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More Utahns dying while waiting for an organ transplant

Published March 26, 2013 1:01 am

Medicine • Low donations, growing demand as population ages and new technology add to transplant shortage.
This is an archived article that was published on sltrib.com in 2013, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

Not once during the two years her father spent waiting for a liver did Ahren Exeter lose hope.

Not even after he was twice paged and prepped for surgery, only to be told the donor liver chilling in an icebox was a bad match.

"It wasn't even a question for us," said Exeter. "We knew he would get a transplant because of his positive energy and because of how many people he helped, how many lives he saved."

But no amount of positive thinking or good deeds could slow time. In August 2007, Robert Castledine, a career nurse and advocate for organ donation, died of liver failure. He was 53.

Stories like Castledine's rarely grace headlines. But they're increasingly common.

Last year in Utah there were 271 organ transplants and 524 people who needed new organs, 43 of whom died waiting for one.

That's a 10 percent increase from 2011 and nearly three times the mortality rate of a decade ago — a disturbing trend with no easy remedy, say transplant advocates.

"Up until a few years ago we were saying the annual waiting list was about 350 people. Then it jumped to 600 at some point. Now it's at 732," said Alex McDonald, director of public education for Intermountain Donor Services, which does organ recoveries.

High donations, higher need • As kids, Exeter and her sister, Erica Castledine, loved visiting their dad at work. He was the head intensive-care nurse at a small-town hospital in Texas.

Castledine remembers walking the halls and marveling at the "fancy" machines. Years later, watching the heart-rate monitor above her dad's bedside, she wished she could turn back time.

Doctors think Castledine was exposed to hepatitis C at work. The virus leads to swelling and scarring of the liver, eventually squeezing out the healthy cells.

"Their best guess is he had it for 20 years and didn't notice because he was so healthy," said Exeter, who inherited her father's love for skiing and the outdoors, which is what drew the family to Utah.

Utah is insulated from the worst of nationwide organ shortages because it's less densely populated than other transplant centers. Nationally, 18 people die each day waiting for a transplant, according to the U.S. Department of Health and Human Services.

Utah has also consistently been in the top five states for organ donation, with 90 percent of families consenting at the time of death, said McDonald.

But that means even achieving a 100 percent consent rate would yield only about 10 more donors a year, he said. "That's huge for the 10 people who could be saved. But it's just 10 more livers and hearts. It's not the complete answer."

Meanwhile, demand for transplants is growing as the population ages and medical advances broaden the pool of people eligible for surgery.

Further heightening demand in Utah is its role as a transplant hub that draws patients from Idaho, Wyoming and Montana, which have no transplant centers, and Nevada, where hospitals only do kidney transplants.

Challenges - and solutions • Utah could benefit from efforts in other states to boost donation rates, which have remained flat for a decade, in part because fewer people are dying from injuries.

"Cars are safer, more drivers are wearing seat belts and more bikers are wearing helmets. That's a good thing. But it cuts down possibilities for organ donation," McDonald said. "Not everyone can be a donor. In order to keep the oxygen flowing to the organs, you have to die in the hospital while on a ventilator, generally from an injury."

And organs can't travel far. "With kidneys you have more time. It's a tough little organ. But with hearts and lungs you have only have 4 to 6 hours from recovery to implant," said McDonald. "With livers you have 10 hours."

Utahns can list themselves in another state where demand is less acute, but must have the resources to get to the out-of-state hospital within hours.

New technologies, however, promise to expand the donor pool, including a machine now being tested for Food and Drug Administration approval that keeps lungs warm and breathing before transplant.

The device could one day allow lungs to safely travel longer distances, or provide doctors enough time to repair those that, due to pneumonia, are currently of no use, said Abbas Ardehali, a professor of cardiothoracic surgery participating in the trial, and director of the heart and lung transplantation program at University of California, Los Angeles.

'Every donor is so precious' • Kidney patients comprise the lion's share of those waiting for organs. For those waiting for livers and hearts, the waits are longer and fraught with peril.

By the time Castledine was diagnosed with hepatitis C in 2005, jaundiced and weak, he was sick enough to be placed at the top of the wait list.

A year later, he had declined further and Exeter moved in to help her father's second wife care for him.

While hospitalized for renal failure in 2007, he slipped into a coma.

"At least we were all able to say goodbye," Exeter said. "Every single one of his siblings were there to watch him take his last breath."

Exeter believes the stigma surrounding transplant patients prevents some people from becoming donors.

"It's assumed they are alcoholic or diabetics who haven't taken care of themselves," she said. "But that doesn't come close to describing my dad. He would have used the heck out of that liver."

McDonald said there may never come a time when everyone who needs a transplant gets one.

"But we sure want to try," he said. "It's so rare that someone can become a donor, but when they do, one donor can save up to nine lives. That's why every donor is so precious."

Twitter: @kirstendstewart —

Waiting for a transplant

Demand is growing for organ transplants in Utah as the population ages and donations remain flat. As of last week, 732 men, women and children were waiting for organs, most of them in need of kidneys.

475 need a kidney

179 need a liver

3 need a pancreas

20 need a kidney and pancreas

51 need a heart

4 need a lung

Source: The United Network for Organ Sharing