http://www.hourdetroit.com/Hour-Detroit/October-2013/The-Kidney-Crisis/The Kidney Crisis
Myths about organ donation and transplantation are still contaminating the real issues behind a silent health problem
By Monica Mercer
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.
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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.”
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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.”
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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.
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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.”
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