The Kidney Crisis

Myths about organ donation and transplantation are still contaminating the real issues behind a silent health problem // Photographs by Josh Scott
7122
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 鈥 the most commonly performed of all transplant procedures in the world 鈥 ranks high on the medical dramatics scale, Koffran says, but he鈥檚 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 anything 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 鈥減lumbing,鈥 where you make sure you get a couple of key attachments right and you鈥檙e basically done.

By contrast, there are aspects of kidney donation so much more challenging that they rarely play out in popular culture. 鈥淚t鈥檚 easier to portray the pizzazz of a kidney falling on the floor, the heartstrings being pulled, the 鈥榮cience fiction鈥 of it all,鈥 Koffron says. 鈥淭hat doesn鈥檛 help us portray the reality; the need and the safety鈥 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鈥檚 most underrated mechanisms for keeping us in 鈥渂eautiful equilibrium鈥 鈥 as one local woman who gave a kidney to her mother describes it 鈥 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鈥檛 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 鈥 and nowhere near the supply of kidneys.

Unlike the ubiquitous campaign to save women鈥檚 breasts, it seems there鈥檚 nothing reminding us to 鈥渟ave our kidneys.鈥

Raffaele Berlingieri

Berlingieri was lucky 鈥 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鈥檇 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鈥檚 superior abilities.For those in kidney failure, there couldn鈥檛 be a more pressing message. Raffaele Berlingieri鈥檚 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. 鈥淚t was like trying to swim with four sweaters on,鈥 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.

Compounding the issue is a culture in America that fiercely protects our freedom over our physical bodies. The thought of an 鈥渙pt-out鈥 option for organ donation, instead of an 鈥渙pt-in,鈥 just seems crazy 鈥 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鈥檙e 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 鈥渢ransference鈥 of personality traits from a donor. They鈥檇 be 鈥渃reeped out鈥 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鈥檚 no medical evidence to support the belief that the 鈥渆ssence鈥 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 鈥 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鈥檚 something that Koffron, Beaumont Health System鈥檚 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鈥檚 and ask 10 random people what they think would happen if they elected to be organ donors through Michigan鈥檚 Department of State. Koffron suspects that most people would have a vague sense that something 鈥渟hady鈥 is going on 鈥 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

鈥淯nfortunately, and I hate to say this, even in the medical community, there is a misunderstanding鈥 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. 鈥淚 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.If that kind of reaction sounds bizarre, consider what Koffron鈥檚 colleague, Dr. Dilip Samarapungavan, once heard from a medical student:

鈥淪o I asked, 鈥楬ave you registered with the Secretary of State?鈥 And the individual said, 鈥極h, no, we would never do that, because when it鈥檚 on your license, that鈥檚 the first thing they look at when you come to the emergency room. We don鈥檛 believe that we would get treatment.鈥欌

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 鈥渓ive鈥 kidney donation 鈥 when a living donor gives away one of the two kidneys that most of us are born with 鈥 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 鈥減arts鈥 of our body while still alive seems like such a huge emotional and physical undertaking.

鈥淭he fear is so much more palpable with live donation,鈥 Samarapungavan says.

Koffron can鈥檛 blame them. Live donation involves major surgery for not one, but two people. 鈥淚n a perfect world,鈥 he says, 鈥淚 wouldn鈥檛 advise anyone to get any kind of surgery. But the fact remains that live donation is completely safe.鈥

THE NEIGHBOR

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鈥檛 seen anything yet.

Dr. James McBride

Berlingieri knew he鈥檇 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鈥檚 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鈥檇 need to go on dialysis to sustain him while he waited for a miracle.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.

鈥淚t was nerve-wracking,鈥 says Berlingieri. 鈥淚t had us all worried.鈥

McBride is a gynecologist with Oakland Macomb Obstetrics and Gynecology. His expertise is in delivering babies and performing C-sections. He鈥檇 never given a thought to kidney health, organ donation, or transplantation. But McBride was a man of science 鈥 and faith. When he heard about Berlingieri鈥檚 health crisis, he immediately offered to be a living donor.

That was around New Year鈥檚 Eve, 2012, and Berlingieri says he didn鈥檛 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, 鈥渉umbling鈥 feeling. He knew McBride, who has five kids of his own, didn鈥檛 have to do it.

When McBride said the offer was still good, Berlingieri wasn鈥檛 surprised. 鈥淗e walks the walk before he talks the talk,鈥 Berlingieri says. 鈥淎 friend like that comes to you once in a lifetime.鈥

McBride, however, prefers to think of what he did on more pragmatic terms. He didn鈥檛 even know at the time if he鈥檇 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.

He was.

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. 鈥淚 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鈥檚 literally life or death,鈥 he says. 鈥淪o you take inventory. And if you鈥檙e in a position to be able to do it, you do it.鈥

More than helping just one friend, McBride says the experience opened his eyes to the science behind kidney transplantation, how far the procedure鈥檚 come, and the fact that people would probably have an easier time becoming live donors if there weren鈥檛 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鈥檚 chances of thriving after transplant surgery by giving him a live kidney 鈥 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. 鈥淐hecking the box鈥 on your driver鈥檚 license application to become an organ donor is not a legally binding contract, for instance 鈥 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鈥檙e 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. 鈥淧eople assume that we just want to 鈥榰se鈥 healthy people for transplants,鈥 Koffron says. But he notes that the real goal is to make sure that the healthy people at the beginning of a transplant procedure 鈥 those who are electing to have a surgery they don鈥檛 need 鈥 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.

THE DAUGHTER

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 鈥渂eautiful equilibrium鈥 that the kidneys maintain inside the body. But like McBride, Piligian didn鈥檛 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鈥檛 sure if she鈥檇 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 鈥渨aiting to find out if the tumor was benign or malignant.鈥

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鈥檚 donor.

Piligian found a woman who had gone through something similar with a friend who needed a kidney. She ultimately wasn鈥檛 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鈥檚 donor after all, and they underwent the transplant procedure in 2003. Piligian鈥檚 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 鈥 Piligian鈥檚 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鈥檛 rely on family and friends to save them in this situation, and yet they can鈥檛 necessarily rely on a kidney donated from a stranger in death, either.

鈥淚 wouldn鈥檛 have had to do what I did,鈥 if more people considered organ donation, Piligian says. 鈥淧eople need to start having the conversation.鈥