I realized this past weekend that it has been a little more than two years since I started using oxygen. Wow! The realization makes me anxious. It would be typical for an HPSer to be doing much worse than I am now doing. Sometimes I wonder if I’m doing as well as I think I am. Then, I start to feel panicked because if I’m not, I’m running out of time to get listed. The month I went on oxygen I had three other HPS friends who had to start using oxygen about the same time. Two of them have passed, and one had a lung transplant. It really does make one feel as though one is on borrowed time. The last few days I’ve noticed myself more breathless as I walk around my apartment – something I can usually do for two to three minutes on room air. In an apartment as tiny as this one, that’s plenty of time to put away laundry or go to the bathroom without wearing oxygen. In the apartment it isn’t so much that I need more oxygen – I just seem to need it sooner. When I have one of my coughing fits I
Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life