When it comes to finding a living donor, many PKD patients face the same difficult question: how do you ask someone for a kidney? From friends and family to Facebook pages and t-shirts, PKD patients in need of transplants are constantly and creatively in search of the gift of life. We recently had a story come in from Lisa Emmott, whose husband experienced an outpouring of support and potential donors when he opened up about needing a transplant:
My husband, Neil, has PKD born from a spontaneous mutation. His parents showed no signs of the disease prior to their passing in their 60s and 70s, and Neil’s siblings don’t have PKD. Thankfully, Neil was able to avoid going on dialysis before having a successful kidney transplant in late 2017. Our young daughters and I are filled with gratitude, but it wasn’t easy getting there. After an exhaustive 18-month process, Neil received his kidney transplant from a living donor by way of a paired kidney exchange in September 2017 at Johns Hopkins Hospital in Baltimore, Md.
To elaborate, a “paired kidney exchange” is one of the greatest medical milestones in the transplant world. This type of living kidney donation is also known as a “kidney swap” and occurs when someone who has been approved to donate a kidney is not the best match for their preferred recipient, so they exchange kidneys with another “mismatched” donor/recipient pair. The paired kidney exchange program allows a recipient to receive a better-matched kidney and, in turn, helps other individuals who are also waiting for a matched living donor. For Neil’s specific case, donors and recipients were matched and had surgery all over the country at various transplant centers, with kidneys being flown to and from California, Maryland and Massachusetts to complete the chain swap.
Asking for a kidney was unchartered territory for us, and my husband is extremely private. Once I convinced him to break free from being a hostage to privacy, though, we were floored by the goodwill that came our way. An abundance of potential donors, ranging from close friends to total strangers on four continents, enrolled at his transplant center to donate a kidney to him. One very private man needed a kidney and didn’t want to ask a single soul, but because Neil opened up to going public, eight people have now received new kidneys thanks to the paired exchange program. If you also consider those waiting for a kidney on the deceased donor list, there are also now eight people who will “move up” on the list and receive a new kidney sooner.
Neil’s “mismatched” paired exchange partner ended up being Britani, a very dear friend of mine. We work together at a school in Florida, where our kids attend together, so our families know each other well. When she found out that Neil needed a kidney and that I had been denied to donate due to thick beading of my renal arteries (indicative of fibromuscular dysplasia), she secretly started going through the testing process. After a record-breaking eight weeks, Britani was approved to donate as part of the paired exchange. Neil and Britani both experienced textbook-perfect recoveries, and they continue to do well post-transplant.
Another friend of ours, Allison, had also wanted to donate in a paired exchange for Neil. She was approved to donate, but her approval process took longer than Britani’s. I met Allison because she was our younger daughter’s teacher, yet I never anticipated that I would also be her “student” in so many soul-fulfilling ways. After Neil was successfully transplanted, Allison proceeded with an altruistic kidney donation through a four-way chain exchange in November 2017. While her kidney was flown to a matched recipient in California, she ultimately did this to benefit her paired exchange partner: an anonymous child on the waitlist at Johns Hopkins. I am still amazed by her selfless act.
My mission now is to help other PKD patients who are waiting for a kidney find smiles and success just like we did. I will never be able to donate a kidney, but I will fervently donate my passion and my voice to raising awareness about PKD and living kidney donation. It takes a huge leap of faith to step outside your comfort zone and ask the world for a kidney, but the journey is worth the jump.
To learn more about living donation, visit our website.
Photo credit: Alison Frank Photography