Sect helps men survive to tell tale of kidney disease

Larry Rosenfield and Brian Wilson have lived in Aspen for a collective 70 years. But they didn’t know each other until a life-threatening disease brought them together.

Now they’re linked by a strong bond and want to tell their story in the hope that it helps people who may be facing the same medical issue.

Rosenfield and Wilson both had kidney disease. Had they been diagnosed a few decades ago, they would have had a 50 percent chance of surviving. Both went on dialysis, a procedure that involves being hooked up to a machine five hours a day, three days a week. And both felt like they were on their own about their options until a chain of events brought first Rosenfield then Wilson - through Rosenfield - into contact with a small Christian sect whose members are donating healthy kidneys to save lives.

“The hook was the Aspen community,” said Wilson, who was introduced to Rosenfield through a mutual friend. “If I was in L.A. I wouldn’t have met someone like Larry. Three people in Aspen were willing to give me a kidney. People here really pull for each other.”

Wilson, 60, had kidney failure just a year ago. He was told that his options for a new kidney were “a cadaver, a family member, or getting on a list” that would take an estimated three to five years to find a match. There were no matches in Wilson’s family, and he didn’t want to wait, helplessly, for years.

“I was in the dark,” he said. “Then Larry comes into my life, and he gives me hope. He was my cheerleader; and he educated me.”

Rosenfield connected Wilson with the Jesus Christians, a group of Christians whose goal is to emulate the way Jesus lived. Rosenfield had received a kidney from a member living in England, and was acting as a liaison between other members who wanted to donate and potential recipients.

A match was found, and on Aug. 23, Wilson received his new (also British) kidney at the University of Colorado-Boulder hospital (the same hospital Aspenite and Olympian Chris Klug received his liver transplant). Largely because of the efforts of a total stranger and someone he had just gotten to know a few months before, Wilson was healthy again.

“It was difficult for me because it was a stranger, and it was a stranger doing the most selfless thing for me,” he said.

Wilson is the sixth person Rosenfield helped get a new kidney - in November, a teenager in Grand Junction will be the seventh.

Rosenfield, now a crusader for kidney transplants, received his diagnosis in March 2000 at age 58. Congenital kidney defects are common in his family - both his father and grandmother died from complications from the hereditary condition before their senior years.

People with kidney disease have poorly functioning kidneys and thus, a high level of creatinine - “the amount of junk floating around in your blood,” Rosenfield said. Normal levels range from 0.05 to 1.3. - Rosenfield’s creatinine level was 19. Dialysis brings levels down to about 10, but kidney transplants are often the most effective way to fight the disease.

Because of his blood type, Rosenfield was told he would have to wait five years or more for a new kidney. Like Wilson, he chose to take his destiny into his own hands. His sister found out about the Jesus Christians through an Internet search, and one of the sect’s members promptly offered Rosenfield her kidney. It took some time to arrange the operation, because most hospitals refuse to perform “good Samaritan” transplants - transplants from a total stranger - for fear that organs are being bought and sold.

Rosenfield finally found a hospital to perform the operation and met his donor as she stepped off a plane in Madison, Wis., just days before the procedure in July 2002. No money was exchanged, though he helped pay for some of her travel expenses.

The successful operation changed Rosenfield in more than one way. Because of the dearth of available information, he decided to act as a liaison and information source for others suffering from kidney disease.

“Don’t you think what happened to me is a miracle?” he said. “Someone cared enough to do it for me. I have the time and the wherewithal, so why not?”

In Colorado, 1,500 people are on the waiting list for organs, and each year more than 6,000 Americans die from lack of available organs. The worldwide network of kidney recipients is a close one, and “the way it works is on a personal, word-of-mouth level,” Wilson said.

Rosenfield and Wilson hope their story - their experiences and the knowledge they’ve gained - will pay off for others diagnosed with kidney disease. Getting in the loop, they say, may make all the difference in the world.

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