By Genevieve Coorey, BSN, MA(Ed.). Coorey is the quality assurance and program director at the National Kidney Foundation and was the lead author of “Barriers to Preemptive Kidney Transplantation,” published in the November issue of AJN.
Talk with any nursing colleague who cares for people with a chronic, complex disease and you will hear about the resilience and patience with which they accept—even triumph over—the effects of their illness.
Cheryl learned nine years ago that her kidneys were failing. “At one point, I was so weak from anemia and malnutrition I could barely lift a dinner plate. Walking through a grocery store was a struggle. I used a wheelchair briefly because my legs were so filled with fluid. My husband . . . had to carry me at times, because I was too weak to walk.”
A long-time school friend gave Cheryl one of his kidneys. She took up biking when her recovery allowed and the next summer she rode a 69-mile segment of a huge annual bike ride across Iowa; two years later she rode all 500 miles. Now Cheryl is a seven-time gold medal winner at three separate National Kidney Foundation U.S. Transplant Games events and a two-time bronze medal winner at the World Transplant Games. Extraordinary.
Every year, thousands die while waiting for an organ transplant. Yet the compassion and selflessness of others—complete strangers in fact—may offer hope for some. This is illustrated by Linda’s story:
“During summer 2009, I donated a kidney to a stranger. Though I long ago decided to be an organ donor after my death, I never considered the possibility of being a living donor. Then a conversation with my daughter-in-law (a nurse in the Transplant Institute of Georgetown University Hospital) made it clear to me that I could live a healthy life with just one kidney. I was happy enough to travel to D.C., ‘drop it off,’ and return to St. Louis, without knowing my recipient, and without any fanfare. Little did I know I would become a link in a first-ever 14-way transplant. The two most powerful elements of this exchange for me were the fact that many of the recipients in the exchange were poor and uninsured, and meeting the doctor who cares so deeply for them. . . . What my recipient did for me was to remind me of what is important in life, and the treasure of gratitude no matter what life brings. All I gave her was something I wasn’t even using!”
Most living donor kidney transplants come from a blood relative, a spouse, or a friend of the recipient. But not always. In some cases the kidney may come from a non-directed or altruistic donor—that is, from a person who wishes to donate a kidney to whoever is the most suitably matched recipient. Non-directed donations can help to make more organs available, and many transplant centers in the United States accept people for evaluation as a non directed donor.
But what happens if a willing donor and their potential recipient have incompatible blood types? It can prompt an exchange program. Paired exchange involves two living donors and two recipients. If the recipient from one pair is compatible with the donor from the other pair, and vice versa, the transplant center may arrange for two simultaneous transplants. This allows two transplant candidates to receive organs and two donors to give organs, even though the original recipient/donor pairs were unable to do so with each other. A Never Ending Altruistic Donor (NEAD) chain begins with one non-directed (altruistic) potential donor, like Linda. In this program, the non-directed donor gives to a person waiting for a transplant, and that recipient’s willing—but incompatible—donor gives to another person waiting, and so on. Each living donor in this system gives to another incompatible pair. In Linda’s case, this cascade effect occurred through a paired exchange program wherein a transplant was performed seven ways, in two hospitals, involving seven men and seven women from four states.
Thanks to people like Linda, non-directed donations and exchange programs are becoming more frequent. But far too many barriers still stand in the way of transplantation for far too many patients; however, the survival benefit, improved quality of life, and cost-effectiveness of transplantation over other treatments for kidney failure are well-recognized. In an article published in the November issue of AJN, we identified some of the educational, financial, and emotional barriers revealed by a survey of people with chronic kidney disease.
For the seven transplant recipients in Linda’s story the wait is over. But what about those who join and remain on the transplant waiting list, often for many years? The National Kidney Foundation has committed to End the Wait! for a kidney transplant through a comprehensive and collaborative call to action with major organizations in the kidney care and transplant communities. The goal is to put in place proven educational, financial, and medical practices that can overcome barriers.
The End the Wait! recommendations focus on four key areas, including:
1. Improving transplant outcomes and reducing the need for second transplants by:
• Covering the cost of needed immunosuppressive drugs for life
• Educating chronic kidney disease stage 4 patients about early transplantation and treatment options
• Implementing the new KDIGO (Kidney Disease: Improving Global Outcomes) Clinical Practice Guideline on the Care of the Kidney Transplant Recipient
2. Increasing deceased donation by:
• Covering all donation-related costs
• Recovering and utilizing organs from expanded criteria donors and from donors who have experienced cardiac death
3. Increasing living donation by:
• Ensuring all donation-related expenses are covered, including lost wages
• Offering donors state-of-the-art medical procedures, ensuring the quickest post-recovery time
• Expanding matching and paired donor programs throughout the country
4. Improving the system of donation and transplantation throughout the U.S. by:
• Eliminating regional variations in access to transplantation and follow-up care
• Eliminating racial disparities in donation, getting on the waiting list and receiving a transplant
For details, click End the Wait! or call the National Kidney Foundation at (800) 622-9010.
Information about the United States Transplant Games—an athletic competition for recipients of organ transplants that celebrates life among recipients, their families, and friends—can be found here.