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Change in kidney allocation rules should help patients

| Sunday, April 20, 2014, 10:30 p.m.
Stephanie Strasburg | Tribune-Review
“Dialysis is like torture. I’m so exhausted. It takes so much out of you. I just want to get on with my life,” says Ursula Bode, 64, in the living room of her two-room apartment at St. Therese Plaza in Munhall on Thursday, February 20, 2014. Doctors at UPMC put on her on a kidney transplant wait list in July but told her she might wait at least 27 months for a kidney.
Stephanie Strasburg | Tribune-Review
“Dialysis is like torture. I’m so exhausted. It takes so much out of you. I just want to get on with my life,” Ursula Bode, 64, said in the living room of her two-room apartment in St. Therese Plaza in Munhall. Bode is undergoing dialysis treatments and needs a kidney transplant. Doctors at UPMC put on her on a kidney transplant waitlist in July but told her she might have to wait at least 27 months for a kidney.

This story is the second in a two-part series.

At the end of nearly every dialysis treatment, Ursula Bode panics.

Her body shakes, her eyes tear up, her blood pressure shoots up. She desperately wants out of the recliner where, for three hours, she's hooked to a machine that cleans waste from her blood.

“Get me out! Get me out!” she yelled at one recent visit.

Three times a week, dialysis is Bode's agony. It has been this way for nearly two years, and Bode, 64, fears the treatments will never end. Doctors at UPMC put on her on a kidney transplant wait list in July but told her she might wait for at least 27 months for a kidney.

“Dialysis is like torture. I'm so exhausted. It takes so much out of you. I just want to get on with my life,” she said in the living room of her two-room apartment at St. Therese Plaza in Munhall.

A change in the federal kidney allocation rules, expected to take effect in December, would help alleviate Bode's predicament. The United Network for Organ Sharing, a nonprofit organization that oversees organ allocation for the government, will alter the way transplant candidates move to the top of the list.

The new system will benefit patients who were on dialysis before being listed for a transplant. They will get credit for time spent on dialysis, something not considered before.

“A lot of patients didn't get referred for transplants, didn't know about transplants, and got exposed to sometimes years of dialysis before ever getting on the list,” said Dr. John Friedewald, a transplant nephrologist at Northwestern Memorial Hospital in Chicago and former chair of the UNOS kidney committee.

A 2009 investigation by the Tribune-Review found that thousands of patients start dialysis without hearing about transplant options that could extend their long-term survival.

The new allocation system will attempt to curb the large number of donated kidneys that surgeons wind up discarding because they don't think they're suitable for transplantation.

The Trib reported on Sunday that transplant centers across the United States discarded one of every five donated kidneys in 2012. The federal Medicare program still paid at least $406 million to 51 of the nation's 58 organ procurement organizations that recovered the kidneys. Records were not available for seven procurers because they are part of hospitals.

“Those organs that are discarded more frequently ... are going to be shared immediately over a larger geographic area,” Dr. Richard Formica, director of transplantmedicine at Yale School of Medicine, said of the new rules.

Profiling donors

UNOS leaders said the allocation system made no effort to match the longevity of the kidney with the longevity of the recipient. An older patient could receive a kidney from a younger donor that could far outlive the recipient. Because that organ likely would function longer in a younger recipient, the new allocation will reflect that priority in distribution.

“A lot of young people far outlive their transplant, so giving them a transplant that'll last them a very long time makes sense for them and helps everybody else because they don't have to come back to the list,” Friedewald said.

The amount of time a person in need waits on the kidney donor list will remain a major factor in determining priority, but how that time is calculated will change.

The system will implement a Kidney Donor Profile Index, which will rate how long a donor kidney is expected to last based on a scale of zero to 100. Those at the top end of the number scale will be the highest-risk kidneys.

Transplant candidates will be rated on an estimated post-transplant survival score, or EPTS, based on four factors:

• Age;

• Whether they have diabetes;

• How long they've been on dialysis;

• If they've had a prior transplant.

Those in the top 20 percent will be matched with kidneys expected to last the longest. The rest of the kidneys will be allocated as they are now, based mostly on the time candidates have spent waiting.

Dr. Ngoc Thai, chief of transplant surgery at Allegheny Health Network, said the new rules are flawed because the sickest patients no longer will get the best organ.

Thai said the post-transplant survival score fails to consider the recipient's cardiovascular health, which is important because many people with kidney disease die of cardiovascular problems.

“We've decided who's deserving of the best 20 percent of the grafts with an imperfect formula,” Thai said. “I'm not sure this is the right approach.”

Bode said she was unaware of the new rules, but hopes her transplant will occur sooner. She believes getting a transplant will help her regain strength and perhaps find a job. She often wakes up in the middle of the night, worried about the future.

“I can't live like this anymore,” she said.

Luis Fábregas and Andrew Conte are Trib Total Media staff writers. Reach Fábregas at 412-320-7998 or lfabregas@tribweb.com and Conte at 412-320-7835 or andrewconte@tribweb.com.

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