Ellie Edwards, a fortysomething massage therapist in Avila Beach, recently took an English class out at Cuesta to brush up on her creative writing skills. Little did she realize how one assignment would change her life.
For her final paper, Ellie decided to write about altruistic organ donation and her research took her to matchingdonors.com. She admits to being surprised by how many people on the official waiting list were dying for lack of available organs.
Compelled by the need to do something, anything, Ellie signed up as a potential living kidney donor. “I’m healthy. I have two kidneys. I could easily get by on one. Why not donate?” is how she explains her decision.
After some initial tests, Ellie was given a list of possible matches and she decided to communicate with two women; one in New Jersey and one in northern California. The New Jersey woman already had other possible donors lined up and eventually underwent successful surgery in September.
The woman in California, Kathy, was not as lucky. She had no donors lined up and, upon further testing, Ellie was ruled out from consideration. Still, some kind of connection had been made between the two women.
“I was drawn to her story,” Ellie recalls. “Here is this nurse on dialysis five days a week at home. Her graft has clotted twice. She’s in danger of losing her left arm, which means she’d have to go into the hospital for dialysis because she’s the one who pokes herself.”
Kathy eventually invited Ellie to visit and last month she flew up to McKinleyville, just south of the Oregon border. She stayed with Kathy and her husband Jim for five days out in rural redwood country, where they’ve been building their dream home for more than a decade.
“They’re good people,” Ellie says. “Jim is an engineer. He works long days and comes home to help Kathy in all aspects of the dialysis without any apparent resentment. Kathy still works at the local Hospice and the staff there all told me how much they love her and what a good person she is.”
The visit was especially emotional for Ellie. Kathy showed her the tiles she had made and installed in the bathroom, as well as the front steps, being built one stone at a time. Ellie was allowed to watch Kathy on dialysis and witness the daily struggle she must go through.
“The most poignant moment came when we looked through some old photos together. Kathy had just shared a terrible family secret with me and I held her hand in silence. Through her tears, she said, ‘I had a horrible childhood, but I’ve had a very good life. A very good life.’ Those words haunt me.”
Ellie came home to San Luis Obispo, but part of her clearly remains up north. Ask her about the impact of those five days with Kathy and Ellie talks about how lucky she feels to enjoy good health. Still, she can’t forget Kathy and the fact that the clock is ticking. If Ellie can’t donate a kidney, then she wants to find someone who can.
It may be an uphill fight. There are currently 60,000 people waiting on the national list for a kidney transplant. According to the United Network for Organ Sharing, a new name is added to the waiting list every 14 minutes.
Less than 10,000 kidneys from deceased donors become available for transplantation a year, a number that has remained constant for more than a dozen years while the demand has quadrupled.
With the enormous increase of potential recipients, the wait for a kidney transplant has stretched from about 1 year in 1988, to as much as 4 or 5 years for some. Those on the waiting list, all of whom suffer from kidney failure, are totally dependent on dialysis to survive.
Ellie plans to continue her research on matchingdonors.com and hopes to eventually give the gift of life by donating one of her kidneys. And her new friend Kathy remains on her mind constantly as Ellie talks to anyone and everyone about living organ donation.
“I really don’t want this to be about me,” Ellie insists. “I get uncomfortable and embarrassed when people focus on what I’m doing.
But when I learned the facts, including the risks, living donation became a no-brainer to me. Kathy, and people like her, are at the mercy of the rest of us.”
Oh. Ellie received an “A” on her paper. Anyone surprised?
SLO City News (November 2007)