Kidney Donors Link to Save Loved Ones continued

How it worked

Some matching networks, such as the one Rochester joined, prefer that the donors travel to the recipient's city for surgery. Others, such as the National Kidney Registry, send the kidneys, unaccompanied, on ice in specially labeled white cardboard boxes on commercial flights. "They basically go in with the luggage," Veale said of the precious cargo. Jeananne Thomas chose to travel to Los Angeles to recover near her brother. Their parents, Merrillan and Woody Thomas of South Bristol, Ontario County, went too, to help take care of both of them. Merrillan Thomas said she was full of admiration "for Jeananne's courage and willingness to go through the physical pain and disruption of her life that the transplant operation entailed in order to give such an incredible gift to her brother." Living donors must pass lots of tests. "Their kidneys transplant better than cadaveric kidneys," said Marroquin.

Marroquin said live donors can live fine with just one kidney. If illness or injury does hurt a donor's remaining kidney, he or she moves to the top of the list of people needing a kidney transplant, under guidelines set by the United Network for Organ Sharing, the federally run program that regulates all transplant programs in the country.

Jeananne Thomas' minimally invasive surgery May 4 required five tiny incisions in the lower abdomen wall to insert instruments and camera equipment to see, dissect, clip and staple. Her freed right kidney - about the size of a fist - was then removed through a three-inch lower incision. She was in the hospital overnight and in pain for about a week. Today she still has some twinges, but her energy level is almost back to normal. She needed three weeks off work to recover, during which she got short- term disability pay. She's gradually returning to full days as human resources and accounting operations manager at Eastman School of Music. She said she's glad she donated a kidney, "because my brother got his life back, and somebody else did too. To me, the whole chain process is even cooler because I even helped two people." Murray Thomas was in the hospital for four days and then had to recover at home for two months, so he's just starting to experience new freedoms. He was cleared to return to his job at a book store this week. He said his sister's surgery seemed worse in terms of pain."I'm very proud of her, very happy and kind of amazed that she did it," said Murray Thomas, who's 52 and is also a poet and writer. "I do feel physically so much better." During the years of dialysis, he never felt good, he said. "Doing the laundry would wear me out for the rest of the day."

Paying for it

Hoping for a transplant was like playing the lottery but only having the same numbers to play each time, he said. The donor chain option is a whole new lottery with many more chances to win, as long as you have a healthy pal willing to share. Murray Thomas wishes that people who wouldn't consider being a living donor would at least sign up to be a willing organ donor upon death. Kidney transplant chains continue to evolve. A disagreement between hospitals over payment called a disappointing halt to the Thomas' chain when their surgeries were originally scheduled before Christmas 2009. "The transplant hospitals in the National Kidney Registry have since hashed out a financial agreement," Veale said. "Health insurance plans typically cover kidney transplants and the recipient's plan pays for the live donor's surgery. But insurers don't all cover the donor's required pre-transplant testing, which costs $3,000 to $5,000, or travel," said Reece, of the Ohio-based match program. "Transplant centers and private insurers don't want to pay for testing incompatible donors who might not end up donating to one of their patients."

Reece's Alliance is trying to convince the federal government - the biggest payer of dialysis and transplant services since people with permanent kidney failure are eligible for Medicare - to automatically pay for donor evaluations. "A transplant saves more than $200,000 per patient over five years, compared to the cost of dialysis," said Reece.

Murray Thomas, now free of dialysis, hopes to have another book of poetry published next year and to travel for poetry readings. Now he has the flexibility to get in the car and go wherever, without needing dialysis appointments lined up every two days: "I'm looking forward to hitting the road somewhere."Perhaps eventually one destination will be the Chicago area - to meet the woman who provided his healthy kidney. He hasn't yet learned her name, but he's been told that she's interested in talking once the transplant organizations finalize permissions and put them in touch.