But during 2016, 4,830 died on the kidney list while waiting and 4,411 others became too sick to undergo a transplant. “We are losing the game,” says Dr. Satish Nadig, surgical director of Pediatric and Living Donor Transplantation at the Medical University of South Carolina (MUSC).
But it doesn’t have to be this way if more people become live donors, Nadig says.
Finding a Live Kidney Donor
We all have two kidneys, including one to spare. If you can find a friend, family member or colleague to donate a kidney, you will be far better off than going on the UNOS list. Not only will you avoid the wait and deteriorating health, your outcome will be better. Live organs are of higher quality and can function immediately after transplanted.
The survival rate for kidney transplant surgery from a live donor is over 95 percent with a less than 1 percent risk of complications. What’s more, Nadig says, “A kidney from a live donor will last 20 years on average, versus 10 to 15 years from a deceased donor.”
The risk also is low for the donor. With noninvasive surgery, donors are usually out of the hospital in one or two days after the transplant.
“It’s not an easy surgery, but having a C-section was more painful than the kidney donation,” says Julie Allen, of Mt. Pleasant, S.C., who donated a kidney in 2008 to her husband, then 53. She said she was back at work in two weeks after the operation at MUSC. “I’ve never felt any health effects from it.” Ten years later, her husband — who didn’t want her to do it — thanks her every day.
So why don’t more people needing a kidney seek a live donor? In 2017, only 29 percent of kidney transplants used live donors. Allen became a founding member of the Living Donor Institute at MUSC to boost that statistic.
If More People Knew the Facts
Myths and lack of knowledge make many reluctant to seek a live donor or to be one. “People don’t think they can live a normal life after donating a kidney,” Nadig says. The reality is that living with one kidney does not compromise a donor’s health or life expectancy.
“If I thought this was going to change someone’s life in a negative way, I wouldn’t let them do that,” says Billy Gillispie, 58, a basketball coach at Ranger College, a community college in Ranger, Texas who received a live kidney donation earlier this year.
Kay Kosberg, a registered nurse and the living donor nurse coordinator at the Mayo Clinic Transplant Center, says the most common misunderstanding she encounters is that living donors must be blood relations. Not true. Your neighbor or bridge partner could be a match.
Another myth is that the donor has to be young, says Dr. Charles Rosen, transplant surgeon and director of the Mayo Clinic Transplant Center. While a younger organ is optimal, a healthy 70-something can make a live kidney donation that will help a loved one.
Transplant centers perform a comprehensive evaluation on prospective donors and educate them about the procedure. If the transplant team determines it’s too risky for someone, or that the person isn’t completely on board, the donation is declined.
If you find a living donor who has an incompatible blood type, you can still make it work through a “kidney pairing.” This is a “pay-it-forward” chain managed by the National Kidney Registry with hospitals around the country. The donor you recruited can help someone else who is a match; in turn, you receive a kidney from another participant in the program who is in the same situation.
Initiating the Ask
Nadig advises his patients to find a “champion” to be their spokesperson when seeking a donor. “Let this person tell your story. It’s a lot easier for someone else to do this on your behalf,” he says.
Gillispie wasn’t searching for a donor when he told a friend that his kidneys were failing. That friend happened to be a reporter for The Dallas Morning News who published a story about his situation. Ericka Downey, a young mother from Oklahoma, read the piece and became his donor after the Mayo Clinic determined they were a good match.
Donors don’t have to contact their recipients or even reveal their identities, but Downey texted Gillispie and they had an emotional meeting before the surgery. “We’ll have a relationship for the rest of our lives,” Gillispie says. “She is as close as a family member.”
Many resources are available to help people learn more about live donation. UNOS provides guidance on initiating conversations, emails and letters to find a donor, as does the Big Ask, Big Give program of the National Kidney Foundation.
Some people have found donors by reaching out through an employee newsletter, making a presentation to a civic group or spreading the word at their place of worship. Others find that Facebook can be helpful if used carefully.
The organ recipient’s insurance typically covers the medical expenses of the donor, but not travel, lodging or lost work time. Donors who feel they can’t afford additional costs can contact the nonprofit National Living Donor Assistance Center for possible reimbursement.
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