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July 21, 2008

LifeSharers promotes give, take in organ donations

Valley woman who needs kidney joins nonprofit network

By Gina Morton

Kathy Hill, of Williamsport, has polycystic kidney disease, which causes cysts to fill her kidneys. “They can’t drain,” Hill said of her kidneys, “and over time, they get bigger and bigger. The cysts kill out the normal tissue.”

As a result, she requires daily dialysis, and for more than a year, has waited for a transplant.

Joining a free program called LifeSharers may get her one step closer to getting a transplant. Members of LifeSharers, a national network of organ donors, not only promise to donate their organs upon their deaths but fellow members receive first access to the organs.

“I wasn’t aware of LifeSharers,” she said, “but heard of it from a friend, so I went online and signed up. It is one more chance.”

There are more than 11,500 members nationwide, 337 in Pennsylvania alone. Of those members, more than 70 are on the LifeSharers waiting list for an organ, and Hill is one of them.

LifeSharers members have access to organs that otherwise may not have been available to them, and as the LifeSharers network grows, it is hoped that more and more organs may become available to members.

Dave Undis, founder and executive director of the program, said it began in May 2002.

“I just kept seeing all these articles about people dying, waiting for organ transplants, how low organ donation rates were, how (people) are unwilling to donate organs when they died,” he said. “I saw a chance to save lives by doing things differently.”

Undis said about half of the organs transplanted in the United States go to people that are not registered as donors themselves, which doesn’t seem fair.

“Only 50 percent of the country agreed to donate when they die, yet those unwilling to donate are treated exactly the same,” he said.

So he created LifeSharers, a nonprofit group, creating an incentive to become a donor.

“As long as you give organs to people who are not willing to donate their own,” he said, “there is a big shortage. If you tell people we’re going to give organs to donors first and put nondonors at the back of the line, more will donate. It’s fair, and you are creating an incentive.”

LifeSharers is free, and there is no age limit to join. Minor children can be enrolled by their parents, and no one is excluded due to pre-existing medical conditions.

“No one is too old,” Undis said. “People would rather live with an old organ than die waiting for a young one.”

He added many people additionally think because they have a disease they cannot donate, but that’s not true. “Surgeons keep changing the definition of what you can transplant,” he said. “You can’t tell today if it will be of use to anyone when you die in the future.”

An example, he said, is patients who are HIV positive. Those patients could donate their organs to other HIV positive patients.

Patients with cancer can donate. The organ can be treated for cancer and then transplanted afterward.

No one should think they are too sick or too old to be a donor, he said.

There are almost 100,000 people on the transplant waiting list, Undis said, and more then half of those will die waiting.

“Americans are burying or cremating 20,000 organs every year,” he said. “They can save lives and are being thrown away. We are trying to stop that. If you donate your organs after you are dead and can’t use them anymore, you increase the chance of getting one if you need it.”

All LifeSharers members are given an organ donor card and receive letters to share with their family and doctors explaining what they want to have happen. There also is information to give to their health-care providers.

Hill still works full time and does peritoneal dialysis four times a day at her home — before work, at lunch, after supper and before bed. Each process takes about 30 minutes and ultimately filter out the toxins from her body that the kidneys no longer have the ability to do.

“It’s tiring by the end of the week,” she said, “because all the good stuff is out of me as well as the bad.”

She is required to be on a special diet that restricts her from having several foods, including dairy, chocolate, caramel and nuts.

Hill also is working through the Geisinger transplant program, hoping for a chance to receive a live donor organ as well.

For information on LifeSharers, visit www.lifesharers.org or call toll-free to (888) ORGAN88.

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