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Decision prohibits donation

So that a friend with kidney disease might live, 54-year-old Randy Warner said he happily took 25 trips to hospitals, doctors’ offices and clinics to see whether he could donate an organ.

He didn’t find at all bothersome the 17 procedures, 14 tests and at least a dozen interviews by psychiatrists, psychologists, social workers, a minister, two anesthesiologists, two surgeons and a donor coordinator. Rather, he found the experience a welcome rite of passage to an "incredible opportunity."

"I really want to donate a kidney to Tom," Warner said Tuesday. "There’s no better feeling than helping somebody."

Last week, however, Warner and Tom Roe, whose story was profiled in the Review-Journal in September, found that what they hoped and prayed for couldn’t be realized at the Mayo Clinic in Scottsdale, Ariz.

Warner was rejected as a donor.

"I just don’t understand it," said a dejected Roe, whose kidneys failed two years ago because of unmanageable hypertension.

Warner wasn’t rejected because his blood type or tissue was incompatible. Nor was it because doctors found that Warner had physical or psychological problems that would worsen after a transplant.

"I was denied for lack of follow-up care," said Warner, who lives outside Dolan Springs, Ariz., in a mobile home. "But that makes no sense because members of Tom’s family and his friends said they would stay with me if I needed it. I’ve gone to doctors all along in Dolan Springs and Kingman."

Also, for the first 30 days after the transplant procedure, he would be covered by Roe’s insurance, and Mayo would be responsible for medical after-care, said Dr. Leslie Spry, a spokesman for the National Kidney Foundation.

But Warner said he was told by a Mayo administrator by phone last week that it would be inappropriate for him to receive help from the Roe family in the form of caregiving, and that it appeared he and Roe had "a prenegotiated arrangement that would be unethical."

"I wouldn’t get any money, just a helping hand if I needed it," Warner said.

"I must admit I have not heard of such a reason for rejection" of a donor, Spry said in a phone call from Lincoln, Neb.

Lynn Closway, a spokeswoman for the Mayo Clinic, said Wednesday that for privacy reasons the clinic never comments on why a potential donor is rejected.

Roe, who had to leave his job in 2002 as a special education teacher’s assistant with the Clark County School District because of illness, seems baffled by what has happened.

"The problem is that he’s a recluse," Roe said about Warner. "He has nobody, so we were just trying to provide some people for him if he needed it. What do you do when a friend might need help? This is just depressing."

The Roe family is familiar with medical rulings by bureaucracies that some might find strange. Chris Roe, the 16-year-old son of Tom and Susan Roe, died in 1999 of cancer after their insurance company denied him experimental treatment that was his only chance for survival.

The case received national attention when the U.S. Senate discussed it in a 2001 debate on the need for a patients’ bill of rights.

Warner, an animal rights activist and self-published author who lives with his four dogs in a double-wide in the Arizona desert about 30 miles south of Hoover Dam, believes that what has happened to him and Roe should receive attention from legislators.

"There is simply no good reason not to try and give Tom a better life," he said.

Warner’s dream of bringing to Las Vegas a drum and bugle corps is what initially brought him and Roe together.

Warner advertised on the Internet in August 2007 seeking musicians and administrators for a startup group. Roe, a nationally recognized judge for marching music competitions, contacted him.

Warner learned that Roe’s wife and two cousins, who appeared to be perfect matches for a transplant, could not participate because of physical problems. So Warner decided to help.

Kidney failure has forced Roe onto dialysis, a half-hour procedure that he performs at home four times a day. On dialysis, artificial means are used to filter waste and remove excess fluid from the body.

Warner dropped 30 pounds and quit smoking, two steps that doctors at the Mayo Clinic said he had to take to become a donor.

Had Roe received his transplant this fall, his wait for a kidney would have been far less than what many people have to endure.

Spry said waits of four years or more are commonplace.

Spry said the transplant procedure does pose some risk for donors. He said that up to 2 percent of donors suffer complications, with 50 percent of those needing an operation.

That risk was something Warner was more than willing to take.

While previously living in California, he donated part of his liver and suffered no complications.

"I’m not kidding when I say I want to show people that it’s not that big a deal to save a life," Warner said. "I think more people would do it if they realized how good you feel."

Spry said Warner and Roe should seek another transplant center. "It’s not unusual for one transplant center to reject a donation and another approve it," Spry said.

Although Roe said he is too upset to speak much about the future right now, Warner isn’t.

"Mayo won’t give me my tests back, so I guess I’ll have to go through a lot of this again," he said. "But it’s worth it."

Contact reporter Paul Harasim at pharasim@reviewjournal.com or 702-387-2908.

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