Isn’t it amazing that we have performed home dialysis for the last 3 days now and we have almost got Carly down to her dry weight. A week in the hospital with daily dialysis in the Acute Unit was unable to do this, but neither of us can figure out why. I know it is probably because their protocol does not allow them to pull fluid from someone with low blood pressure; that is usually the problem. However, I know that she runs low most of the time and her doctor has approved pulling when her systolic pressure is in the 90’s. I just don’t freak out and keep checking her pressure when it gets low. I don’t stop pulling unless her pressure does not bounce back up after two or three checks.
On Saturday, we did finally have our Thanksgiving meal, thanks to John’s effort. While I was busy getting Carly’s dialysis done, John went into the kitchen and fixed the entire meal! I have never eaten a Thanksgiving meal that was totally prepared by a man, but I must say it was delicious. He is such a sweet and thoughtful man. He even left the kitchen basically clean!
I got to drive home to Tulsa on Sunday. I was so happy to see my own bed! The first thing I did was lay down and take a 2 hour nap. I don’t think I have talked much about my health or issues here, but while all this has been going on with Carly, I seem to have injured my right wrist. I had an arthroscopy and MRI done on the Wednesday before the holiday to see if the orthopedic doctor’s diagnosis is correct. He says I have somehow torn my TFCC (big words for padding in wrist) and he will fix it once he sees these results. In the meantime, I have a swollen right wrist that hurts 24 hours a day. Nothing really helps the pain, so I try to ignore it. In addition to this injury, I have had the mother of all colds for over a week now and I am really sick and tired of being sick and tired!
Carly is getting really depressed because she does not see any light at the end of this tunnel; Hell, she doesn’t even see the end of the tunnel. She is getting frightened that she is going to die before she can convince anyone to help her. I have no soothing words to tell her. She has every right to feel this way. She has every right to believe that this will go on indefinitely and she might die before she can get a transplant. I feel so helpless to help her. I keep trying to focus her on the here and now and have her enjoy her life now as much as she can. The problem with that is she is so sick it is difficult for her to enjoy much.
I am really afraid. All I can do is keep Carly moving in the right direction and try to keep her spirits up. I really am angry at the way this transplant program works. She is left hanging in the wind by the very people she expects to help her. It also doesn’t help that the holidays are upon us. I think I have my work cut out for me for the next few months.
If you are reading this post, please pray that my daughter gets her transplant very soon. Any and all prayers for her are appreciated.