More than 60,000 people in the U.S. each year anxiously await word about an available kidney from the Organ Procurement and Transplantation Network (OPTN), a national waiting list for people who need heart, kidney, liver, lung and pancreas transplants, but that call can take as long as five years to materialize. For patients like Wyman, who develop harmful antibodies that make rejection of a new kidney highly probable, finding a match is even more challenging. In Wyman’s case, if she were tested against 100 percent of the general population, she’d reject 97 percent of their kidneys. Wyman’s father, a willing donor, fell into that 97 percentile.
The outlook was dire, until a Google search led Wyman to Johns Hopkins Hospital, an institution that had run an incompatible kidney exchange program since 2001. The system would gather mismatched recipient/donor pairs like Wyman and her father, and run them against other pairs to find a fit. In 2004 Hopkins linked Wyman and her father with two other pairs, and a transplant team led by Dr. Robert Montgomery, successfully swapped the kidneys around to match with the recipients. Considering the success for these three pairs of recipients/donors, the obvious question is: Why not implement a national kidney exchange program? Lead transplant experts met in Chicago this February to discuss doing just that. “What very clearly came out of this is that there is a will among transplant centers in the U.S. to try and create a national matching system,” says Dr. Montgomery, “because everybody recognizes the power of that.”
Though there have been murmurs about establishing a national exchange program for years, momentum is now building. Johns Hopkins and the Massachusetts Institute of Technology recently teamed up in an attempt to produce an algorithm that would provide the greatest number of incompatible donor/recipient matches. Dr. Montgomery, associate professor of surgery and director of the Comprehensive Transplant Center at Johns Hopkins, estimates that a national exchange program could boost the approximately 15,000 cadaveric and living donor transplants each year to as many as 3,000 additional transplants. Because the United Network For Organ Sharing, which runs OPTN, has the greatest degree of resources for this type of program, many experts, including Dr. Montgomery, are hoping that the organization will set up a database to track and match potential candidates.
Until nationwide logistics are nailed down, experts at the Chicago conference urged local and regional programs, such as those in Ohio, New England, Illinois and Washington, D.C., to forge ahead. So far, 50 patients in the U.S. have received transplants through paired kidney donation (Johns Hopkins leads the way with 22). Most of these institutions have two stipulations: no meeting and greeting with the other family before the surgery, and the swaps have to occur simultaneously. “That’s the best way to prevent people from backing out,” says Dr. Lloyd Ratner, who performed the very first single kidney exchange at Johns Hopkins in 2001, and now heads the Renal and Pancreatic Transplantation Program at New York-Presbyterian/Columbia University Medical Center. “The worst thing that could happen is someone says ‘OK, my loved one got a kidney, now I feel like I’m going to back out.’”
Jane Thomas, who donated her kidney to another pair on behalf of her stepdaughter, remembers the day of their swap at New York Presbyterian. “The [other pair] was on one floor and our family was on another,” she says. “While we were having fun getting cut up, our families were out there trying to figure out ‘OK, is this the other family?’” The process is so emotional that donors and recipients are naturally curious about who the other pair is, but the hospital goes to great lengths to keep them apart. “We don’t want somebody to meet somebody [else] and say ‘Gee, this guy’s a jerk, I don’t want to give my organs to him,’” says Dr. Ratner.
Occasionally, the initial matches don’t work out, which can be devastating for patients. For recipient Jerry Conner and his wife and kidney donor, Ammie, it took a mere six months from the time they initially contacted Johns Hopkins to get put on the calendar for an exchange. The couple temporarily moved into a Baltimore apartment from Winchester, Va., specifically for the transplant. But the night before the swap in November 2002, Hopkins called to tell them it wasn’t going to happen. As far as the Conners know, something came up in the other donor’s blood work. “All of our family was there, everybody was ready,” says Ammie. It didn’t work out the first time, but two months later, Jerry, now 64, got the kidney he needed, and in exchange, Ammie, now 63, contributed her own. The Conners now consider the other family, well, family.