Several months ago, I posted that Q was three weeks out from her liver and kidney transplant at Emory University Hospital. It was a miraculous recovery, by all accounts. We had some ups and downs. Her liver function started decreasing and they were very concerned. They did a biopsy. They did ERCPs and added stents. They spoke about doing exploratory surgery and as a last-ditch effort, decided to try a med that isn’t usually helpful to livers, but had been for Q for some time pre her first and second transplants. It did improve things ever so slightly and has continued to do so.
Q is followed by the liver team at Emory and they’ve been terrific. From evaluation November 2021 to listing March 2022, to transplant July 22, 2022 (or July 21, 2022, depending on how you view the dates) for a liver kidney transplant. Her recovery has gone well… no more itching whatsoever, no external bile diversion and she looks and feels amazing. Her sleep is normal. She went from a 20-year-old young woman who got a liver kidney transplant when she was very ill to a thriving young woman at 21 years old. We are grateful to the donor family, who under certain tragedy and stress, chose to give strangers life. There are no words, only thanks in the actions in her life moving forward and using these donated organs for a well-lived life.
Our son G has been waiting a very long time for a new kidney. We’ve had the desire to give him a kidney by several people, but Emory lacked the infrastructure to handle the testing of potential donors and his transplant in a timely manner. We tried to move his care to Piedmont but the appointment came right at the time of Q’s transplant last July and I lacked the mental bandwidth to handle it. It proved to be challenging because in December, when I tried again to move his care, Piedmont denied the transfer, saying we were “too far along in the process with Emory.” I was devastated and regretted my decision to cancel last July. Back then, I thought… for sure by the end of December; he’ll be transplanted.
That was not to be. It’s a long story about two donors who made their way into the process and about a process that was really hard to navigate, no matter how completely committed the potential donors were. There was an escalation event that resulted in some movement. Maybe one day I’ll tell the whole story but for now, it’s too raw.
Tomorrow, February 22, 2023, G is supposed to get a kidney from a stranger in a three-way kidney swap. It is as a result of our donor agreeing to be put in the paired exchange program. She is donating to someone else on behalf of G and he will get one from someone doing the same. We are hopeful for him for the first time, in a very long time.
