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Monday, May 14, 2007

I have a love affair with life: A heart transplant patient advocate

He’s feeling pretty good these days, all things considered, he says. Stanley Epstein, now 80, lives in New Jersey, six years after receiving a new heart from a 24-year old donor. Earlier, he had had two major heart attacks and two three-artery bypasses; then his doctors told him they weren’t working. But most hospitals at the time wouldn’t consider transplants for people over 65.

“I went into the computer and searched for transplant centers that would take people over 65,” he says. Three accepted him; he chose one—the University of California at San Diego. There, he had the surgery, and overcame a serious complication with post-transplantation medication that almost destroyed his kidneys. Then he traveled the long road to recovery.

He had benefited from a support group of people awaiting transplants. They would meet regularly to encourage each other. The group also gave members a duty that kept them from dwelling on their own poor health. Stanley was especially moved by one group member who died awaiting a heart and lung transplant. “After she passed away, I was determined to find a way that I could direct my energy in promoting transplants,” he explains. Now he is coordinating a support group in New Jersey, and volunteering with the New Jersey Organ and Tissue Sharing Network, a nonprofit organization that helps acquire and place donated organs.

“I have a love affair with life, and that’s the one major thing in forming these groups - to convey that love affair [to other transplant patients].”

Advice: Study what Stanley has done: he searched for transplant centers. He selected the best of several. He participated in a support group. He has a powerful positive attitude. He is helping other patients through existing organizations. And he is creating new resources for other patients.

Read another story of our patient advocate heroes, or read TRISTAN J. SCHWEIGER’s source story.

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