Dr. Andrew Levey, a leading nephrologist at Tufts University in Boston, has thoroughly described for hundreds of patients what to expect following a kidney transplant operation. These days, however, Levey speaks with a different authority-the expertise of one who's walked in their shoes himself.
Last December, the editor of NKF's American Journal of Kidney Diseases and leader of the Foundation's workgroup that created the groundbreaking definition and staging system for chronic kidney disease, became a kidney donor himself. Levey donated a kidney as part of a three-pair "kidney swap" so that his wife, oncologist Dr. Roberta Falke, could receive a kidney.
Levey and Falke, who met as medical residents, knew that ultimately they would face the challenge of kidney failure. Like her father and two of her siblings, Falke suffers from a familial disorder, polycystic kidney disease, and she expected that her own kidneys probably wouldn't continue functioning past middle age. Falke took meticulous care of her health, regularly visiting the doctor and getting immediate treatment for acute illnesses and infections. Knowing she was doing all she could, she focused on her roles as mother to her son, Isaac, and physician to the cancer patients who relied on her. She was able to banish thoughts of her disease until she developed symptoms related to enlarging kidney and liver cysts, and advanced kidney disease, over the past three years. Although she had to reduce her work hours, she continued to practice until the week before her transplant.
For Levey, though, too much knowledge wasn't necessarily a good thing. As a kidney specialist, he was all too familiar with every possible complication that could occur. He found it hard to relax, even before Falke showed any symptoms, because he knew what lay ahead. As a husband, he felt duty-bound to help his wife, but he also felt powerless to help restore her health by giving her a kidney, because of incompatible blood type. What he learned throughout this process, though, was that there was a path he hadn't counted on that could provide hope and ultimately, a solution.
Up until a year or two ago, Levey hadn't entertained the thought of participating in a paired exchange program, where kidney recipients essentially swap kidneys from willing donors. While medically eligible to donate, each donor has an incompatible blood type or positive cross match test with his or her intended recipient. By agreeing to give kidneys to unknown but compatible recipients, the donors can enable a chain of transplants when previously no transplant would have been possible.
The couple wasn't sure that paired donor exchange could be a practical reality, so they set about trying to find a donor from among family and friends. But as time wore on, everyone they had considered as a potential donor was eliminated for one reason or another. At the same time, paired donor exchange was becoming more common, and it soon became apparent that this might be the best way for Falke to receive the gift of life.
On December 15, 2009, Levey went under a knife, expertly wielded by his trusted colleagues in his own workplace, Tufts Medical Center. He donated his kidney to Peter Scheibe. Scheibe's wife Susan donated her kidney to Hai Nguyen, and Nguyen's wife Vy Yeng donated her kidney to Falke. Lying in the hospital bed, Levey was struck by how different it is to be the doctor who strides into the room to check in and walks right out the door, versus the patient who is laid up in bed.
"Since donating my kidney, I can tell people exactly what to expect every day post-transplant. I always tended to be close to my patients, but now our connection is so much more direct. They feel like I'm one of them. I have done something that they hope their family members will do or already have done, and they know how important it is to them. They really feel in a way like I'm part of their families," says Levey.
"I have clinic once a week and now when I see patients, we spend the first half of the appointment talking about Roberta and me. Eventually, I have to ask, ‘are we going to discuss your case?' Usually, they tell me, with a wave of the hand, that we'll get to that the next visit. They're far more interested in how the doctor who became a patient is doing."
Falke too has been moved by the experience. "My cancer patients are so sick themselves, yet they are all concerned about me. They want to take care of me now and to know that I'm going to be okay. I've truly been touched by their outpouring of support."
Falke says that doctors who experience serious illness get a taste of what patients go through. She feels it's helpful to know where patients are coming from in terms of the fear, vulnerability and actual physical pain. "For now," Falke smiles, "I've had more than my share of experience, but I still maintain that it's good for doctors to be on the other side every once in awhile."
Both Falke and Levey say the donation has brought them closer together and given them hope for their own future. They've always been involved with the National Kidney Foundation, but now they're thinking about participating in more of the patient programs, such as the Kidney Walk and possibly even competing in NKF's Olympic-style U.S. Transplant Games down the road.