Doctors prevent grandmother from organ donation

Posted: Wednesday, December 26, 2001

ANCHORAGE (AP) -- Her neighbors were frantically buying their last Christmas presents, decorating the trees, even baking cookies, but Nancy West had other plans to make.

A week shy of Christmas Day, she was on the phone with Dr. Clinton Lillibridge's office in Anchorage. Are you ready, he asked, to fly down to Stanford University in California for some tests? And by the way, can you do it during the weekend?

Things were moving fast but the tests were crucial. West's health wasn't the problem. It's her grandson that needs help.

Just 15, Chris Phillips has a liver that's worn out. His disease is deadly, but a liver transplant could bring a complete cure, Lillibridge said.

Getting that liver isn't easy. Across the nation, 18,600 people are waiting for new livers. About 15 of them are in Alaska, according to Life Alaska, the state's organ donation center. Last year, less than a third of them got the livers they needed.

Chris had been on the liver donor list for a year, and nothing happened. So as the holiday approached, West made a decision. She would give her grandson a unique gift. He needed a liver, and she had one to share.

''He might get a wonderful Christmas present,'' Lillibridge said, making the preparations last week.

Livers are unique organs; portions of them can be removed from a living donor and implanted. West talked repeatedly with Lillibridge's office, making final arrangements for last-minute tests. The doctor's staff set up the travel plans.

So when Nancy got a call Thursday from Lillibridge's office, saying please come in at 4 p.m., she wasn't worried.

When she arrived, the bad news came. For a year now, West had lost excess weight so she'd be a healthy donor for Chris. Then, when transplant centers questioned her age, saying she was too old to donate, she helped find another center who'd consider her.

But doctors at Stanford University, where the transplant was to be done, still had reservations. They called Lillibridge, telling him they thought removing Nancy's liver would be good for Chris' body but not for West's. The surgery was too risky, and they wouldn't sacrifice West's health to help Chris.

After hearing the bad news, West's mind was whirring with other possibilities. She can't give Chris the gift, but someone must.

When Dr. Lillibridge looks at Chris, the teen-ager he sees today is not that same boy he knew 18 months ago.

Chris can't remember the last time he went to class. It was sometime last year, but he kept getting sick so he dropped out of seventh grade at Central Middle School. He'd like to snowboard or play soccer, but his dad, Vernon Savage, pulled him out of contact sports. His family had seen him slip and bump into things, causing him so much pain that he had to be seen by doctors.

Chris is smaller than most other 15-year-old boys. His liver disease prevents him from growing, Lillibridge said. It's taken away his spunk, too.

''He didn't used to be this quiet,'' Lillibridge said. ''He used to be a regular, effervescent young kid. This is not the normal Chris.''

Chris isn't nervous about needing a liver transplant. He's anticipating it, saying it's the one thing that will let him do the things he misses.

Chris' disease, primary sclerosing cholangitis with cirrhosis, is more common in adults than children. Lillibridge has been a pediatric gastroenterologist since 1966 and he's never treated another case of it.

The disease is destroying Chris' bile ducts. Bile is necessary to remove toxins from the liver and the rest of the body. In Chris' body, this isn't happening and toxins are building up in his blood. The liver failure also prevents his body from using all the nutrients it needs, so he's losing weight and becoming weaker.

Since learning Chris was sick, the family has made regular trips to see Seattle specialists. In the fall of 2000, it was obvious a liver transplant was necessary. Donated organs often come from people who have died. But doctors have learned they can take part of an adult's liver and implant it into another person.

West and Savage volunteered to be tested as possible living donors. Savage wasn't a match, but West shared something special with her grandson: They both had type O blood.

If doctors use a living donor, they must make sure the transplant surgeries will be healthy procedures for both the donor and recipient, Lillibridge said. West knew right away that she had work to do before becoming an ideal candidate.

She had high cholesterol and she carried too much weight. At 5 feet 4 inches tall, Nancy weighed 260 pounds. She'd tried dieting and exercising but couldn't take the pounds off. She finally took a more drastic action.

In June, West had gastric bypass surgery. During the procedure, surgeons block off most of the stomach to create a smaller stomach, which means the patient will eat less and likely lose weight.

When she arrived for the procedure, the physicians commented on how calm West was. Her mind was set.

''If it had just been my health problems, I don't think I could have persuaded myself to do it,'' she said. But this was for Chris.

Just shy of Christmas, West had lost 64 pounds. She felt like she was in her best health ever. She was ready to donate part of her liver to Chris.

But West ran into another problem at the nearest organ transplant center, Children's Hospital in Seattle. Doctors said they wouldn't consider a living donor over the age of 40, Lillibridge said. The day after Christmas, West turns 59.

Medicaid, the government insurance program the family was using to pay for the transplant, favors traveling to the closest treatment center. But Chris was running out of options, and Lillibridge thought West should still be considered as a donor. He pitched an idea to Medicaid: Send West and Chris to the Children's Hospital at Stanford University, a transplant center that would consider patients as old as 60.

West waited again. Medicaid finally allowed this arrangement, and Lillibridge's staff quickly tried to make it happen. Initial conversations were promising.

But then doctors found out West had lost her weight following a gastric bypass surgery. They thought West's surgery, as well as her age, made her a risky candidate.

West was frustrated. She'd had the surgery so she could be the donor, and now doctors were telling her the surgery disqualified her.

''They said it's still not good enough, that is, the bypass surgery puts a strain on the liver,'' Lillibridge said.

West and Lillibridge hope to find another solution.

''We're going to try everything we can,'' Lillibridge said. He's heard that the new year will bring a change in the donor list, bumping sick children such as Chris closer to the top.

West remembers what she told Chris almost two years ago, when he first found out how bad things were. Chris had two questions. He wanted to know if he could make his other friends sick. Grandma assured him that wasn't going to happen.

Chris asked a tougher question: Am I going to die?

No, she told him, because we're trying to get you a liver.


(Distributed by The Associated Press)

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