My lung allocation score is 92.9 (the highest possible score is 100), which means I’m very high on the list. Hopefully this means I’ll receive my next transplant soon. An interesting fact we learned about lung transplant listing is that unlike the other organs, wait time does not affect your score. Lung transplant scores are based purely on medical urgency and likelihood to survive post-transplant. I don’t want to wait, but I also feel badly for those who have been waiting a very long time. A friend we have made in the hospital has been waiting here at UCSF for 9 months. 😦
The past couple of days have been okay. My only complaint is that I have developed a new chest muscle ache. I must have pulled a muscle either sitting up or rolling to my side in bed. The nurses have been giving me hot and cold packs to alternate, which have been helping a lot.
I have realized that while my small room does not have a view, I have been getting much better care here on the Moffitt side of the 10th floor than I did on the Long side. There had been talk of switching me to a bigger room with a view of the golden gate bridge, but the charge nurse said the patient to nurse ratio was better on this side of the floor. In that case, I’m okay with staying where I am. Hopefully it won’t be for too much longer.
There’s this lady that Carol remembers from support group who had a lung transplant three years ago. She is back in the hospital too; she caught some kind of bacteria which traveled to her brain. All of this makes me feel that a move to southern California is in my near future. If I am going to face re-hospitalizations and complications, I can’t do it by myself.
Some good news is that my appetite is coming back. Yesterday I wanted a loaded baked potato, and managed to eat quite a bit of the one Carol brought me. I even had some peanut brittle as dessert. I’m being fed through the stomach tube 24 hours a day, and that, with my improved appetite, has given me enough energy to do a little bit of walking. Today, with the physical therapist, I walked from my bed to the curtain and back. I also stood for an additional thirty seconds. I am going to try to keep up my strength so that recovery from transplant will be as smooth as possible.