Survival of the savviest'

Part 1: 'Survival of the savviest'
Kidney disease has hit crisis stage, and demand for organs is exploding. In the free-for-all search for a living donor, Melissa Larson is on her own.
By JOSEPHINE MARCOTTY

Two years ago Melissa Larson made the rounds at bars and convenience stores in Big Lake and Monticello, posting 2,000 fliers she had painstakingly printed on her mother's home computer.

The way some people look for a lost dog or a baby sitter.

Only in big type hers read: "Kidney Donor Needed."

Today when Larson spots one of the yellowing fliers, she still feels a spark of hope. "I can't sit on the waiting list forever," she says. "Nobody is going to find this kidney but me."

The 40-year-old single mother from Monticello is among the soaring number of Americans with end-stage kidney disease. An aging population, along with epidemics of diabetes, obesity and high blood pressure, are creating an explosive demand for new kidneys and even spawning an international black market for the organs. Last year 16,500 people received transplants -- and another 33,000 added their names to the waiting list. It is a public health crisis that costs the nation $33.6 billion a year, and there is no end in sight.

Larson's life is defined by daily dialysis treatments, frequent doctor visits and fatigue so crushing that she scarcely has the energy to raise her two kids. She has only two ways out, and both are a kind of kidney roulette -- with her life as the stakes.

She can join 80,000 people on the national waiting list for a kidney from a deceased donor. It is regulated, scrupulously fair, and managed by the finest transplant surgeons in the country. But the average wait is at least five years, and every day another dozen patients on the list die.

Or Larson can plunge into the anarchic world of living organ donation, a national free-for-all of thousands of desperate patients hunting for donors on everything from Craigslist to church bulletins.

The result? Patients and surgeons are wrestling with daunting new ethical questions, governments around the world are rewriting laws on kidney donation, and often only those with luck and money find a living donor.

"Survival of the savviest,'' is how University of Minnesota bioethicist Jeff Kahn describes it.

A better system -- with higher rates of deceased donation and better ways to connect patients with willing donors -- could cut hundreds of millions from the cost of treating end-stage kidney disease.

It might also give Melissa Larson her life back.

Life on dialysis

Larson's first transplant 12 years ago was straightforward. She had a disease that caused a potentially fatal buildup of protein in her kidneys. She discovered it in the middle of her first pregnancy when, suddenly, her kidneys failed. Within months of giving birth she got a kidney from her brother, and she and her newborn son moved in with her mother while she healed.

For 10 years she lived a normal life in Monticello. A charming woman with warm brown eyes, she ran a flower store and managed coffee shops.

"Everyone in Monticello knows me," Larson said.

She was healthy enough to have a second child, and, as an adventurer by nature, she developed a love for Harley-Davidson motorcycles. Then she started getting sick again. Doctors told her that her new kidney was failing.

It felt, she says, as if she had failed her brother. "He gave part of his life for me," she said.

Her doctors say it was simply chronic rejection. Only 60 percent of kidneys from living donors last a decade or longer, and kidneys from deceased donors often fail sooner -- big reasons that the transplant list continues to grow.

In the 12 years since Larson's first transplant, demand for kidneys has exploded. The number of people with end-stage kidney disease has risen from 400,000 in 2000 to more than 500,000 today, and it is expected to increase another 50 percent by 2015. In Minnesota alone, nearly 10,000 people have the disease.

"We don't have enough kidneys from people who die," said Dr. Amy Waterman, a transplant psychologist at Washington University in St. Louis. "There is a humongous gap and it's getting worse.''

Larson's name went on the waiting list in August 2007, the same month the focus of her life became dialysis.

Three days a week, five hours a day, she sat in a recliner at the CentraCare Dialysis Center in Big Lake while a machine cleaned the toxins from her blood. Wrapped in a child's blanket, she slowly pedaled an Exercycle to help push her blood through the plastic tube that snaked from her chest into the white machine at her side.

A full-time job

Like almost everyone with end-stage kidney disease, Larson gets insurance through Medicare. She and her kids live with her fiancé in his townhouse. If it weren't for him, they would all be living with her mother -- again.

"This is my job," she said one day in June as she pointed at the dialysis machine with her thumb.

She can't drink liquids. She sucks on a cup or two of ice each day to limit the fluid in her body. She is not supposed to eat chips -- too much salt. Or dark soda -- it is full of potassium that the machine can't filter. But on dialysis days, as a treat for herself, she sometimes sneaks them.

"It's getting cleaned anyway," she said with a shrug. But not all that well. Dialysis is much less effective than the human kidney at cleaning toxins from the body.

In July, she worked up her courage and tackled home dialysis. She had to memorize pages of instructions and manage a spaghetti tangle of plastic tubing that snaked between her body and the machine.

One mistake could land her in the hospital for weeks with an infection. Each day she has to pick off the scab that forms over the end of the port surgically implanted under her skin and insert a needle into her arm.

By August, she had the technique down. She could stay home and sit in the recliner her mother gave her, the machine humming quietly by her side. Harley, her vivacious miniature Yorkshire terrier, snoozed in her lap. The daily treatments mean she can drink more fluids, and she feels so much better she was able to take a part-time job as a receptionist in a law office. Still, she feels only a little less like a prisoner.

"This life is for retired people," Larson said.

On Sept. 7, the day she turned 40, she still hadn't found a donor.

The pool expands

Larson has two strikes against her. Only someone with her blood type, O, can be her donor. She also has a rare set of antibodies, proteins that are part of the immune system. They would attack any kidney that wasn't a precise match.

Twenty years ago, she probably would have been consigned to a life on dialysis. But that was before a series of breakthroughs in living donation.

The number of living-donor kidney transplants has more than tripled over the past two decades, transforming the landscape for surgeons and patients alike. In Minnesota, living donors now provide the kidneys for two-thirds of the transplants, one of the highest rates in the country. New surgical procedures have made it safer for doctors to remove kidneys from living donors. Long-term studies have found that healthy donors live normal lives. New anti-rejection drugs have expanded the pool of potential donors far beyond genetically related relatives. Today, the pool includes spouses, cousins, in-laws, friends, friends of friends, co-workers.

"Or you met in the produce section of the grocery store who overheard a conversation over the cantaloupes," said Kahn, the bioethicist. "It just got extended and extended. Then the Internet blew that sky high."

But the two supply systems -- living and deceased -- remain radically different.

Organs from deceased donors are viewed as a public asset -- like national parks -- and their allocation is highly regulated for fairness and transparency. There are disparities in who earns a spot on the deceased donation list, but they are generally viewed as a consequence of inequities in the overall health care system.

A living donation, on the other hand, is a private gift from one person to another. Except for a federal law that makes selling organs a felony, there is no oversight and no support for living donation by the government or the transplant community.

As a consequence, finding a living donor is often a matter of wealth, social advantage -- or pure luck.

A 2009 study of 40,000 kidney transplant patients found that those most likely to find a living donor were younger, white, more highly educated, and more affluent.

Even after accounting for income and education, blacks and Hispanics were only half as likely as whites to find a living donor, the study found.

"That was shocking," said Dr. John Gore, who conducted the study while researching health disparities at the University of California, Los Angeles. He is now an assistant professor of urology at the University of Washington in Seattle.

To compound that unfairness, the lucky patient who gets a kidney from a living donor is also more likely to keep it longer.

"Those kidneys do better," said Dr. William Cowardin, Larson's doctor in St. Cloud. "And the patients do better."

That's partly because living donors must be reasonably healthy in order to donate. No such restriction exists for the deceased.

A doctor's dilemma

Kidney doctors confront the desperate need for kidneys every day. But they draw the line at soliciting donors. That, they say, would violate the primary ethic in medicine -- first, do no harm.

"We should not be soliciting individuals to be donors," said Dr. Francis Delmonico, a Harvard University transplant surgeon and former head of the United Network for Organ Sharing (UNOS), which manages the national transplant system. "It would be like the draft -- 'Uncle Sam wants you.'"

But as the need has intensified, so has the debate.

Today, the Organ Sharing network is mired in conflict about how best to ration kidneys from the deceased, whether to compensate the living for donating and how to create a national system to match willing donors to recipients. Congress is considering legislation to cover travel and other expenses for living donors, but so far there has been little headway.

As a result, patients must still rely on their own devices to find living donors. They ask relatives, advertise on Craigslist, use Internet bulletin boards such as Living Donors Online, or pay $600 to post their profiles on MatchingDonors.com, a Massachusetts-based service that has generated fans and critics.

Larson doesn't have the money for that, but she has a website -- www.kidney4mel.com.

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