By John Sullivan, transplant recipient father
In December 2012, our daughter Rachel fell ill. After she exhibited flu-like symptoms for a few weeks without getting better, my wife and I decided it was time to go to the hospital. Very quickly, our world as we knew it would change.
On December 18, 2012 our healthy, energetic, twelve-year old girl was diagnosed with end-stage renal disease – complete kidney failure. We were told that she would need a kidney transplant to survive. We were in shock
Being from a large family (Rachel is the youngest of six children), we assumed one of us would be a candidate for living kidney donation, but unfortunately that was not the case. Transfusions she had in the hospital caused a compatibility problem between her and about 80 percent of the US population. This severely limited the pool of people eligible to donate a kidney to Rachel, and ruled out everyone in our family.
For five months Rachel was on peritoneal dialysis at night while we researched other ways to find a living kidney donor. She was hooked to the machine ten hours a day, seven days a week.
We found a program through The Ohio State University Wexner Medical Center called the Paired Kidney Exchange. People come to the program in pairs – one a willing donor (willing but incompatible with their loved one) and the person in need of a kidney. My wife Kelly entered the program with Rachel.
On May 7, 2013, we got a call telling us they had a match of seven donors and seven recipients. Surgery was set for a near-simultaneous 14-person transplant surgery on June 12. We were all very excited, but the excitement didn’t last long. The next day, May 8, we got a call from the kidney team at Nationwide Children’s Hospital. They didn’t like the kidney slated for Rachel and encouraged us to back out. They went on to say we should expect a 2-3 year wait on the national transplant list. We prayed for patience – we wanted the best possible kidney for Rachel.
Amazingly, we received The Call at 4:00 in the morning the very next day, May 9, 2013! We rustled Rachel out of bed and headed to Nationwide. The scene was hectic and nerve rattling. Everyone was moving fast to get Rachel into surgery as soon as possible.
While Rachel was being prepped for surgery, we received additional details about the kidney she was receiving – it was from a young man who had passed away from a car or motorcycle accident. My wife and I were floored and deeply saddened – we had always assumed we would have a living donor. People were calling and coming to the hospital to celebrate Rachel getting a kidney. All I could think about was the donor family. More than two years have passed and it’s impossible for me to think about Rachel’s kidney without thinking of the donor family.
Rachel came through the surgery amazingly well. As soon as she received her new kidney, she immediately went off her dialysis diet and virtually all of her medicines! The doctors marveled at how well the kidney matched Rachel.
Sadly, on April 3, 2015, Rachel was diagnosed with Lymphoma. The team at Nationwide Children’s believes this was the result of too much immune system suppression. For reasons neither we nor the doctors understand, there is a remarkable and highly unusual degree of compatibility between Rachel and her donor’s kidney. This results in her not needing as much anti-rejection medicine. This is a great blessing as it will help her to be more healthy long term.
The type of cancer Rachel had is very aggressive, and the treatments were very aggressive as well. Children with kidney transplants and Lymphoma are exceedingly rare, so protocols for killing the cancer while protecting the kidney are not well developed. Thankfully Rachel finished her last round of chemo on July 13 and her kidney did GREAT throughout the four rounds of intensive chemotherapy!
Rachel is now in her sophomore year of high school and doing great. She is playing volleyball and her hair is growing back after her last round of chemotherapy. She is a precious soul to us, as I’m sure her donor was to his parents.
We are forever thankful to our donor and his family for their thoughtfulness to choose to be an organ donor. We will never forget it, nor will we take it for granted. We often talk about the fact that Rachel needs to take good care of her kidney to honor the young man that saved her life.