Wait nearly over for transplant hopeful (first transplant lasted 37 years!)

Wait nearly over for transplant hopeful

By Rob Haneisen/Daily News staff

Sunday, January 21, 2007 - Updated: 08:29 PM EST

He only has 10 more days of waiting for a kidney transplant from a woman he has never met, but Gary Leonard should be used to waiting.

As a child, he waited to grow old enough and strong enough to attempt a groundbreaking kidney transplant using his mother's organ in 1970.

After that success, and several years of good health, it had to be in the back of his mind that he was living on borrowed time and that his mother's kidney would eventually fail.

It took nearly 37 years for that to happen and a new round of waiting began when the 48-year-old Wayland man went public last spring with a need for a kidney donor.

He waited all summer, endured a few false starts until Charnan Bray, a fellow Wayland resident he never met, volunteered to give Leonard one of her kidneys and was approved as a donor in October.

But more waiting was in store for both Bray and Leonard. He needed minor surgery near his mother's transplanted kidney, which was not supposed to affect the Nov. 28 transplant date. It did. So surgeons waited for swelling to subside and finally a date of Jan. 30 at Massachusetts General Hospital was set.

"I'm glad it's finally coming," said Leonard.

According to statistics provided by the United Network on Organ Sharing compiled through the UCLA Immunogenetics Center, Leonard is one of only 12 people in the country who still have a kidney donated from a family member in 1970. There are only 35 other people with older transplanted kidneys, putting Leonard's mother's transplanted kidney in the top 50 for oldest surviving transplanted organs.

In the months of waiting, his health has only slightly declined. He has not needed dialysis - a life-preserving procedure most people in kidney failure need three times a week to remove the toxins from the body normally excreted in urine. Though he does feel tired, is losing weight he doesn't need to lose, and is on a diet that omits certain foods, Leonard knows he is lucky that Bray came forward and his surgery is not an immediate matter of life and death.

For her part, Bray is anxious to get on the operating table.

"It's been a long process, I am very ready to have it done and over," said Bray.

A few things could still stand in the way of the operation taking place. The most likely scenario is Leonard or Bray being sick, even with a cold, on the day of the surgery. The surgeon could also get sick. There could also be a need for another patient's emergency surgery which would bump Leonard's place.

Both families are doing their best to keep Bray and Leonard healthy but during this time of year, flu and colds are difficult to avoid completely.

"Everyone in our house is sick, so I'm trying not to get sick," Bray said. "Cindy (Gary Leonard's wife) said she'd like to keep us both in a bubble."

Bray said being a donor has been a test in patience. She wished she would have known about the amount of testing required and how long all those tests and results could take.

"I can understand why a lot of donors back out," she said. "But I'm totally committed to the process at this point but there was a point at the beginning where I thought about dropping out."

Bray's main complaint was that because she is unrelated to Leonard, the hospital could give her very little information about Leonard's status for a transplant.

"I felt left in the dark," she said. "I wasn't told at the beginning all the tests I would go through. Had I known that from the beginning I could have better known what I was getting into.

"It was apparent to me over this long process that there is no way to handle some issues of unrelated donors."

In fact, a vast majority of live kidney transplants are between kin or close friends. Donations from strangers are rare. In Leonard and Bray's case, the hospital preferred the two not meet until after the surgery to prevent any possible ethical concerns.

Nationwide, medical ethicists are concerned about patients seeking altruistic donors because of concerns about illegal payments, among other issues. Some transplant centers have refused to offer transplants to those who find a living donor outside of immediate friends and family.

Bray, who first learned about Leonard's need by a story in the Daily News, even had to persuade her own family members to be supportive of her decision.

Over time, and as she educated friends, family and herself about the low risk of the surgery and its negligible effects on the donor's health, they supported her decision. Some of her friends are even considering being donors themselves.

Awareness about the safety of kidney transplants, a surgery that was first successful 52 years ago in Boston, is something Bray hopes will increase.

A bill filed last week by state Sen. Karen Spilka, D-Ashland, might help with that as well. The Gift of Life Act would provide a $10,000 tax credit for life-saving organ donors to cover any expenses not covered by the recipient's insurance. If the bill eventually passes into law, Massachusetts would become the 11th state to provide a tax credit to organ donors.

Most donors go home less than a week after the surgery and have no long term health problems related to the operation. People are born with two kidneys but can live with only one.

Though most believe that financial incentive won't motivate more donors, having a bill before the legislature will mean more interest in the subject and more chances to educate the public about the procedure.

"The more people that get an opportunity to talk about this the more comfortable they are talking about it," said Framingham's Krystine Orr last month. Orr had a successful transplant Thursday, receiving a kidney from her cousin's husband.

(Rob Haneisen can be reached at rhaneis@cnc.com or 508-626-3882.)

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