by Elizabeth Lunt
Thomas Rivera Ley smiles broadly at the memory. “The first words I heard were: ‘Mr. Ley, your surgery is over and you are making lots of urine!’” he recalls gleefully. Nurses kept coming in to empty bags of urine, he explains, and he could not believe how often. When he was in kidney failure, his body didn’t create any, which was “convenient on long trips,” he laughs. Now, after four years of being near-tethered to a dialysis machine, he’s thrilled about the urine. It proves that his new kidney, a gift from his brother Scott, is working just fine.
Tom, who celebrated his 40th birthday in November 2006, has had diabetes since he was seven years old. He went blind when he was 17. His kidneys began to fail when he was 20, and he had his first transplant at 22. That kidney lasted nearly 14 years, then failed in 2003 because of the toxicity of the very medicine intended to keep him from rejecting the organ.
At that point, Tom sought a kidney-pancreas transplant to cure both the kidney failure and his diabetes. This involved waiting for organs from a deceased donor, and then urgent calls at all hours of the day and night. It was a long, stressful process, and none of the prospective matches actually matched. “I would prepare emotionally to have major surgery, and they would call six or eight hours later and say the cross match did not work,” Tom says. Tom decided to try for a kidney from a live donor and to worry about the pancreas later.
Tom and his wife wrote to his five siblings to see if they would consider giving him a kidney. “Asking someone to remove an organ and have major surgery [is] difficult,” he says. “We put our hearts and souls into that letter.” They explained how hard and limiting life was for Tom on mandatory dialysis: He didn’t see his family three days a week because he went directly from work to four hours of dialysis and got home very late. All five of his siblings volunteered for donor testing.
Unfortunately, willingness isn’t enough. Numerous criteria come into play when making a donor match. If blood types are compatible, the cross match is next. Blood from both people is mixed. If the prospective kidney recipient’s blood reacts badly to the donor’s blood, it’s bad news, though it’s called a positive match. A negative cross match, however, means there is no bad reaction to the donor’s blood. Finding a match for Tom was no easy task because of the complexities of his immune system. He was exposed to foreign tissue during his first round of dialysis many years ago and has a high level of antibodies in his blood stream.
Tom’s 45-year-old brother Scott wanted to help from the start. He respected Tom’s decision to try for the kidney-pancreas transplant, but when Tom turned to his family, Scott was ready. He knew that as a civilian engineer for the Air Force, and therefore a federal employee, he would get generous, paid recovery leave that would make his surgery possible. But more than anything else, he loved his brother. “I’m doing it so he can see his son grow up,” Scott declares. “He’s a great father, a great person. He would do it for me.”
Tom and Scott both have type O blood, and of the willing siblings, Scott was the best donor candidate because he also had a high number of matches on the genetic markers called antigens. The donor coordinator advanced him to the other eligibility tests. Although the transplant would be performed in Maryland, Scott’s initial testing was done in Ohio, where he lives with his wife Maureen and their two teenage children. Scott says the doctors checked him out “top to bottom.” He had a thorough physical, stress tests, X-rays, an electrocardiogram and CAT scans. They want to ensure, Scott explains, that as a donor “you have no condition that may require your kidneys to work harder in the future.” High blood pressure, diabetes, heart disease and many other conditions disallow live kidney donation, but Scott was given a clean bill of health and selected as Tom’s donor.
Sometimes when a live donor is identified, a kidney transplant can go ahead in as little time as a month. Unfortunately for Tom and Scott, they faced many delays. Over the summer of 2006, Tom’s doctors found a mass in and around his failed kidney. They postponed the surgery and Tom had weeks of testing before his doctors ruled out cancer. “It was an emotional roller coaster,” says Scott, who was waiting in Ohio.
Two months later, just days before the surgery, a routine final cross match unexpectedly came up positive. The doctors had to find a way to neutralize the antibodies that Tom’s body was creating against Scott’s tissue. They decided on a new plasma replacement therapy, but nobody was sure if the scheduled surgery would go ahead. “It was nerve-wracking,” Tom recalls, because by then Scott and his family were in Baltimore, ready to go. Days of treatment followed, the new protocol worked to reduce Tom’s antibody level, and at midnight on a Thursday, Scott and Tom learned that their surgery would proceed the next morning.
On October 27, 2006, at University of Maryland Hospital, Drs. Bartlett and Cooper finally worked their surgical magic. It had been a long six months since Scott was cleared as a donor. Things went so smoothly that Scott was out of bed and walking that same night. In fact, he even managed to make his way down the hall to Tom’s room to greet him after recovery. A few weeks afterward, they both felt well.
Scott, now home in Ohio, reports that the waiting and testing were “arduous at times,” and it took a while for the soreness in his abdomen to subside after surgery. But he doesn’t anticipate any change in his physical abilities. He says those thinking about donating an organ should not hesitate to “pick up the phone.” The donor coordinators and doctors will not allow surgery unless they are sure a person can spare the kidney and remain healthy. “It’s not a hero story,” he says. “It’s just great to have given this gift to my brother.”
Tom thinks it’s great, too. “A big burden has been lifted,” he says gratefully, and “I [am] joyful and thankful to Scott, his wife Maureen, and their children who sacrificed throughout the process to make this happen for me.” He’s savoring the foods he was forbidden during dialysis and finds it easier to keep a close eye on his diabetes. In short, Tom is enjoying his new life: home in time for dinner and no detour to the dialysis clinic.
For more information about organ donation, see www.organdonor.gov or the National Kidney Foundation site at www.kidney.org.
Elizabeth Lunt, MS, has worked in publishing and libraries for many years. She is the editor of Voice of the Diabetic and would like to hear your comments about this article or any other in the magazine. Please send Letters to the Editor to: Elizabeth Lunt, Editor, Voice of the Diabetic 1800 Johnson Street, Baltimore, MD 21230 or [email protected]