The Kidney Crisis
Myths about organ donation and transplantation are still contaminating the real issues behind a silent health problem
Dr. Alan Koffron
Dr. Alan Koffron can conjure scene after scene from the medical TV genre where human kidneys have been integral to the plot: residents dropping them on the floor, crooked doctors profiting from organ trafficking, the wrong kidney placed in the wrong body.
Kidney transplantation — the most commonly performed of all transplant procedures in the world — ranks high on the medical dramatics scale, Koffran says, but he’s not sure why. An organ transplantation surgeon with Beaumont Hospital in Royal Oak, Koffron has performed thousands of kidney transplants. He and the other medical professionals involved in the process across the country know how heavily regulated it is in the United States, with checks and balances so strong that rarely does a kidney transplant involve any- thing remotely attention-worthy. Like the predictable logistics of any activity performed over and over, the transplant procedure itself, Koffron says, is also relatively easy and drama-free. He compares hooking up a donated kidney with the act of “plumbing,” where you make sure you get a couple of key attachments right and you’re basically done.
By contrast, there are aspects of kidney donation so much more challenging that they rarely play out in popular culture. “It’s easier to portray the pizzazz of a kidney falling on the floor, the heartstrings being pulled, the ‘science fiction’ of it all,” Koffron says. “That doesn’t help us portray the reality; the need and the safety” involved with organ-donation issues. More importantly, Koffron says, the urban legends are continuing to upstage the deeper conversations we could be having on how to more effectively address a silent health crisis.
Kidney disease and the resulting failure of one of the body’s most underrated mechanisms for keeping us in “beautiful equilibrium” — as one local woman who gave a kidney to her mother describes it — is on the rise. It will become a bigger problem as we live longer but fail to fix underlying causes like obesity and diabetes. Organ transplantation is the only viable, long-term treatment for kidney failure, but organ donation is perpetually caught up in politics and fear.
And no matter how the issue is framed, there aren’t enough kidneys to meet demand. By 2020, statistics indicate that at least 800,000 Americans will be suffering from kidney disease. Today there are close to 100,000 people waiting on a transplant — and nowhere near the supply of kidneys.
Unlike the ubiquitous campaign to save women’s breasts, it seems there’s nothing reminding us to “save our kidneys.”
For those in kidney failure, there couldn’t be a more pressing message. Raffaele Berlingieri’s genetic kidney disease wrecked his health in his early 40s, making him eligible for a transplant, but also sending him to an uncertain future on dialysis. “It was like trying to swim with four sweaters on,” says Berlingieri of his energy levels, the result of his kidneys functioning at less than 20 percent capacity when he had to confront the possibility of a transplant last year.
Berlingieri was lucky — his friend Dr. James McBride gave him one of his kidneys in May (more on that later). But most patients get stuck in limbo, waiting for a new kidney while having to rearrange their lives to artificially keep their bodies going. Berlingieri says the ordeal made him acutely aware of the quiet sophistication of a system that cleanses us 24 hours a day, seven days a week, from the toxins that build up inside us as we live our daily lives. We’d all die within two weeks if the system stopped working. Thousands of people die every year in the United States while on dialysis, a mechanical way of cleansing the blood and, as most experts will tell you, a generally poor substitute for a kidney’s superior abilities.
Compounding the issue is a culture in America that fiercely protects our freedom over our physical bodies. The thought of an “opt-out” option for organ donation, instead of an “opt-in,” just seems crazy — no one can tell us what to do with our bodies, even in death. There are also some persistent, but wrong, beliefs about medical science that seem downright strange in the 21st century, and they’re not just coming from would-be donors.
A recent University of Michigan study, for example, revealed that many people, if confronted with the need for a transplant, would worry over the possible “transference” of personality traits from a donor. They’d be “creeped out” knowing that a donation came from a murderer or a thief. At a basic level, these findings only confirm how hard it can be to separate mind from body. But the study also indicates that this line of thinking could actually harm an organ recipient by contributing to an increased resistance to the transplant.
Of course there’s no medical evidence to support the belief that the “essence” of who we are could ever be changed by accepting the blood, tissues, or organs of someone else. The authors of the study say that their findings, published in the journal Cognitive Science, would ideally be used in the future to dispel these beliefs — and to strategically address organ shortages.
Meanwhile, the general myths about the entire process remain strong, keeping the number of available kidneys across the country stagnant as need grows.
It’s something that Koffron, Beaumont Health System’s chairman of surgery and a recognized expert in the ethics of organ donation and transplantation, confronts every day in real life. Sitting in his office at Beaumont, he challenges me to stand in the parking lot of a Walgreen’s and ask 10 random people what they think would happen if they elected to be organ donors through Michigan’s Department of State. Koffron suspects that most people would have a vague sense that something “shady” is going on — a general fear that offering up their bodies in the event of death would peg them as easy prey during a medical crisis in the emergency room.
Dr. Dilip Samarapungavan
If that kind of reaction sounds bizarre, consider what Koffron’s colleague, Dr. Dilip Samarapungavan, once heard from a medical student:
“Unfortunately, and I hate to say this, even in the medical community, there is a misunderstanding” of what happens when you choose to be an organ donor, says Samarapungavan, a nephrologist and the medical director of the multi-organ transplantation program at Beaumont. “I actually had a medical resident who was training in a transplant clinic. And this person was very proud of the fact that he had discussed it in their family and that their family would want to donate should they pass away.
“So I asked, ‘Have you registered with the Secretary of State?’ And the individual said, ‘Oh, no, we would never do that, because when it’s on your license, that’s the first thing they look at when you come to the emergency room. We don’t believe that we would get treatment.’”
This is another unfounded, but fairly common concern that acts as a barrier to the availability of viable kidneys that can be used after death.
The barriers to “live” kidney donation — when a living donor gives away one of the two kidneys that most of us are born with — are stronger and more complex.
This is especially unfortunate, Samarapungavan says, since live donation is considered the gold standard of treatment for those with kidney failure. We can all live with just one kidney, and on average, transplant procedures with kidneys from live donors can last twice as long as those performed with donations from cadavers. And yet, understandably, giving away “parts” of our body while still alive seems like such a huge emotional and physical undertaking.
“The fear is so much more palpable with live donation,” Samarapungavan says.
Koffron can’t blame them. Live donation involves major surgery for not one, but two people. “In a perfect world,” he says, “I wouldn’t advise anyone to get any kind of surgery. But the fact remains that live donation is completely safe.”
When I meet Raffaele Berlingieri and Dr. James McBride, I picture them as childhood friends. But they met as neighbors 15 years ago while living on the same street in Shelby Township. They both had wives, kids the same age, and a strong Christian faith. So they became close and maintained a strong connection even after McBride moved his family to a different house several years later. That house burned to the ground in an electrical fire, and it was Berlingieri who helped his family build a new one. Their bond was obviously tight.
They hadn’t seen anything yet.
Dr. James McBride
Though they shared a lot, one thing Berlingieri had never told McBride was the fact that his health was on a silent collision course. Berlingieri suffered from polycystic kidney disease, one of the most common, life-threatening genetic conditions. The disease, which causes cysts in the kidneys that typically affect kidney function over the course of many years, is also a leading cause of kidney failure.
Berlingieri knew he’d have to deal with the condition at some point in his life, but not as soon as last fall, when doctors told him that his kidneys could soon shut down. By early spring, his kidney function had fallen to less than 20 percent, qualifying him to be put on the list of those waiting for a transplant. Others in Berlingieri’s family who had polycystic kidney disease had never experienced serious complications until their mid-60s. Now, at 44 with a full-time job and four kids, he’d need to go on dialysis to sustain him while he waited for a miracle.
“It was nerve-wracking,” says Berlingieri. “It had us all worried.”
McBride is a gynecologist with Oakland Macomb Obstetrics and Gynecology. His expertise is in delivering babies and performing C-sections. He’d never given a thought to kidney health, organ donation, or transplantation. But McBride was a man of science — and faith. When he heard about Berlingieri’s health crisis, he immediately offered to be a living donor.
That was around New Year’s Eve, 2012, and Berlingieri says he didn’t think it would ever come to that. By the time March came around, however, the prospect of prolonged dialysis had become very real, and he reluctantly asked McBride if he was still serious about the offer. Berlingieri has trouble asking for help for anything, and the thought of a friend being so willing to give a kidney, he says, was an overwhelming, “humbling” feeling. He knew McBride, who has five kids of his own, didn’t have to do it.
When McBride said the offer was still good, Berlingieri wasn’t surprised. “He walks the walk before he talks the talk,” Berlingieri says. “A friend like that comes to you once in a lifetime.”
McBride, however, prefers to think of what he did on more pragmatic terms. He didn’t even know at the time if he’d be a good match for Berlingieri. For all McBride knew, his generous offer would end up not mattering at all. But he was serious about going through the process. And he says he prayed that he would be a good match.
After rigorous testing that revealed he was healthy enough to be a live donor, McBride donated a kidney to Berlingieri on May 29. The surgery left McBride with little more than two weeks of pain from the scar. “I think you know when you have people in your life that need something, whether they need your time, or your money, or they need something that’s literally life or death,” he says. “So you take inventory. And if you’re in a position to be able to do it, you do it.”
More than helping just one friend, McBride says the experience opened his eyes to the science behind kidney transplantation, how far the procedure’s come, and the fact that people would probably have an easier time becoming live donors if there weren’t as much mystery and misunderstanding attached to the procedure.
Still, McBride is now a part of an elite group. Live kidney donors are rare. This is why a majority of kidney transplants performed in the United States are done with kidneys taken from people who have just died, despite the fact that these types of transplants last about half as long (people can go through multiple transplants to help sustain a longer life). McBride was surprised when he found out how much he could help prolong Berlingieri’s chances of thriving after transplant surgery by giving him a live kidney — about 25 years compared with about 12, had Berlingieri received the organ from a cadaver. McBride says this only made him more determined to go through with the procedure for his friend.
There were other things just as surprising, McBride says. “Checking the box” on your driver’s license application to become an organ donor is not a legally binding contract, for instance — family members can still reject organ donation after death. And for all the testing, waiting, and worrying he went through to get to the day of surgery, McBride says the entire process actually allowed him to walk away more confident about his own health.
This is the typical experience for live kidney donors, Dr. Samarapungavan says, citing studies over the years that have proved that those healthy enough to donate a kidney have the same chances as the general population of living into their late 70s and beyond. No surgical procedure is without risk, experts say. But other studies have shown that live kidney donors may even live longer, Samarapungavan says, since they’re so healthy to begin with and tend to be more vigilant about their health after the procedure.
Koffron says that the strongest ethical struggle in organ donation and transplantation policy, in fact, is the running conversation about how to keep donors healthy. “People assume that we just want to ‘use’ healthy people for transplants,” Koffron says. But he notes that the real goal is to make sure that the healthy people at the beginning of a transplant procedure — those who are electing to have a surgery they don’t need — will come out as healthy after the procedure. When the donor is protected medically as much as possible, Koffron says, the result is usually a successful transplant for the recipient.
Ellen Piligian is a Detroit-based journalist who is healthy 10 years out from donating a kidney to her mother. She is the one who first describes to me the “beautiful equilibrium” that the kidneys maintain inside the body. But like McBride, Piligian didn’t have a clue of that until her mother, Carol, also went into unexpected kidney failure because of an autoimmune disorder that had never been diagnosed. In a strange twist of fate, Piligian found out at the same time that her father, a pathologist who spent the majority of his career at Detroit Medical Center, also had polycystic kidney disease, but had not revealed it to his family.
All of a sudden, Piligian was dealing with two parents whose health hinged on their kidney function. And because of the chance that she might also have inherited polycystic kidney disease from her father, Piligian wasn’t sure if she’d ever be a suitable candidate to donate to her mother.
The situation thrust Piligian into a world she knew nothing about: donor lists, donor ethics, cross-country searches, and backup plans. She describes waiting to find out if she had polycystic kidney disease like “waiting to find out if the tumor was benign or malignant.”
Fortunately while going through the donor approval process, Piligian found out her kidneys were healthy. There were other complications, however. More initial testing revealed that Piligian might not be an ideal donor overall, even though she and her mom were a match. That was in 2001, long before social media, and yet it prompted Piligian to search the Internet for a stranger who might be willing to become her mother’s donor.
Piligian found a woman who had gone through something similar with a friend who needed a kidney. She ultimately wasn’t a match, but said the experience inspired her to become a donor after realizing the great need for organs.
In the meantime, Piligian found out that she could become her mother’s donor after all, and they underwent the transplant procedure in 2003. Piligian’s father went on dialysis four years later when his polycystic disease caught up to him. He rejected the option to go on the transplant list. Both have since passed away — Piligian’s father from his kidney failure, her mother from complications from a surgery unrelated to her transplant.
Piligian today is left with a profound sense of what could happen if more people were educated about kidney disease. And if it happened to them, Piligian says, people would be able to address kidney failure from a place of knowledge instead of fear. She knows that most people can’t rely on family and friends to save them in this situation, and yet they can’t necessarily rely on a kidney donated from a stranger in death, either.
“I wouldn’t have had to do what I did,” if more people considered organ donation, Piligian says. “People need to start having the conversation.”