For nearly 30 years, Barbara Cullen successfully managed her polycystic disease—a rare, inherited kidney disorder. And for just as long, her younger sister, MaryBeth Mullen, knew that she would offer to give up a kidney for Barbara if it ever came to that.
Unfortunately, that day came in 2005 when Barbara’s kidneys began to fail. Only MaryBeth learned that her offer was no good. Barbara’s blood is Type O; MaryBeth’s is B. That difference rendered them incompatible—MaryBeth could not donate to Barbara. Until the recent arrival of Dr. Joseph Keith Melancon, Georgetown’s new director of Kidney and Pancreas Transplantation, that is.
Formerly at Johns Hopkins Medical Center, Dr. Melancon, a transplant specialist, has been using an innovative technique for the past five years that primes the recipient’s defense system to accept an organ with a mismatched blood type. This new life-saving procedure significantly expands the potential kidney donor pool for those in need of a transplant.
Even though the kidney is the most common organ transplanted in the US, there is a huge gap between those who need, and those who get, an organ. Part of that discrepancy is due to sheer numbers: nearly 80,000 Americans are currently on the kidney waiting list, far outpacing the supply available from cadaver donations. As a result, most end-stage renal patients must wait an average of four to five years before being matched with a suitable organ.
Kidneys from living donors could help reduce that lag. Nature equipped us with a spare, so losing a kidney does not affect the donor’s ability to function properly afterward. Plus the new organ is fresh and vital, contributing to the best outcomes for the recipient.
Yet incompatibility due to blood type or the presence of other antibodies poses a huge hurdle. In fact, nearly 30 percent of all willing donor/recipient pairs turn out to be incompatible.
“Every day 17 people die while awaiting a kidney,” Dr. Melancon says. “Rather than hoping for a cadaver match that might not happen, it’s far better to find new and improved ways to make use of living donations.”
Barbara and MaryBeth certainly agreed. Both sisters were aware of the desensitization process, which has been in limited use in the US for the past 10 years. When they found out Georgetown was going to start offering it, Barbara eagerly became Dr. Melancon’s first patient at the hospital.
The process of desensitization involves only the organ recipient. It begins with a blood cleansing (plasmapheresis) that rids the system of the cells that would have rejected the previously incompatible kidney. That procedure is followed by the administration of IV immunoglobulin which further incapacitates the patient’s immune system. The dual process is performed before and after the transplant.
The two sisters were operated on, side by side, in September 2008. MaryBeth was in and out of the hospital within two days, and returned to her job two weeks later as deputy director of Smithsonian Journeys, the Smithsonian Institution’s educational travel program. Barbara went home a week after surgery and by November, she, too, was back at work part-time as an administrator at L’Academie de Cuisine, a professional culinary school in Gaithersburg.
Today, they’re both fine and are now concentrating on their older brother, who not only has polycystic disease but also cardiovascular problems that complicate his treatment. Even though he’s been on dialysis for five years, they’re hoping he might be deemed well enough to undergo a transplant someday and are doing their best to see if they can find a suitable donor. He, too, is now under the care of Dr. Melancon.
Looking back on their shared experience, each sister expresses awe of the other.
“Dialysis just keeps you in a holding pattern—it’s no way to live,” Barbara says. “I was really sick and wasn’t going to get better without a transplant. MaryBeth is the real hero in this story. She made a sacrifice.”
For her part, MaryBeth calls her sister the brave one.
“This may sound hard to believe but I actually feel better now than I did before,” she says. “It was very emotional and stressful prior to
the surgery, hoping for so long that I could donate for Barbara and not being able to. I’m very happy—and thankful to Dr. Melancon—for this procedure that allowed me to help Barbara get her life back.”
For more information about Georgetown’s transplant program, call Georgetown MD at 202.342.2400 or toll-free at 866.745.2633.
