October 25, 2012
October 30, 2012
I know I haven't posted in over a month, and I'm sorry for that, but I guess I just needed to take a break for a little while. It's not always easy having to reflect on my health and realizing just how sick I am. I didn't have the energy mentally or physically to keep updating...I guess I don't need to be sorry for that.
I am out of the hospital. I got discharged November 7. After the first night (second video) I got sicker and was running 103 fevers, my O2 was running low and wouldn't go up, and my PFT's dropped a little bit, but I recovered and am doing better. My weight didn't go up at all, I actually lost a pound and I'm at 104 right now...siigghh. I lost my voice again after a couple days of being admitted. I also caught impetigo on my nose (ouch). I am currently doing home IV's and probably will be for about two more weeks.
My doctor brought up the big "T" word (transplant). I am in the process of transferring to the University of Michigan CF clinic, so once I switch over, we'll see what the next step will be. I'm sort of on the borderline of needing a transplant. My numbers are low, but they probably need to be just a few % lower to be qualified. I have oxygen at home so that helps me qualify as well. I don't know, I'm not really sure what I think about it. Some people say it's a good thing, and I am trying to see that too, but it's also not a good thing. It's not good that I am sick enough to be thinking about transplants and the possibility of needing one. It's not good that my numbers are so low that I become scared. The night that he brought up transplant I had actually sat in my bed and cried for about 2 hours.
It's not easy.
When I was feeling better.