I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on October 15, 2009, 10:28:34 AM
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Posted on Thu, Oct. 08, 2009
A determined mom gets a transplant center to change its rules
By JOSEPHINE MARCOTTY
Star Tribune (Minneapolis)
Two years ago Kelly Lawson was living a mother's nightmare. Her infant son's kidney transplant had failed, and he was growing up far from home, hooked to a dialysis machine.
She was driven by one thought: "I can't sit here and watch my son die in front of my eyes." She became a mom with a mission - finding him a living kidney donor.
Her son, Dominik, is now a thriving 4-year-old, and she is a bit of a legend at the University of Minnesota Medical Center-Fairview.
In a little more than a year, the family's story, broadcast by e-mail and news reports, inspired about 200 people to call on Dominik's behalf - far more inquiries than the U has ever received for a kidney patient.
Because of Lawson, the university hospital is now joining the growing number of transplant centers that are changing their rules so that they can provide advice to patients on how to find and approach donors. It is a significant departure from the long-held conviction that providing such information is unethical because it might be perceived as soliciting donors.
Lawson, 39, an emergency room nurse from Taconite, Minn., says it's about time.
"There was nothing at the hospital," she said. "It leaves you feeling very, very helpless."
Hospital officials say that in part they are acting in self-defense. Patients are becoming savvier and more assertive about finding donors. Educating them up front will help reduce the volume of calls and screenings involving volunteers who won't or couldn't be donors anyway. But it is also a recognition that patients and would-be donors need help that transplant centers are uniquely able to provide.
"If you are soliciting donors, this is how to do it," said Cathy Garvey, director of the university hospital's living donor program. "And tell us before you go on TV, please. It causes havoc on our end."
Dominik was born without functioning kidneys. Lawson gave him one of hers when he was 20 months old and just big enough to tolerate the surgery. But seven weeks after the transplant, he got an infection and his body rejected the organ.
Doctors told Lawson that only 3 percent of the population would be a match. Dominik was at the top of the list for a deceased-donor kidney, but he would most likely die before he got one. A living donor was his best chance.
Lawson didn't know where to begin.
"I thought, 'I need to contact the media,' " she said. "If they see my boy's beautiful face ... "
She began sending e-mail to television stations and newspapers around the Twin Cities and northern Minnesota. She also got some help from the media experts at Fairview Health Services, which owns the university's Amplatz Children's Hospital.
She succeeded beyond anyone's expectations. TV and radio stations in the Twin Cities and northern Minnesota all ran stories about Dominik. At times the university's transplant office was so overwhelmed they couldn't return every call.
"I would be livid," Lawson recalled. "I'd say: 'You have to call back every single person. They are not going to call a second time.' "
Then Lawson got lucky. ABC News wanted a patient to illustrate a national story about living kidney donation. In the fall of 2007, Dominik's sweet smile and golden curls were all over the national evening news.
In California, 20-year-old Mary Cousineau saw the program. She had met Kelly and Dominik at the university's Ronald McDonald house while her little brother was getting a bone marrow transplant. He died just two weeks before ABC broadcast Dominik's story.
As she watched, Cousineau for the first time understood what Kelly Lawson was facing - and what she needed. A kidney donor.
She immediately called Minnesota. At Lawson's urging, Cousineau waited several months while she grieved the death of her brother. But in early 2008 she saw Dominik again in the dialysis unit at university hospital. She turned around and went straight to the transplant center for testing.
She was among the 3 percent.
http://www.kansas.com/living/family/story/1003988.html