Still waiting for a transplant

SELAH -- A small chalkboard just inside Janet and Gary Huntley's front door relays a simple request: "All we want for Christmas is a liver."

They mean it.

Gary Huntley, 62, has been waiting for a new liver for about 18 months.

It's felt like an eternity for this close-knit family that has endured nonstop medical drama since the day four years ago when Huntley uncharacteristically fell asleep at work, the first vague sign something was amiss.

The Huntleys' journey has put faith and family up against a transplant system that's designed to ration livers as fairly as possible.

Even so, they've found that the system is no protection against the bottomless disappointment that strikes families when a loved one suffers a health setback, knocking them from the list.

It's happened to Huntley three times, the last because he had four cancerous tumors on his liver instead of three. It's a seemingly arbitrary cutoff, but Huntley's doctors at the University of Washington Medical Center can explain it.

The Huntleys accept it.

"The U goes right by the book," Huntley said. "When they say you can't have four lesions, you can't have four."

Huntley understands because he's a medical professional -- a physician assistant and registered nurse -- and knows that science, not personal opinion or favoritism, must guide the process.

"I think Mickey Mantle changed all that," he says, referring to the famous slugger who appeared to move to the head of the list when he needed a liver.

Mantle had cirrhosis of the liver from alcoholism. Huntley has autoimmune hepatitis, a disease that causes his own body to attack his liver.

Called the Model for End State Liver Disease, or MELD, the system assigns scores from 6 to 40, with the higher numbers reflecting a more critically ill patient in need of a transplant. MELD scores, which are based on lab results showing how well or poorly a liver is functioning, was developed by transplant experts overseen by the U.S. Department of Health and Human Services.

Huntley's score is now 30, which is considered high. It can change with each regular blood test.

Despite his high score, he's not on "active" status on the transplant list. The cancer is only the latest setback to restoring Huntley to active status.

This past summer, he had an allergic reaction to an antibiotic used to treat a colon infection. First the infection removed him from the active list, then the allergic reaction. A liver became available while he was being treated, but it had to go to someone else.

Next, a hematologist found blood clots in his arm and leg, requiring blood thinners.

That raised the stakes immediately, explained Dr. Renuka Bhattacharya, a gastroenterologist with the UW transplant team.

During a 15-hour liver transplant, doctors must tie off four major blood vessels and hundreds of smaller ones. A clot would enormously complicate the surgery and risk Huntley's life.

The setbacks weakened him overall, creating more hurdles to getting back on active status.

"They said he had to walk before they would consider him again because he has to be healthy and strong," Janet, his wife, said. "So we walked."

Next they said he to eat and gain weight because he had lost 69 pounds.

Then came the cancer, which turned up in a routine scan.

"Mr. Huntley has had a lot of bumps in the road," Bhattacharya said.

Huntley's wait for a liver has been longer than most, but that doesn't count for or against him in the scoring system. Overall at the University of Washington Medical Center, 43 percent of patients on the waiting list had received a liver transplant by six months, according to the United Network for Organ Sharing, a Richmond, Va.-based organization that maintains the national patient waiting list.

The Huntleys are telling their story to highlight the chronic shortage of donated organs. Organ procurement experts have been trying to boost donor numbers, but it's a tough sell.

"Every day, 18 people die waiting (for organs) and we continue to have low consent rates across the nation," said Meg Erwin, executive director of the Living Legacy Foundation, the fundraising affiliate of LifeCenter Northwest, which runs the donor program in Washington, Alaska, Montana and northern Idaho.

Mostly, Erwin said, people don't make their plans known ahead of time, leaving grieving families to deny requests from procurement professionals.

LifeCenter Northwest is trying to reach potential donors in new ways.

This month, for example, Washington drivers getting their license renewal notices will also get a pamphlet urging them to donate money to an educational campaign to increase the supply of organs. Drivers already have the option of becoming donors on their licenses.

Huntley understands that donation is difficult for some people, and that family members may resist when approached after a loved one has died before making explicit plans to donate.

But a body without life is a hollow shell.

"That's all you are. I've seen enough death to know," Huntley said.

Huntley came to the medical field later in life. He owned a restaurant in Wenatchee when, at age 46, he felt the emptiness of a calling unfulfilled.

He thought of a favorite aunt who had been a Ph.D nurse, and confided in her. Huntley had majored in biology and always loved science. He had not yet been diagnosed with Crohn's disease, chronic inflammation of the digestive system thought to be a type of immune disorder.

The aunt didn't hesitate.

"She said nursing," he recalls.

After receiving his degree, Huntley moved the family to Medford, Ore., where he worked at area clinics and hospitals. For a time, he was a traveling nurse, a job that took him all over Oregon and parts of California.

Meanwhile, the Huntleys' three children had grown up and started their own families, bringing six grandkids. The Huntleys moved to Yakima to be closer to them, and Gary worked at both local hospitals, all the while living with Crohn's disease.

About four years ago, Huntley found what he considered his dream job. Then in his mid-50s, he had just finished training to be a physician assistant and was hired on to the heart-lung transplant team at Sacred Heart Hospital in Spokane.

While the Crohn's seemed under control, Huntley didn't realize his liver had been under serious attack for a long time. One day he overslept and missed a transplant meeting at the hospital. His family was still in Yakima while Huntley was looking for a house.

When he got to work, he fell asleep at his desk and was awakened by a co-worker who reminded him he had two patients waiting for physicals.

"I had to do a full work-up on them. I don't know how I got through it," he recalls.

Hospital personnel noticed something was wrong -- they suspected drugs or a stroke. When his wife and daughter came to get him, he didn't recognize them: "I thought my daughter was the president."

Eventually, results of blood tests revealed that he had encephalopathy, a neuropsychiatric disorder caused by a build-up of ammonia in the brain. Turns out Huntley's liver wasn't getting rid of the ammonia.

Never a smoker or drinker, Huntley nevertheless had chronic liver disease.

The Huntleys look at all the ups and downs as training for a transplant.

"With everything he's had to go through, the liver, to me, is going to be a piece of cake," said his wife, Janet.

But first they have to get rid of at least one of those tumors. After another round of chemotherapy, the Huntleys should know more.

So why can he have three tumors but not four?

Bhattacharya, with the UW transplant team, explained that the more tumors a patient has, the more aggressive the cancer and the more likely it has spread beyond the liver.

If that's the case, then medical science has shown the cancer is even more lethal after a transplant when the patient is taking drugs to suppress the immune system. The immune system has to be suppressed so the new liver won't be rejected, but that leaves the patient without a way to fight the cancer.

"You've done the patient no favors if the cancer returns with a vengeance," she said.

Gary Huntley learned Friday that the chemotherapy is containing the cancer. It's a positive development, but the cancer must remain at bay -- and hopefully go away -- for six months before he has a chance to get back on active status.

"It's good news, but I have to wait until May to know," he said.

Meanwhile, he won't tolerate any pity, especially from himself.

"We're all going to get something," he says matter-of-factly. "This is mine."

* Leah Beth Ward can be reached at 577-7626 or lward@yakimaherald.com.

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