January 7, 2006
Facing up to the fact that you need a kidney transplant is daunting enough, but knowing you have to somehow raise $150,000 — $30,000 just to get on the waiting list for a donated organ — is even more daunting. Especially in times like these.
“My kidneys picked a bad time to give out,” said Barbara Mann, of Tygh Valley, “with all that’s been happening; Katrina and all that. I know people get tired of getting hit up all the time for donations.”
She has been fund-raising since June 2005. So far she has raised $12,080 of the initial $30,000 she needs. She hopes to raise the rest of it soon because it can take two or three years on the waiting list before a suitable kidney becomes available.
In the meantime, she goes through dialysis treatment twice a week at Providence Hood River Memorial Hospital’s Yasui Dialysis Center. Each treatment takes about three and a half hours. She also works full time at Mid Columbia Medical Center.
“I feel like I’m lucky I can still work,” Mann said, as she lay in a corner bed of the new Yasui Center, connected to the dialysis machine. “A lot of the people in here don’t work.”
Fund raising has taken several forms. One of her friends has been making bead bracelets as a fund-raiser, and at $20 apiece they have brought $600 so far. But at the moment they have all been sold and Mann is unsure how soon more will be available.
The same friend made a turquoise and malachite necklace and earrings set, valued at $75, which will be raffled off in a drawing Jan. 14. (Tickets, $1, are available at Klindt’s Booksellers and Columbia Gorge Donut Company in The Dalles, and at Waucoma Bookstore and Pass-Times in Hood River.)
A fellow hospital employee, who wishes to remain anonymous, has donated a diamond and ruby ring valued at $1,165 for another raffle, tentatively set for Valentine’s Day. Tickets, $1, are currently only available at Mid Columbia Medical Center, but will be sold later in other locations in Hood River and The Dalles. Call Celeste Minnis at (541) 296-7288 for more information.
But most of the funds raised so far have been raised through the Northwest Transplant Assistance Fund (NTAF), a nonprofit organization dedicated to making transplants possible for those who need them.
NTAF provides both tax-deductibility and fiscal accountability to her contributors, who can be sure that funds contributed will be used only to pay or reimburse medically related expenses.
Fund-raising is going to have to become a way of life, because after the transplant she will have three years to raise the remaining $120,000.
Her insurance will cover the operation but not follow-up costs such as the expensive anti-rejection drug she will need to take for the rest of her life.
Mann was born with kidney disease but didn’t need treatment until her late 20s, when her kidneys stopped functioning. She spent a month in OHSU in 1987 and another three and a half months in her brother’s care before steroid medication helped her kidneys function on her own in 1988. And they did very well until a little over a year ago.
She began her dialysis treatments in November 2004.
“I balked and balked until I couldn’t function anymore, and then I had to start treatment,” she said. “This is not where I want to be. I want to be productive, I want to contribute.”
Mann also knows that not just the quality, but the length of her life depends on the transplant. According to the 2003 U.S. Renal Data System report, expected remaining lifetimes for dialysis patients are only one-third to one-sixth those of the general population.
Finding a living donor would be the best answer, and the natural place to look is one’s own family, but Mann’s parents are deceased and she has no children; and of her three brothers, only one is a match — and though he has offered to be a donor, it’s uncertain whether his health would permit it.
The donor needs to be O positive or B negative. Mann said she knows it’s too much to hope for, that a stranger would donate a kidney. So she wants to get on the waiting list as soon as possible.
“I keep hoping that this will be my year — that I can raise the money,” she said.