is gone in minutes. It also means I’m hugely grateful for the wheel chair I have now. I still try to walk Finley around our block, and the park (about a half mile) several times a day. The route is fairly flat. I really can’t do hills anymore. Usually after about a mile I’m getting tired. I can do more, probably another mile more, but the tradeoff is that I won’t have the energy to do much else for several hours. If all I had to do...
Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life