May-June 2011 | Health

Desperately Seeking Survival

Nora Greer feared waiting for someone to donate a kidney would kill her. So she decided to go out and find one herself.

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In mid-December 2008, amid the notices about lost dogs, carpools and snow-plowing services that normally clutter the Chevy Chase Listserv, a web-based community bulletin board, this call for help appeared:

SOS. Next year I’ll need a transplant as I slip closer to acute renal failure. I haven’t been able to find a compatible match from family or friends. I’m seeking a healthy person with TYPE O blood willing to consider the donation of a kidney. I know it’s a huge gift and can only come from a very special person. I’m desperately trying to avoid dialysis. …All donor expenses will be covered by the recipient.

The message came from Nora Greer, a freelance writer specializing in architecture and urban affairs who had lived in the Barnaby Woods neighborhood of Chevy Chase, D.C., for 30 years. She had written it in a moment of panic. She was 55 at the time and, given her broad network of friends and sizable extended family, never imagined needing to ask strangers for help.

Six years before her Internet SOS, Greer had undergone a routine gynecological exam that revealed elevated creatinine levels in her blood, an indicator that her kidneys were struggling to filter waste products from her body. The apparent culprit: a poorly monitored, decade-long regimen of lithium used to treat Greer’s bipolar disorder years earlier. The lithium appeared to have irreversibly damaged her kidneys.

Greer managed her kidney disease over the next five years by curbing her salt and protein intake. But in April 2008, Dr. Stefan Dosa of Washington Nephrology Associates predicted her renal function would drop below 20 percent before the year was over. When it hit 10 percent to 15 percent, Greer was going to need a new kidney.

As a matter of course, Dosa gave her the referral that would allow her to place her name on the national wait list for an organ transplant. At the same time, he urged her to find a donor herself.

Getting on the transplant list isn’t like taking a number at the Motor Vehicle Administration and waiting for it to be called. Someone placed on the list after you may get a call before you do. You also might be on the transplant list for years and never get a call.

That’s because each time there’s a donor, your place in the pool of people awaiting a transplant gets recalculated. Potential recipients are ranked according to physical proximity to the donor, time spent on the list, medical urgency, blood type and other factors. Someone who lives in an area with few donors might wait longer than a person elsewhere needing the same organ.

Time spent on the list carries a lot of weight, but that might be about to change. The United Network for Organ Sharing (UNOS) is the nonprofit group contracted by the government since 1986 to manage the nation’s transplant system. Due to a widening gulf between demand for organs and supply, UNOS is considering giving preference to younger people on the list—those likely to get more years out of a donated kidney. Someone like Greer, who is approaching 60, would likely be out of luck.

As it is, 18 people on the national transplant list die each day without getting the call that a donor has been found, according to UNOS. That’s about one person every 90 minutes. UNOS does not include in that figure those removed from the list because they’ve become too ill for surgery, another 3,333 in 2010 alone.

More than 95,000 people on the waiting list died between 1995 and 2010 for want of an organ—more than the number of people who packed Denver’s Invesco Field to hear Barack Obama accept the Democratic presidential nomination in 2008.

The wait list topped 100,000 for the first time in October 2008, and since then it has grown an average of 5 percent each year, with 116,950 Americans awaiting heart, lung, kidney, liver or pancreas transplants by the end of February this year, according to UNOS. Less than a quarter of that number—24,720—received transplants in 2010.

After her diagnosis, Greer wanted to learn all she could about the transplant process. From her home office, she scoured the Internet and books she had gathered, tackling even the most complicated medical texts. She was then able to direct more pointed questions toward Dosa and Julie Trollinger, the transplant coordinator at Washington Hospital Center, where she hoped to have transplant surgery.

Greer learned that the official waiting time for a cadaver kidney in D.C. was four to seven years. Though it was also possible for her to receive a kidney from a living donor—people can live with one kidney—the waiting time for one of those was likely to be even longer, since few people offer kidneys to someone they don’t know.

When she realized that more than 1,000 people were on the D.C. list awaiting a kidney, Greer knew Dosa was right. She’d need to find a living donor herself.