Transplant Visit

My daughter had a check-in with the transplant surgeon today. We had quite a few concerns. Since her infusions started for proliferative transplant disorder, her weight and sugar readings have increased. Her kidney function numbers (GFR) have also been declining with the infusion treatments. This roller coaster ride is really frustrating, as when one thing improves, another thing goes wrong. At age 41, my daughter has been through a lot with the transplant of a liver due to MASH and infusion treatments for the lymphoproliferative disorder. She is strong and takes everything in stride, for the most part without much complaining. I do the worrying for all of us.

The surgeon did not want to give up on the kidney transplant for her. We are about two years away from that happening. She has to be in remission. Regular PET scans will be done. Also, he thinks that she needs to have someone donate a kidney if and when she makes it through the two-year mark, because it will definitely be quicker than being on the wait list. She has type O blood, so it would have to be someone with that type of blood, and mom and dad cannot donate due to age. He explained that donors of kidneys do fine with one kidney, and there is only a 0.03% of a problem occurring afterward. The kidney transplant is much easier than the liver transplant, he said. Right now, we just need to concentrate on getting better and making sure the disorder does not return.

I worry about what will happen if I am not around when all of this occurs in the future. I plan to be here, but you never know what may happen. She is on the autism spectrum and lives with us. She can maintain her life; however, she does need help with certain things that she does not understand. I’m just going to put this in the Lord’s hands and hope everything turns out ok. Her brother and sister-in-law live next door, so I know they would look in on her. I know her sister would help as well, even though she is a couple of hours away. In the meantime, I will just pray that she improves since we have finished the treatments. The only way we can go is up!

Later…