Searching for a Kidney Donor: ‘You Can Never Give Up’
Key takeaways:
Paul Savuto donated a kidney to his wife more than 20 years ago.
When that kidney began to fail, he launched a campaign to save her life.
The couple is still desperately searching for a new kidney donor.
More than 20 years ago, Paul Savuto donated one of his kidneys to his wife, Deb. And for more than two decades, that kidney did its job and the couple moved on, living happy and healthy lives with one kidney each.
But in 2022, Deb’s donated kidney started to fail. After exhausting potential donors from a list of family and friends, Paul launched the “1 Kidney 4 Deb” campaign on social media. Later, he bought 120 ads from the Massachusetts Bay Transportation Authority (MBTA) that were placed on trains and subway cars.
The bold orange posters featured a photo of the Savutos holding a candle representing “hope.” One ad asked, “Have YOU ever considered being a living kidney donor?” It included a QR code that sent users to the National Kidney Donor Organization and to the couple’s website.
“It’s like finding a needle in a haystack. It takes time,” says Paul, a 66-year-old patient advocate who lives in Lexington, Massachusetts. “Even if you have hundreds of people sign up to help, they may not qualify to donate, or they might not follow through.”
Looking for a kidney donor
The Savutos didn’t need to find a match for Deb, who’s also 66. They only needed someone who could donate, a so-called “altruistic” or non-directed living donor.
Finding a kidney donor for any of the 88,000 people on the national kidney donation waiting list would bump Deb up on the list through the National Kidney Registry’s Voucher Program.
A shortage of available kidneys is an ongoing concern. While about 100,000 Americans were waiting for a kidney transplant in 2020, only 22,817 received one that year.
The MBTA told Paul his ads would reach about 1 million people in the month he’d planned to display them. Instead, the ads stayed in place for more than 4 months, from July to November 2023. During that time, about 150 people visited 1kidney4Deb.com. Five people filled out a 12-page potential donor health questionnaire.
Of those five, three were ruled out right away. The fourth, a family friend, also wasn’t eligible.
But the fifth, a 40-something woman named Karen, who lived in nearby Somerville, Massachusetts, was an eligible donor. Karen was a stranger to the Savutos. On December 6, 2023, one of Karen’s kidneys was implanted in a recipient in New York. After the surgery, Paul visited her in the hospital, roses in hand.
“I said, “Karen, do you know who got your kidney?’ And she said, ‘I don’t really care. That kidney is for Deb,’” Paul recalls. “I got choked up. She’s remarkable.”
Yet Deb’s still waiting for a kidney. In late January 2024, Paul says he expected Deb would need to wait 10 to 12 weeks for a matched kidney. The standard wait time for a kidney is 3 to 5 years, but it can be even longer in some parts of the country.
What you should know if you want to donate a kidney
More people need to know the ins and outs of kidney donation, Paul says.
“Half of the people who respond typically know very little about what’s involved,” he says. “We need more education.”
Here are some key things people should know about organ donation.
Several tests help determine a match
A match refers to “biological compatibility,” according to the National Kidney Registry. Doctors perform three tests to determine who’s a match:
The first is blood type matching to consider which blood types are most compatible. There are four major blood types: A, B, AB, and O, each determined by the presence or absence of specific antigens on the surface of red blood cells.
The second is tissue typing, which looks at each person’s more than 100 antigens to determine compatibility for organ transplantation. Specifically, this process focuses on identifying the six antigens that are deemed most crucial for matching donors with recipients.
The third is kidney cross-match testing, a process where the blood of a potential kidney donor is mixed with the blood of the recipient to determine if the recipient's antibodies would react against the donor kidney.
Today’s transplants are managed effectively with anti-rejection medications. Better matches mean fewer medications and better outcomes.
What if you’re not an exact match?
A donor and recipient don’t have to align in every category. This was the case when Paul donated his kidney to Deb. His blood type is O, the universal donor. Of the six antigens, only one matched.
“You don’t have to be a perfect match to donate,” Paul says.
You can be a living donor
Donated kidneys can come from deceased and living donors. But those taken from a living person typically last longer — 15 to 20 years versus 10 to 15 years — according to the American Kidney Fund.
The procedure involves surgery
Potential donors should also know that yes, the procedure involves surgery. After Paul had his kidney removed via laparoscopic surgery in 2002, he felt well enough to return to work after a week, he says. A competitive swimmer, he competed in a triathlon 4 months later.
“I tell my competitors that I have an advantage because I had one less organ slowing me down,” he says.
Chronic kidney disease can lead to the need for a transplant
Chronic kidney disease, which happens when your kidneys are damaged, is sometimes called a “silent killer” because people live for years with the disease before they show symptoms. Kidney disease can stem from other conditions, including diabetes and high blood pressure.
Deb has a rare genetic condition called Alport syndrome, which manifests in kidney failure and eye and ear deterioration.
As Deb’s kidney function began to deteriorate, Paul launched into action with transit ads, T-shirts, and car magnets. During swimming competitions, he’d wear a wetsuit promoting 1kidney4Deb and hand out small bottles of sunscreen labeled with information about the campaign.
“The key element is persistence,” Paul says. “To find an eligible kidney donor takes time and lots of resources. Most of all, you can never give up.”
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