Bellingham woman works up courage to seek live kidney donorBy MARY LANE GALLAGHER
THE BELLINGHAM HERALD
September 23, 2007
BELLINGHAM, Wash. -- Almost everyone has more than enough of the one thing Michelle Nguyen desperately needs. But what she needs is a kidney, and it's not that easy to ask for one.
Nguyen, a 24-year-old diabetic whose kidneys failed two years ago, tried asking members of her church recently, but her voice failed her. She has a Web site that tells her story in passionate colors and flashing letters, but standing in front of her congregation at Sacred Heart in Fairhaven, she suddenly couldn't find the words.
"I'm a really emotional person and I'm really shy," Nguyen said. "So asking is really hard for me. Father (Qui-Thac Nguyen) asked for me and told them what my situation was."
Nguyen, a Sehome High School graduate, is one of at least 21 area residents and more than 73,000 people nationwide who need a kidney transplant. Some will receive a donated kidney from someone who has died. But recipients usually do better with kidneys from living donors, and the sooner they can get a transplant, the better.
So many people whose future depends on a kidney transplant try to find one themselves from a living donor. Family and close friends are most likely candidates, but some people hope their stories will inspire a donation by someone they dont already know.
Social workers help people waiting for transplants think about how to go about asking, said Lynn Rothman, a social worker on the transplant team at Virginia Mason Medical Center in Seattle.
"It's a challenging topic," she said. "We have patients who absolutely refuse to consider that as an option, simply because they will not ask anyone."
Few people ask outright for someones kidney, said Judy Perry, a social worker at the Mt. Baker Kidney Center, where 21 people now get dialysis treatment and are waiting for kidneys. Usually, people simply talk about how theyre on dialysis because their kidneys have failed, or family members spread the word.
"The dance is done very civilly," Perry said.
But intentions can sometimes get lost in the politeness, said Jeff Harder, a social worker for the kidney transplant program at the University of Washington Medical Center.
"What some research has shown is that a lot of times the family and loved ones who want to donate are sitting back, waiting for the person to ask, and the person who needs the kidney is sitting back, waiting for the person to offer," Harder said. "Each one is afraid to approach the other."
The exchange also unearths deep feelings about giving and receiving between generations. Some people simply will not ask their children, Rothman said.
"We dont think about asking our children for something, let alone an organ," she said.
Husbands and wives are also sometimes reluctant to accept each other's organs, Perry said. One local husband relented only after his wife insisted for months that she wanted to donate.
"It's an overwhelmingly generous thing for (donors) to do," Perry said. "(Recipients) feel concern for the health of the donor. They worry theyre somehow going to do them harm. I think they may worry somehow they're not going to take as good of care of it as they should."
Nguyen's immediate family would like to donate. Her older brother's not a match, and her two younger siblings are too young, she said. Her mother is a diabetic, so she can't donate a kidney, and her father is too old.
But her father, Ty Nguyen, who is retired from Icicle Seafoods and Trans-Ocean Products, did tell his daughter's story to family in Vietnam, and many relatives underwent tests to see if they could give a kidney to Michelle, whose B-positive blood type means her body is particularly choosy.
Unlike other organs like livers and hearts, people can survive for years without a kidney with the help of dialysis. But dialysis can exacerbate other conditions that can jeopardize a persons health even more. Nguyen, for example, said she was told in June that her health had deteriorated so that she really needed to get a transplant within six months.
Telling the story lets people know not only about the need of one particular person but of the need for kidneys in general, said Dr. Connie Davis, medical director of the kidney and pancreas transplant program at UW.
"It's not wrong at all to ask. People need to ask," Davis said. "But you can't push. It has to be a freely given thing."
Some have tried more aggressive steps to find a donor outside their circle of friends and family. One man in Texas advertised on a billboard. And on one Web site, Matching Donors.com, people can post personal information about themselves in hopes of finding a donor.
Davis is a bit squeamish about the Web site, worrying such measures bring an unfair advantage to people with enough financial resources to allow them to get on the Internet and post their profile on the Web site.
On the other hand, people who find donors through such means - Virginia Mason recently transplanted a kidney that was found through Matching Donors.com - are taken off the list of people waiting for kidneys from deceased people, Davis said. That means even people without the ability to broadcast their story on billboards and Web sites might benefit if people with resources get kidneys more quickly.
But donations are really more likely to come from the recipients' close circle of friends and family, said Mary Mason, a social worker and donor advocate at Virginia Mason. People who volunteer to donate to someone they don't know meet intense scrutiny at transplant centers, she said, where social workers want to make sure they're not under any financial incentive to donate, or have any other strange motivation.
Michelle's search for a kidney has turned up a cousin in Vietnam whose blood type would allow him to donate, but hell need further testing. He recently sent some forms to Michelle's transplant physicians at UW and is waiting to hear if he could be a candidate. If so, she said, work begins to bring him here, such as getting him a visa to enter the U.S.
But if he can't be a donor, Michelle said she won't give up. She's working up her courage to tell her story at Assumption Catholic Church, but it's a daunting prospect.
"Assumption is twice as big as Sacred Heart," she said.
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On the Web:
Michelle Nguyens Web site:
http://www.ncplus.net/swtvietbebe/index.htmlUnited Network for Organ Sharing:
http://www.transplantliving.orghttp://seattlepi.nwsource.com/local/6420AP_WA_Kidney_Transplant.html
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