The INSIDER Summary:
• Hundreds of Americans are volunteering to donate kidneys to complete strangers.
• They are saving the lives of people who desperately need transplants.
• INSIDER asked six kidney donors why they did it. Most said that it wasn’t a big deal.
Zully Broussard was about to donate a kidney to a total stranger — and she could hardly contain her excitement.
“I couldn’t wait. It was kind of like you’re a kid and you’re waiting to go to Disneyland — that type of excitement,” Broussard, 57, of California, told INSIDER. “You know that this could possibly change someone’s life.”
But Broussard didn’t change just one life that day: She changed six. Thanks to an innovative swapping system that’s revolutionising kidney transplants in the US, Broussard’s single act of kindness set off a chain reaction that resulted in six successful transplants.
She might be the only donor to compare her pre-surgery excitement to waiting for Disneyland, but she’s certainly not alone in her actions: Broussard is one of about 1,700 Americans who, since 2002, have voluntarily given up a kidney to anyone in the country who might need it. They’re a group of people known as non-directed — or altruistic — donors.
In years past, the New York Times reports, willing altruistic donors were often turned away because hospitals assumed that they were mentally unwell. And, admittedly, it can be hard to understand why a person would sacrifice an internal organ for someone they may never meet.
So INSIDER interviewed six of these donors — whose generosity ultimately helped 140 people get kidneys they desperately needed — and found out what it takes to go under the knife for a stranger.
Every year, 4,500 Americans die waiting for a kidney transplant.
But that’s not always due to a lack of willing donors.
In fact, many patients in need of a kidney have family members or friends willing to donate. The problem is that you can’t accept a kidney from just anybody: Donors and recipients need to go through a series of tests (including blood typing, tissue typing, and serum cross-match) to determine whether they’re a good match and whether the transplant will be successful. (You don’t have to find a “perfect” match in order to get a transplant, however: There are a lot of factors that go into calculating compatibility, and many recipients do just fine with less-than-perfect matches.)
So what happens when you’ve got a willing donor, but he or she isn’t an acceptable match? That’s where kidney transplant chains come in.
These chains allow willing donors to give kidneys to anyone who’s a good match — even if that person is a stranger who lives hundreds of miles away.
Hospitals and transplant centres (often with the help of donor databases like the National Kidney Registry) can link up several non-matching pairs of patients and willing donors, then shuffle around the available kidneys so that all the recipients end up with the organ that’s the best fit for them, regardless of their relationship with the donor.
It’s new to the medical world: Simple kidney swaps between two pairs of unrelated people happened in the ’90s, but the first transplant chain — an idea credited to University of Toledo’s Dr. Michael A. Rees — wasn’t reported until 2009, according to the New York Times.
There’s just one hurdle: Someone has to start the chain by agreeing to give a kidney to a stranger.
Tyler Weig is an altruistic donor who started a chain of 5 kidney transplants in 2013.
But it wasn’t as if he woke up one day, strolled to the hospital, and asked a surgeon to slice him open. It actually started started on Facebook: Weig, 33, of Iowa, was browsing the site when he saw a post about a man who needed a kidney and was using the social network to appeal to potential donors. A few months later, the man re-posted his plea. He still hadn’t gotten an organ.
“I thought, “Well, shoot. There’s lots of people who liked it and shared it. I thought he’d have a kidney by now,'” Weig told INSIDER. “But then it kind of hit me that maybe I’m doing what everyone else is doing — just hoping that he gets it.”
So Weig got tested at a local transplant center to see if he was a match for the man on Facebook. He wasn’t, but during the requisite suite of tests, he learned about altruistic donation and kidney transplant chains. The more he considered the concept, the more it amazed him, and soon, he decided to donate.
Weig’s kidney eventually went to a complete stranger named Lance Beyer. Lance’s wife, Julie, had wanted to donate to him, but the two didn’t match. Since she was already willing go through with a donation, Julie gave a kidney to a different stranger — a man named Jay Lindahl . Lindahl and his friend Mike Dodge weren’t a match, but Dodge passed a kidney onto another mismatched pair: Nick Titus and his aunt, Mary Sleeth. Sleeth donated a kidney to Nerissa March, and finally, Nerissa’s husband, Peter, completed the final link of the chain, giving a kidney to Dawn Inman.
All 10 surgeries happened over the course of three days at Mercy Medical Center in Des Moines, Iowa, the Mason City Globe Gazette reported at the time.
And Weig’s example is fairly small compared to other chains completed in the US: Rick Ruzzamenti, 49, of California, was the first donor in a chain of 30 transplants. Kathy Hart, 49, of Minnesota, started a 34-transplant chain. Paula King, 48, of Georgia, launched the longest chain in US history to date, with 56 transplants.
But there’s still one burning question: Why did they do it?
Most of the men and women INSIDER interviewed became altruistic donors in a similar way: They set out to give a kidney to a friend or acquaintance, found out they weren’t a match, and decided to give one to a stranger anyway. For them, donating was a way of solving a problem instead of just sitting around waiting for someone else to do it.
“I know that sometimes it can feel like you’re reacting to life. Good things happen, bad things happen, you don’t play much of a role,” Weig said. “And I think that was part of the reason that inspired me [to donate]. I wanted to be on the offensive. I wanted to say, ‘This is an issue that I can do something about.'”
“For me this was such a simple fix,” agreed Broussard. “A lot of us do a lot of talking. I think sometimes we have to do more than talking to really impact humanity.”
Others were compelled to donate by watching loved ones struggle with illness.
King’s former husband, for example, was battling leukemia and needed a bone marrow transplant. In his hour of need, he could find no willing donors who were also matches.
“It was a helpless feeling knowing that somebody out there was a match,” King told INSIDER. “It’s a helpless feeling when you’re not in control.” Later, a trial drug helped her husband recover. “But that feeling kind of stayed,” King recalled.
Their reasoning makes sense on an intellectual level, sure — but to most of us, the act of sacrificing an organ for a stranger still seems generous to the point of absurdity.
It turns out that there may be a scientific reason that altruistic donors’ actions are so hard for us to understand — a scientific reason that they’re willing to donate to strangers while most people are not.
Donors’ brains might be wired for extreme generosity.
Dr. Abigail Marsh, director of Georgetown University’s Laboratory on Social & Affective Neuroscience, recently discovered that the brains of altruistic kidney donors are built differently than the brains of average people. She recruited 19 donors and 20 non-donor controls for a series of experiments. Every participant underwent brain scanning while viewing images of fearful, neutral, and angry facial expressions.
She found that the altruistic donors were better than the controls at recognising looks of fear on other people’s faces — a sign, perhaps, of increased empathy for those in distress. She also found the donors had increased activity in the amygdala, a structure of the brain that’s involved in processing fearful expressions. The donors’ amygdalae were also about 8% larger, on average, than the control participants.
The research is still preliminary, but it’s one potential explanation for donors’ selflessness — and a fascianting one at that.
In a 2016 TED Talk about her research, Marsh presented an interesting thought:
“100 years ago people would have thought it was ludicrous how normal and ordinary it is for people to donate their blood and bone marrow to complete strangers today. Is it possible that 100 years from now people will think that donating a kidney to a stranger is just as normal and ordinary?”
It seems altruistic donors are simply ahead of the curve: They already think that donating a kidney to a stranger is normal and ordinary.
Plus, kidney donation isn’t as risky as you’d think.
In fact, kidney donors actually outlive the average person, though this might be because donors tend to be very healthy people who’d live long lives anyway.
And just 0.03% of people who donate a kidney die because of the donation. For comparison, that’s 20 times lower than the current infant mortality rate in the U.S. In the words of the National Kidney Registry: “It is about 20 times riskier to be born in the United States than to donate a kidney.”
Donors do have to be careful with their remaining kidney by maintaining a healthy lifestyle and protecting themselves from injuries. The National Institutes of Health reports
that some donors may be at increased risk for kidney disease and high blood pressure ( and other authorities note
that there’s a lack of research on the long-term risks for living donors) but most people lead perfectly healthy, normal lives with one kidney.
Financial concerns are also minimal: According to the United Network for Organ Sharing, the recipient’s insurance or Medicare typically covers any donor medical expenses relating to the donation itself. (However, donors do have to factor in the cost of recovery time away from work — and insurance may not cover post-op complications.)
“It’s not like I wake up every morning and think, ‘I’m missing a kidney,'” Weig said. “I don’t really think about it.”
Not one donor we interviewed was nervous about the surgery itself, either.
Hart was only worried that an unexpected setback — the flu, low iron levels, a car accident on the way to the hospital — would prevent her from donating. “I was afraid that something would go wrong and that I wouldn’t be able to follow through,” she told INSIDER. “That I would be disappointing whoever’s on the other end.” (Side note: Donors and recipients typically remain anonymous until after the procedures have been completed.)
For people who need kidneys, transplants can dramatically improve quality of life.
Without functioning kidneys, patients are forced to endure multiple weekly treatments of dialysis, a medical procedure that mimics kidneys’ main function by removing waste products from the blood. It works, but patients live an average of just 5 to 10 years on dialysis,
according to the National Kidney Foundation (NKF).
But a transplant, the NKF notes, can double a patient’s expected life span — and kidneys from living donors last twice as long as kidneys from deceased ones.
All it takes is someone willing to give.
Every donor agreed: Giving up a kidney hasn’t been a huge deal.
Each of the six altruistic donors we interviewed stressed that donating wasn’t radically transformative, and that life is no different post-donation. Most dealt with post-op pain, discomfort, and downtime, but went back to work within a few weeks. (Broussard ran an ultra-marathon the very same year!) None had serious medical complications. Many had emotional meet-ups with the people who received their kidneys (King discovered that she and her recipient attended Navy boot camp at the same time) but few have stayed in touch after the fact.
Mostly, things just went back to normal.
“My phone was ringing off the hook because the New York Times [wrote about] it,” Ruzzamenti said of the weeks after his donation. “And they didn’t put me on any talk shows at all because I was so boring. No big deal, just donated a kidney, who cares.”
“I feel like I should be able to say that the whole experience has given me some grand new outlook on life,” donor Jennifer Barrett, 37, of Florida, told INSIDER. “But truly it hasn’t.”
These sentiments seem strange at first. How could these donors be so nonchalant about such deeply impactful gifts?
But it’s not nonchalance at all. It’s simply that — to them — the choice to donate wasn’t a difficult one.
“It’s probably one of the easiest, clearest decisions I’ve ever made,” Hart said. “The [altruistic donors] that I’ve talked to, we’ve all sort of had the same feeling, like, ‘Why wouldn’t I? I don’t need it and someone does.'”
In other words: When these donors were presented with the opportunity to give up a kidney to a stranger in need, there was no hemming, hawing, or worrying. Saying yes was the only decision that made sense.
“I ran into an acquaintance and he said, “What on earth made you do decide to do that?” Barrett recalled. “It honestly baffles me that anyone would have to ask.”
Learn more about becoming a living kidney donor at the National Kidney Foundation.
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