A good Samaritan who donated his kidney to a stranger helped create the longest chain of kidney transplants ever constructed, linking 30 people who were willing to give up an organ with 30 who might have died without one.
RIVERSIDE, Calif. —
Rick Ruzzamenti admits to being impulsive. He traded his Catholicism for Buddhism in a revelatory flash. He married a Vietnamese woman he had only just met. And then a year ago, he decided in an instant to donate his left kidney to a stranger.
In February 2011, the desk clerk at Ruzzamenti’s yoga studio told him she had recently donated a kidney to an ailing friend. The story so captivated Ruzzamenti that two days later he called Riverside Community Hospital to ask how he might do the same thing.
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Halfway across the country, in Joliet, Ill., Donald Terry Jr. needed a kidney. Since diagnosed with diabetes-related renal disease in his mid-40s, he had endured the burning and bloating and dismal tedium of dialysis for nearly a year. With no one in his family willing or able to give him a kidney, his doctors warned that it might take five years to crawl up the waiting list for an organ.
“It was like being sentenced to prison,” Terry recalled. As a dawn chill broke over Chicago on Dec. 20, Terry received a plump pink kidney. He did not get the transplant from Ruzzamenti, at least not directly, but the two men will forever share a connection: They were the first and last patients in the longest chain of kidney transplants ever constructed, linking 30 people who were willing to give up an organ with 30 who might have died without one.
What made the domino chain of 60 operations possible was the willingness of Ruzzamenti to give the initial kidney, expecting nothing in return. Its momentum was then fueled by a mix of selflessness and self-interest among donors who gave a kidney to a stranger after learning they could not donate to a loved one because of incompatible blood types or antibodies.
Their loved ones, in turn, were offered compatible kidneys as part of the exchange.
Chain 124, as it was labeled by the nonprofit National Kidney Registry, required lock-step coordination over four months among 17 hospitals in 11 states. It was born of innovations in computer matching, surgical technique and organ shipping, as well as the determination of a Long Island, N.Y., businessman named Garet Hil, who was inspired by his own daughter’s illness to supercharge the notion of “paying it forward.”
Dr. Robert Montgomery, a pioneering transplant surgeon at Johns Hopkins Hospital, which was not involved in the chain, called it a “momentous feat” that demonstrated the potential for kidney exchanges to transform the field.
The chain began with an algorithm and an altruist. Over the months it fractured time and again, suspending the fates of those down the line until Hil could repair the breach. Eventually, he succeeded in finding needle-in-a-haystack matches for patients whose antibodies would have caused them to reject organs from most donors.
Until now, few of the donors and recipients have known one another’s names. But 59 of the 60 participants consented to be identified by The New York Times and to tell their stories.
Despite an intensely bitter breakup, a Michigan man agreed to donate a kidney for his former girlfriend for the sake of their 2-year-old daughter.
Children donated for parents, husbands for wives, sisters for brothers. A 26-year-old student from Texas gave a kidney for a 44-year-old uncle in California he rarely saw. In San Francisco, a 62-year-old survivor of Stage 4 Hodgkin lymphoma donated for her son-in-law.
On Aug. 15, Ruzzamenti’s kidney flew east on a Continental Airlines red-eye from Los Angeles to Newark, N.J., and was rushed to Saint Barnabas Medical Center in Livingston, N.J. There it was stitched into the abdomen of a 66-year-old man.
The man’s niece, a 34-year-old nurse, had wanted to give him her kidney, but her Type A blood clashed with his Type O. So in exchange for Ruzzamenti’s gift, she agreed to have her kidney shipped to Madison, Wis., for Brooke Kitzman’s transplant. It was Kitzman’s former boyfriend, David Madosh, who agreed to donate a kidney on her behalf despite their acrimonious split.
Madosh’s kidney flew to Pittsburgh for Janna Daniels, a clerical supervisor, who got her transplant. And her husband, Shaun, a mechanic, sent his kidney to Mustafa Parks, a young father of two in San Diego.
On and on the chain extended, with kidneys flying from coast to coast, iced down in cardboard boxes equipped with GPS devices and stowed on commercial aircraft.
In a system built on trust, one leap of faith followed another. The burdens of scheduling operations all across the country — so donors would not have to travel — meant that operations were not always simultaneous, or even sequential.
It is considered a quirk of evolution that humans have two kidneys when they need only one to filter waste and remove excess fluid from the body. Yet when kidneys fail, whether from diabetes or high blood pressure or genetic disorders, they tend to fail in tandem.
Only half of dialysis patients survive more than three years.
With the demand for kidneys rising faster than the number of donors, the waits have grown longer. While about 90,000 people are lined up for kidneys, fewer than 17,000 receive one each year, and about 4,500 die waiting, according to the United Network for Organ Sharing, which maintains the wait list for the government.
Only a third of transplanted kidneys come from living donors, but they are coveted because they typically last longer than cadaver kidneys. Although other living tissue can be transplanted, kidneys are uniquely suited because donors have a spare and the operations are almost always successful.
A reason there are not more live kidney donations, however, is that about a third of transplant candidates with a willing donor find that they are immunologically incompatible.
Using a blood-filtering technique known as plasmapheresis, doctors can now lower the odds that a recipient will reject an incompatible kidney. But the procedures are taxing and expensive.
Domino chains, first attempted in 2005 at Johns Hopkins, seek to increase the number of people who can be helped by living donors. In 2010, chains and other forms of paired exchanges resulted in 429 transplants. Computer models suggest that an additional 2,000 to 4,000 transplants could be achieved each year if there were a nationwide pool of all eligible donors and recipients.
Garet Hil and his wife, Jan, may never fully recover from the snowy night in February 2007 when they took their 10-year-old daughter in with flu symptoms and emerged with a shocking diagnosis of nephrophthisis, a genetic kidney-wasting disease. They could not imagine sacrificing her youth to dialysis.
Garet and Jan Hil and six other family members volunteered but were ruled out. Garet Hil and his daughter joined several of the registries that had started to arrange kidney exchanges, but the pools were small and they never found a match. Fortunately, one of Hil’s nephews then was tested and was able to donate.
After the successful transplant, Hil, a veteran business executive, could not shake his frustration that a more effective registry for paired kidney donation did not exist.
By the end of 2007, the Hils had formed the National Kidney Registry. The couple invested about $300,000 to start it, and Garet Hil, now 49, ran the registry without a salary.
“The goal was very simple: get everybody transplanted in under six months if you had a living donor,” he said.
The transplant world initially regarded him as an interloper. But he has now persuaded 58 of the country’s 236 kidney-transplant centers, including many of the largest, to feed his database with information about pairs of transplant candidates and their incompatible donors.
Last year, he arranged 175 transplants this way, including the 30 in Chain 124, more than any other registry. On average, patients received transplants about a year after being listed.
The same year that Hil’s daughter got sick, Congress amended the National Organ Transplant Act to clarify that paired exchanges do not violate federal laws against selling organs. The blessing from Washington broke down resistance in many hospitals just as the National Kidney Registry was opening for business.
Although the first live kidney was transplanted in 1954 in Boston, three decades passed before a surgeon named Felix Rapaport first theorized about kidney swaps in a 1986 journal article. Simple swaps among two pairs, with the operations performed at the same hospital on the same day, quickly evolved into complex exchanges among three pairs and then four and then six.
Then in 2007, an Ohio transplant surgeon, Dr. Michael Rees, had a forehead-slapping insight. If an exchange began with a good Samaritan who donated to a stranger, and if the operations did not have to be simultaneous, a chain could theoretically keep growing, limited only by the pool of available donors and recipients.
Hil seized on the idea and set out to build an algorithm that would enable more transplants. Nowadays, his pool typically consists of 200 to 350 donor-recipient pairs. That is enough to generate roughly a googol — 10 to the 100th power — of possible chains of up to 20 transplants if all of the pairs are compatible, said Rich Marta, the registry’s senior software designer.
There are several registries like Hil’s, each with a distinct approach. Largely unregulated by government, they invite sensitive questions about oversight and ethics, including how kidneys are allocated. A number of medical societies are convening in March to seek consensus on that and other issues related to paired exchanges.
Depending on the makeup of his registry at any moment, Hil likes to stretch his chains as long as reasonable, then end them if a donor is difficult to match or if one chain is draining others of potential transplants.
He does so by arranging for the final kidney to go to a fortunate transplant candidate like Terry who does not have a willing donor.
The initial link
Until recently, hospitals regularly turned away good Samaritan donors on the working assumption that they were unstable. That has changed somewhat with experience. But when Rick Ruzzamenti, 44, showed up at Riverside Community Hospital asking to give a kidney to anyone in need, doctors and social workers did not know what to make of him.
As the hospital’s transplant coordinator, Shannon White, pressed him about his motivations and expectations, he explained his decision seemed rather obvious.
“People think it’s so odd that I’m donating a kidney,” Ruzzamenti told her. “I think it’s so odd that they think it’s so odd.”
He said he was in a position to donate only because the economy had dried up so much of his work. He was essentially unemployed and could take time off to recuperate. The 30 kidney recipients, he observed dryly, could “all thank the recession.”
The chain held some love stories.
Gregory Person and Zenovia Duke, both now 38, had been junior-high prom dates in 1987 in Queens, N.Y. They lost touch then reconnected on Facebook after each had divorced. But he lived in Queens and she near Albany, so the relationship never got serious.
Not long after they reconnected, Person’s half-sister died of kidney failure and he pledged to help someone else beat the disease if ever given the chance. Then Duke learned she needed a transplant.
On Aug. 31, Duke received a kidney from a woman in California and Person sent his to Ohio. As they recuperated at New York-Presbyterian, Person found himself regularly hobbling down to her room. Once they were both back on their feet, they started dating more regularly.
“I’ve never had any person in my life actually do what they say they’re going to do,” Duke said, “especially men. It spoke volumes that he was a man of his word.”
It was a different kind of devotion that led David Madosh, 47, to donate a kidney for Brooke Kitzman, 30.
Their four-year relationship, which had produced a 2-year-old daughter, soured just as he was getting tested as a potential donor. When Kitzman later matched to become part of the chain, she put the odds at no better than 50-50 that Madosh would still donate.
But Madosh, who lost his mother when he was 5, did not want his daughter, Elsie, to lose hers.
On Dec. 19, Chain 124 hurtled toward its conclusion with a final flurry of procedures in Los Angeles. Between dawn and dusk, three kidneys were removed and three were transplanted in neighboring operating rooms. One flew in from San Francisco. The last took off for O’Hare.
At the end of the cluster were Keith Zimmerman, 53, a bearish, good-humored man, and his older sister, Sherry Gluchowski, 59. A courier drove Sherry Gluchowski’s kidney to the Los Angeles airport. Cynthia Goff, who had volunteered to accompany the kidney to Chicago, rolled the box into the terminal strapped atop her carry-on with a bungee cord.
After security agents checked the box with a desktop scanner, she was escorted onto an overnight flight to Chicago. Airplanes carrying donor organs are granted special status, allowing them to move to the front of takeoff lines and ahead of air traffic.
By the time Gluchowski’s kidney made it to Loyola University Medical Center and was transplanted into Terry, it had been cold for almost 12 hours. Early studies have found no evidence that shipping live kidneys such distances affects their immediate function.
Chain 124 ended at Loyola because Hil had arranged the final kidney to go to a hospital that had produced a good Samaritan donor to start a chain in the past, thus closing a loop.
Dr. John Milner, a transplant surgeon at Loyola, said he then selected Terry to receive the kidney because he was the best immunological match on the hospital’s wait list.
But as it sank in that his would be the last of 30 interconnected transplants, Terry began to feel guilty that he would be ending the chain.
“Is it going to continue?” he asked Milner. “I don’t want to be the reason to stop anything.”
“No, no, no,” the doctor reassured him. “This chain ends, but another one begins.”