After a week of no computer, I can finally get back to the blog! You never think about how much time you spend on your computer until it dies!
We went to Dallas this week for her appointment at Baylor Hospital. It was a very fast trip–drove down Wednesday, had appointments Thursday morning, drove home to OKC Thursday afternoon. We were both exhausted but pleased with the results from the visit. Carly met her new hepatologist since Dr. Asrani has moved to research. He did, however, come to the room to say hello while we were there. He actually gave Carly a big hug.
We were doing her dialysis on Friday around 5pm when her new doctor called her to tell her that her lab work came back with some changes and because of that her MELD score was being raised from 21 to 26.
Now, this is a big deal! Anything above 24 is basically at the top of the list! We were concerned at first but decided to simply be thankful if this gets her transplant done sooner.
Home dialysis is going well. We have worked out many of the bugs and know many of the codes for the alarms. Carly is doing well and says she feels better than when she only did dialysis 3 times a week.
I am getting more and more tired. With driving back and forth between Tulsa (my home) and OKC (Carly’s home) and frequent trips to Dallas Baylor, I am simply exhausted. I have come to realize that I have no life. I am a caregiver and nothing else. Carly is not happy with this state of affairs, even though we neither one have any control over the matter. Carly wants me to be able to stay home Friday evening through Tuesday morning each week. That was the original plan, but until we have someone to do her Sunday dialysis treatment that cannot happen.
I would love for this blog to return to the original premise of art, crafts, and fun things. It will do that eventually. Until transplant though, I fear it will mostly be filled with my experience with Carly and getting her transplant!