Business

Hundreds in Idaho wait for organs

Donovan Sayler takes his blood pressure in his bedroom before starting his nightly in-home dialysis treatment for a kidney disorder.
Donovan Sayler takes his blood pressure in his bedroom before starting his nightly in-home dialysis treatment for a kidney disorder. kgreen@idahostatesman.com

The story of Boise State University football player Jeremy Ioane's need for a kidney transplant made headlines Thanksgiving Day, prompting a fundraising campaign to help Ioane's family pay future medical bills.

Ioane's role as a Bronco living with kidney failure is unique. But his struggle is shared by hundreds of Idahoans.

The wait time for a kidney in Idaho is two to five years.

Donovan Sayler is 30 and lives in Nampa. He works part time as a service technician for A-1 Heating and Air Conditioning. He used to work full time, but disease attacked the tiny filters in his kidneys until they didn't work anymore.

Sayler learned July 9 that he has IgA nephropathy, sometimes called Berger's disease. It's probably been eating away at his kidneys for years. Sayler still makes time to go bowling with friends and family on the weekend, though he tires easily and can't stay out as long as he wishes he could.

Until he can find a kidney donor, Sayler will go to sleep every night hooked up to a dialysis machine.

Michael Butler turns 60 soon. He lives in Orofino and spent much of his life working for the state, in the welfare division.

Eight years ago, he started to get sick. He would end up in the emergency room twice a year with a high fever and chills. Doctors ran expensive tests but couldn't figure out what was wrong - until he went to a specialist in Seattle who told Butler he has a bile-duct disease that is slowly destroying his liver.

The only cure for the disease - primary sclerosing cholangitis - is a liver transplant.

IT FELT LIKE THE FLU

Sayler started getting headaches, feeling dizzy and throwing up his dinner. He went into a Primary Health Medical Group urgent care clinic in early July.

The next day, the clinic "blew my phone up (with calls) until I would answer, and told me I needed to go to the ER," Sayler said. He wrapped up his service call and headed for Saint Alphonsus Medical Center in Nampa.

"I thought I was just going to be in and out of there," he said. But doctors and nurses started hooking him up to IVs. They put a catheter into his jugular and started dialysis the next day. He spent six days in the hospital and couldn't work for four months.

Only now does he realize that trace amounts of blood in his urine years ago were warning signs.

He now uses a kind of dialysis that pumps liquid into his abdomen at night and filters it for 8.5 hours.

"It makes you feel like a four-month pregnant man," he said. "I feel for the ladies now."

TRIPS FOR TREATMENT

Butler spent four years wondering why he'd suddenly feel miserable.

By 2010, when he visited the specialist in Seattle, the whole right side of his liver was shut down and the left side was inflamed, he said. It took doctors six hours to break up stones that were blocking a bile duct.

The diagnosis solved the mystery - but it didn't solve the problem.

Infections still dog his liver. Emergency airlift services - both paid and the volunteer-run Angel Flight - take him to and from Seattle on a regular basis.

THE WAITING GAME

It's unclear how many Idahoans need a liver or kidney transplant. Agencies track the numbers by region, not state.

But sources said "hundreds" is a conservative estimate.

For some Idahoans, a transplant is too expensive, or they don't qualify because they have another severe medical condition or fall short of other requirements for transplant eligibility, said Peggy Doyle, a social worker at Liberty Dialysis in Meridian.

Eleven of the 245 patients at Liberty Dialysis' local clinics received kidney transplants this year, she said.

THE COST

Butler and Sayler both have learned they're on transplant waiting lists. Sayler hopes to find out soon whether he can use a family member's kidney.

A kidney transplant costs upward of $200,000, with ongoing costs around $35,000 a year after the transplant, said Doug Ostler, pre-kidney transplant coordinator at the University of Utah's transplant center.

That price goes up significantly for other organs, he said.

Idaho has no organ transplant centers, which means Idahoans travel to Utah, Washington or Oregon for the procedure and often must stay there for weeks to months while they're recovering.

Anyone with end-stage kidney failure who relies on dialysis can qualify for Medicare, regardless of age. Many people with other organ failures can qualify for Medicare when the organ failure becomes a disability, Ostler said.

But in states such as Idaho that do not offer Medicaid to many low- or no-income adults, the patients end up bearing the rest of the cost, unless they have private health insurance on top of Medicare, Ostler said.

Sayler is on Medicare. He also has private health insurance through work that requires a $5,000 deductible before it covers what Medicare won't.

He expects to pay that deductible this year and next, at least.

"I'm worth over $1 million in medical bills right now, I can guarantee that," he said with a chuckle.

Butler said Medicare will cover his transplant, but his out-of-pocket bills are mounting. After the transplant, he'll take drugs for the rest of his life to keep his body from rejecting the transplanted liver. Those medications cost $3,000 to $5,000 a month, he said.

He is furious with Idaho lawmakers for balking at a Medicaid expansion, which would have made Butler and others like him eligible for the state-run public insurance plan.

Butler owes $25,000 in medical bills, he said. That's just his share, not counting what Medicare has paid, he said.

"When you're lying there, and all of a sudden you have a 105-degree fever and you're shaking all over the place, you don't say, 'Oops, I better not go, I don't have the money,' " Butler said.

Family members, church friends, acquaintances and even a distant former classmate have chipped in, he said.

"We had a community group that came in yesterday and built us a ramp up to the front door," he said. "We do, in a lot of ways, feel truly blessed."

Audrey Dutton: 377-6448, Twitter: @IDS_Audrey

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