SALLY’S STORY – THE MIRACLE OF PAIRED KIDNEY DONATION
Sally M. (not her real name) was born with polycystic kidney disease (PKD), a condition that afflicts almost 600,000 people in the US. She was diagnosed with this dreadful disease when she was in her early 30’s. Just a few years ago, she had had her second child and she was busy being a mom and having a thriving small business that she ran with her husband, Chris.
Sally had known about PKD ever since she was a child. Her own father also had PKD, which caused him to stop working when he was in his 40’s as his kidneys had stopped working completely and he had to undergo dialysis three times a week to stay alive. Upon the insistence of his kidney doctor, he was put on the transplant waiting list since he did not have anybody who could donate a kidney to him. After waiting for about four years, Sally’s father received a deceased donor kidney and he went on to live on for many years without having to be on dialysis.
Sally’s own family physician had referred her to a nephrologist many years ago so that he could keep an eye on her kidney function. At some point, he warned her, her own kidneys were going to start to shut down and she was going to have to be on dialysis, just like her dad. Now in her early 40’s, Sally’s kidneys had begun to get larger because of the growing cysts, which meant that she was moving closer to being on dialysis and needed to be evaluated for a kidney transplant.
Chris could no longer see his wife’s medical condition decline in front of his very eyes. He went to Sally’s nephrologist to be evaluated for being a live kidney donor. Based on the initial blood tests, he was found to have a different blood group and was therefore not a match for Sally. The nephrologist suggested paired donation and referred them to the university medical center for this procedure.
Paired donation is a relatively recent concept as a treatment option for kidney failure. The first live donor kidney transplant was between a set of identical twins in Boston. Transplant between these two brothers meant that as they were genetically identical, the donated kidney would not have any rejection episodes in the new recipient. Chris could not be a donor to Sally because his kidney would be immediately rejected by Sally’s body as their blood groups were not identical. With the help of paired donation, the transplant center was able to link them up with Jane and Fred (not their real names) who also were in a similar situation. Based on extensive testing, Jane could donate her kidney to Sally and Chris could donate his kidney to Fred. In this way, both Sally and Fred could avoid going on dialysis and receive healthy, live donor kidneys and have a long productive lives ahead of them.
The two couples lived approximately forty miles from each other. Therefore, on the day of the transplants, Chris became a donor to Fred at his transplant center while Sally received a kidney from Jane at her own hospital. Both pairs did extremely well after their respective surgeries and continue to live healthy productive lives.
Paired donation has been able to save countless lives since it was first thought of in 1986. The first formal paired donation program was started in South Korea in 1991 and the first US paired donation was carried out at Rhode Island Hospital in 2000. After Johns Hopkins started the first US paired donation program in the US, many other similar programs have been started in different parts of the country. The National Kidney Registry carried out the longest chain of paired transplants in the country by having a 70 participant chain in 2014.
Today, both Sally and Jane are close friends, as are Chris and Fred. They serve as an inspiration to the power of collaboration and progressive scientific innovation to help combat the critical organ shortage in this country. More such pairs are needed to not only save lives but also millions of dollars that can serve to advance education and research to help end the agonizing wait for a transplant that thousands of people have to endure every year.