I can’t believe it’s been five months since I’ve updated and a lot has gone on with our transplant life.
Our daughter was on dialysis beginning February 18th, 2022. She was listed for a liver/kidney transplant on March 8, 2022. There were a lot of starts and stops with dialysis and her fistula access, but finally at the end of April things settled down. We went to a DaVita dialysis clinic and then moved to another one close to home two weeks later. We had to fight hard over a few weeks to get them to agree to the law by allowing a caregiver to be within Q, and not even for the entire treatment. I just wanted to help her get on the machine and go… and we had weeks of them breaking the ADA law. I explained to the admin of DaVita the best way I could, that everyone deserves the same level of care as they get treatment. Whatever they need to provide for that to happen, has to be given. It doesn’t matter if there is a pandemic, or a small building, or lack of privacy between patients. Every patient who needs a caregiver for help, deserves and better yet, the law protects it.
Things settled down and we were going through the motions. Every Monday we got her labwork to provide to the transplant team for them to provide for listing an updated MELD score (model for end-stage liver disease). What began at a MELD score of 23 in December mostly fluctuated around 26-29 for the coming weeks. We had one time when the score was 32 (beginning May), which warranted a call from our liver doctor to say it could come at any time.
It’s interesting that back in December the first surgeon and liver doctor we talked to made us think she would need to be around a 33+ MELD score to get “the call.” We planned for months of waiting, of dialysis to keep her alive. We kept our expectations low… and we hoped she would be transplanted by the end of 2022. On July 21, 2022, we go THE call. Much to our surprise Q had a transplant in the middle of the night with a transplant day of July 22, 2022.
She is recovering well, even though the kidney needs extra time to “wake up.” She’s had two dialysis treatments since the transplant to help remove toxins and fluids because the function isn’t where it needs to be, but we are assured by several doctors here that this happens and to be patient.
We are so grateful to our donor family for choosing to donate life. We do not know details other than the organs being “perfect” for our girl.
