Woman educates people on organ donation

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Published May 30, 2009 11:31 pm - Elysian woman started Faces of Life to educate people on organ and tissue donation

Woman educates people on organ donation

Nonprofit focuses on facts and families

By Jean Lundquist
Special to The Free Press


Anne Wolff knows all about the importance of organ donation. The 45-year-old woman from Elysian has received two organ transplants. Her kidney came from a living donor — a cousin. Her pancreas came from a deceased donor — an unknown 15-year-old boy who died from a head injury.

 
Her experience is what led her to sit down and write a screenplay, then another and another, about the story of donations and transplants. She also founded a nonprofit organization called Faces of Life.

Wolff describes the organization using the mission statement: “The Faces of Life Project is a not-for-profit initiative, which uses the elements of art to promote discussion of organ and tissue donation and transplantation. Through theater, storytelling, visual arts and other art forms, the Faces of Life Project hopes to create opportunities to understand and consider issues relating to organ and tissue donation and transplantation.”

Kathryn Block is an organ donor and a member of the board of directors for Faces of Life. She hopes working with the organization will educate people about organ donation.

“I want people to know how easy it is to just check that little box on your driver’s license,” she said.

Both women say they don’t want to convince anyone to be an organ donor, but just to know the facts about it. They also want to be sure the donor family is not forgotten in the process.

Because of the impact of organ donation on Wolff’s life — and others she has met who are either organ, tissue or blood donors or transplant recipients — Wolff needed an outlet and a way to educate others about the possibilities.

The road to receiving an organ transplant is a complex one, she said. Wolff was interviewed at length by the transplant surgeon as an initial step. Following that interview, a pre-transplant coordinator was the next to see and talk with her about all the implications of receiving a transplant. The information gathered in the initial interviews is then forwarded to a Transplant Board, which makes the final decision about who gets placed on the list.

“It’s neither the sickest person nor the healthiest person who is chosen for a transplant,” Wolff explained. “It’s whoever is the best (tissue) match.”

Wolff has had diabetes since she was 20. Her brother, John, was diagnosed with the disease when he was 18. Her brother, Steve, died of complications of the disease when he was 19.

Similar to the route the disease took with Steve, Wolff was ravaged by diabetes. Her kidneys were attacked, and she was on dialysis. She had pain from neuropathy so severe she was unable to walk.

If she had been able to get a pancreas transplant sooner, a doctor told her, she perhaps could have been able to keep her kidneys healthy longer. The pancreas is the organ that produces insulin, essential for controlling blood sugar levels.

Unfortunately, most insurance companies won’t cover a pancreas transplant until there is kidney failure, according to Wolff.

When discussing her condition with a cousin, including the fact she was on dialysis, her cousin asked if there was anything she could do. Wolff replied she could give her a kidney.

“We both laughed,” Wolff said. But later, it came up again, and the cousin turned out to be a match.

http://www.mankatofreepress.com/features/local_story_151003057.html?keyword=topstory