Support group forming to address donor issues

Posted: Wednesday, September 15, 2004

For someone waiting for an organ transplant, each day brings a unique set of challenges and obstacles unfamiliar to most people.

Judy Downs and her husband, Bob, face these challenges every day. Bob was diagnosed with end stage kidney disease more than a year ago. Since then, the couple has experienced emotions Judy said she was unprepared to deal with when the diagnosis was first made.

"For us it's been a roller coaster," she said during an interview earlier this month.

After the couple got the bad news, Bob had to go on kidney dialysis, and the search began immediately to find a donor. But with thousands of people across the country waiting for a new kidney, that wait can be long and painful.

"When your first hear you need a transplant or have to go on dialysis, it really impacts your whole world," Judy said.

Because the process of waiting for an organ and fighting the disease can be so trying, she said she felt something needed to be done -- not only for her and Bob, but for others facing similar circumstances. That's when she decided to form a support group for people like her and Bob who are having to deal with a situation they may never have imagined.

"I'm kind of picturing it as a support group and also bringing in professionals that might want to address specific aspects of kidney disease," Judy said.

She wants to bring people with kidney disease, as well as their families and spouses, together in the area to work together to deal with issues ranging from insurance to the long wait for a donation.

And that wait can be long. According to Erin Hall Meade, community outreach coordinator with Life Alaska donor services, kidneys are the most sought-after organ in the United States. And for someone like Bob, whose blood type, O-positive, is the most common, that can mean a wait of up to five years.

"You're going to wait a long time," Meade said. "It's really a bad situation."

Meade said groups like Life Alaska work to coordinate organ donation programs across the nation. Not only do they work to match donors and patients, she said her group also conducts educational outreach programs and works with government to push through more donation-friendly legislation.

Those efforts paid off last year, when the Alaska Legislature passed House Bill 337, which made it easier for the Division of Motor Vehicles to facilitate the process of people becoming organ donors. Now, she said, when someone gets their license renewed, they are asked if they want to be a donor. If they say yes, the information is automatically entered into a state database.

"Since there's a five-year turnover on license renewals, everyone in Alaska will be asked in the next five years," she said.

That's a big deal for the nearly 1,000 people in the Pacific Northwest waiting for a kidney. Not only that, Meade said there are more than 86,000 people nationwide who are waiting by the phone to hear word about a potential life-saving donation.

Judy Downs said the process of waiting for an organ can be trying. However, with the support of family and friends, the process can be made easier. She said the support Bob has gotten from his family, and the community as a whole, has been overwhelming.

"We've been blown away by people coming up to us and saying, 'Bob needs a kidney? I'll donate,'" she said.

When Bob found out he needed a kidney, his two brothers went through the process of being tested as potential donors, but neither met the stringent criteria needed to donate.

Because donation from a live donor is a risk to both the patient and the person making the donation, it's rare that someone is ever actually able to donate. So far, that's been the case in Bob's situation, as no one who has come forward has been a perfect donor candidate.

Still, Judy said she's hopeful that someone will come forward with the right combination of blood type and other health factors to make them a viable donor. Until then, however, she and Bob will continue to wait by the phone to hear the life-saving news that a kidney has been found.

"If we get a call from the University of Washington (the hospital where the donation would take place), we have an hour to get back to them," she said.

That means her and Bob are always available to answer their cell phones.

But that kind of waiting can be stressful. That's why Judy wants to start the support group, which she says will be open to anyone who wants to come and discuss their problems or share advice about living with a life-threatening disease.

"There are a lot of different ways people can get support," she said. "Just sharing things can be a very good thing. The more information you have, the better off you are."

Judy said anyone wishing to learn more about the kidney disease support group may call her at 260-1903.

"Some people aren't sure where to turn," she said. "They really need the support of others in similar situations."

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