“This experience has been the most challenging and rewarding of my life so far, and I would do it again a hundred times over.”
"Ms. Donadieu, we are very sorry, but there is nothing that can be done to help your daughter. You are going to have to watch her disease progress."
These were the words spoken to me by a pediatric nephrologist, holding forced and unpleasant eye contact, as we sat in a windowless exam room at a regional specialty hospital for children.
None of the words that followed were discernable.
This is what would eventually lead me to donate a kidney, although I didn't know it yet. I certainly didn't know that I would willingly, eagerly even, donating it to a complete stranger even though it was my 17-year-old daughter, with no history of any kidney disease, who was on the verge of end-stage status.
November 2019
Now seeking care for my daughter at The Children's Hospital of Philadelphia (CHOP), the conversation had evolved.
"Ms. Donadieu, the entire department met this afternoon to confer on strategies we can try to slow the progression of your daughter's disease. We want to move now to see if we can arrest the progression, maybe even push it back and help her regain kidney function."
These were the words spoken to me by the Dr. Michelle Denburg, a pediatric nephrologist at CHOP. They had already expedited an order for specialty medication, which was delivered to our home at 5:30 the next morning via courier. It was Thanksgiving Day.
March 2020
"Ms. Donadieu, great news! Ruthie's kidney function is improving, and we are cautiously optimistic it can continue. We are going to put Ruthie on the United Network of Organ Sharing [UNOS] transplant list because of her diagnosis, but she will be listed as inactive. She has regained sufficient kidney function to avoid the need for an immediate transplant."
These were the words spoken to me by the pediatric nephrology transplant team at CHOP, as we sat in a conference room bathed in natural light streaming in from the wall of floor-to-ceiling windows. The words that followed were amplified by a wave of gratitude and a depth of joy for which there are no words to describe. This is the day I learned it might be possible that my baby may never need my kidney transplanted to her, because she was getting better.
It was also on this day, during a series of nearly a dozen back-to-back examinations, evaluations, tests, and information and counseling sessions required for the UNOS listing, that I decided to donate a kidney ASAP, to a complete stranger and to my daughter at the same time.
It was on this day that I learned about the National Kidney Registry (NKR) and the amazing work they do. The mission of the NKR is to save and improve the lives of people facing kidney failure by increasing the quality, speed and number of living-donor transplants while protecting all living kidney donors. Since 2007, the NKR has facilitated over 4,500 living-donor transplants through paired exchange and advanced donation programs.
Who did I do it for? The honest answer is that I don't know. Through the NKR advanced donation voucher program, I was able to donate my spare kidney to someone whose life depended on it today, and in return a voucher is issued by the NKR in my daughter's name that guarantees her a living-donor organ should she ever need one.
But why would I donate a kidney knowing that my daughter may never need it? I want the peace of mind. I want the relief of knowing that no matter what might happen to me or my health in this crazy COVID world, I have protected Ruthie with a coupon for a kidney. Literally with a kidney coupon! No way am I going to sit on a perfectly viable organ that could save someone's life and give me that peace of mind.
October 2020
"Ms. Donadieu, your kidney was successfully transplanted and is working beautifully for the recipient."
These were the words spoken to me by the Surgical Director of the Living Donor Kidney Transplant Program at the Penn Transplant Institute in Philadelphia. The words were somewhat muffled as I emerged from the deep sleep of general anesthesia at the Hospital of the University of Pennsylvania. It was October 14, exactly one year after that awful prognosis.
Epilogue
This experience has been the most challenging and rewarding of my life so far, and I would do it again a hundred times over. Because in the end, somebody got a piece of me, and I got peace of mind. For more information on the National Kidney Registry, visit kidneyregistry.org.