Lifegiving exchange: four participate in kidney transplants

[okarol]

Lifegiving exchange: four participate in kidney transplants

Saturday, December 25, 2010 9:31 AM EST

By Susan Corica
Staff Writer

BRISTOL — Two people are alive and well today thanks to the generosity of two strangers.

All four participated in a kidney transplant exchange Dec. 2 at Yale-New Haven Hospital. It all started with a mother willing to do anything to spare her daughter from dialysis.

At first, Laura DiMauro of Bristol was devastated that she wasn’t compatible to donate a kidney to her daughter, Vanessa Pannuto of Burlington. Then she learned that by donating to a stranger, her daughter would be moved to the top of the list to receive a kidney from another donor.
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Pannuto has a rare genetic condition, Alagille syndrome, that can cause scarring of the heart, liver or kidneys. “In my case it was my kidneys,” she said. “When they scar they don’t work like they’re supposed to, and so eventually you either go on dialysis or need a transplant.”

She was diagnosed in 2007 after her twin son and daughter were born. Her son, Dylan, was affected by Alagille right from the start, leading doctors to trace the disease to her.

At first, she was actually relieved to have a name for her condition. “At one point, I had gone to a kidney specialist that basically asked me if I had been a heroin addict. That was the only way that they could explain what was going on with my kidneys, so it was very comforting at least to know what it really was.”

Relief quickly disappeared. Dylan was severely ill. Circumstances prevented him from getting the liver transplant he needed and in June of 2009, at the age of 22 months, he died.

The little boy’s mother was getting sicker, too. Last January, she was told she needed to start exploring a kidney transplant for herself or face dialysis to survive.

“My mom was immediately determined to give me a kidney,” she said. “But she will tell you that it was a blessing in disguise that she couldn’t because I was able to benefit by her donating a kidney. The man who was the recipient of her kidney obviously benefited as well.”

“Fortunately we all stayed healthy till it was time for surgery, because that was a huge concern. My mom’s recipient had been on dialysis for 10 years, and so there was definitely the potential for him to not be well enough to undergo surgery,” she explained.

All four operations were done one right after the other. Pannuto went last. “They said you all have to be there early so nobody backs out,” DiMauro noted.

“Two days later my kidney function had improved,” Pannuto said. “The doctors said the new kidney was doing exactly what it was supposed to. It was really amazing.” Now, at age 33, she is ready for a normal life again. The new kidney was implanted on the right side, so she has one fully functioning one and two barely functioning ones. But one healthy kidney is enough.

However, she does have to take anti-rejection drugs for the rest of her life, and she has to avoid crowds to minimize the risk of infection. “They do tell you transplant is a treatment and not a cure, but already I feel great. I have energy again,” she said.

She and her husband, David, have two remaining children, Evan, 6, and Dylan’s twin, Grace, now 3 – both of them healthy. “I found out that any children that my husband and I have would have a 50 percent chance of getting Alagille syndrome. Obviously now that we know that, and with my health issues, we’re done having children,” she said.

Her mother is doing well, too. Just a few weeks after the operation, “I still get tired easily, but other than that it was nothing,” said DiMauro.

“This is the first time I’ve ever had surgery. I’ve been such a fortunate person with my health, and then to have all of this out of the blue, it was pretty startling, but thank God I was healthy enough to be able to help,” she said. “We’re very hopeful for Vanessa now. I think the thing that got me more emotional than anything is not being able to help Dylan — he was such a sweetheart,” she said.

For more information about kidney exchange transplants, visit the New England Program for Kidney Exchange at www.nepke.org.

http://www.bristolpress.com/articles/2010/12/25/life/doc4d1600099cfa8008115149.txt