Thursday, January 18, 2001
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Posted on: Thursday, January 18, 2001

The transplant waiting game shows progress in the Islands

By Beverly Creamer
Advertiser Staff Writer

Although these are all legal documents, said Chris Carroll, clinical director of the Organ Donor Center, it’s also important for individuals to tell their families they wish to become organ donors. If a family member objects, said Carroll, the center respects that objection and will not take the organs for donation. But he said he has yet to see that occur in Hawaii if an individual has clearly indicated their wishes.

Choosing to be an organ donor

To express wishes to become an organ donor, individuals may:

Indicate so on their driver’s license, on the renewal form.

Sign a donor card and a family information card issued by the Organ Donor Center of Hawaii. (Call 599-7630.)

Indicate so in a living will.

After his bath each night and just before his mom reads him a bedtime story, David Wilhelm knows what’s coming, and sometimes he cries.

"I just have him think of other things," says his mother, Puanani Wilhelm, as she snuggles him dry in a towel, and then swabs a spot on his thigh for his daily shot of Human Growth Hormone. The medication keeps his small body growing normally as he fights the last stages of kidney failure.

David Wilhelm, 3, is the youngest of five children and one of 240 Hawaii patients waiting for a kidney transplant. By June, his own congenitally defective organs will have stopped working.

But the boy is one of the luckier people on the transplant list. Her kidneys are a good match to his, and she has begun the long series of tests to make sure she’s healthy enough to give him one of her organs.

"It’s something you do for your child’s welfare, but it’s not something you think about without fear," said Puanani Wilhelm, a single mother.

Children are high priority for kidney transplants because dialysis, the process by which blood is cleansed mechanically when the kidneys are unable to do the job, is difficult for young people, said Cathy Bailey, evaluation coordinator for kidney transplants at the St. Francis Transplant Center. "There are social issues, like the plastic tube that goes in the neck. You have to drain the tube four to five times a day. It’s very, very difficult for the child and caregiver."

While children are often the first to receive organs — and often from family members — not everyone has a donor waiting.

The rarer the blood type, the longer the average wait: two years for A, three to seven for O, seven for B, said Bailey.

That’s one of the reasons the news this week from the Organ Donor Center of Hawaii is so welcome. In the past year, 70 Isle patients received life-saving transplants, a record year for a state where there’s been concern about low levels of organ donation in the past.

While there was an overall 12 percent increase in the number of donors, in the Filipino community, a significant portion of the Hawaii population and the one with highest need for organ transplants, donations rose from 3 percent of the total eight years ago to 25 percent last year.

The turnaround came partly because of an education program spearheaded by Tony Sagayadoro, Hawaii coordinator of the Minority Organ Tissue Transplant Education Program (MOTTEP).

But Sagayadoro said it wouldn’t have changed without appeals from Filipino business, religious, social and civic leaders, who refuted a widespread belief in the Filipino culture that the body must be whole in order to enter the afterlife.

There’s more to accomplish, though. With kidney failure 30 percent above the national average, and the state’s diabetes rate almost a full percentage point above the national level, there’s a growing pool of people who will need dialysis and transplants.

There are now 1,568 patients on kidney dialysis in Hawaii, including 553 whose kidneys failed last year.

Diabetes a culprit

Kidney failure is especially high among Native Hawaiian, Japanese and Filipino ethnic groups, said Julie Schweitzer, associate executive director of the National Kidney Foundation of Hawaii.

"And it all ties into diabetes," said Schweitzer. "Sixty-six percent of the Hawaiians on dialysis are there as a result of diabetes. Among the Japanese Americans on dialysis, 54 percent are there because of diabetes. And for the Filipino population it’s 40 percent."

The Kidney Foundation reports 40,000 diagnosed cases of diabetes in Hawaii; but probably another 40,000 who have it and don’t know they do.

To pinpoint more exactly why there is such a high rate of kidney failure in the Islands, the foundation is expanding the Kidney Early Evaluation Program (KEEP), a study tracking people who have at least one risk factor for kidney failure. Risk factors include diabetes, hypertension, protein in the urine. Once in the study, which now includes 300, patients are tested and evaluated, with researchers looking at factors such as diet, lifestyle and heredity.

"We want to find out how long can we stave off kidney failure if you’re tagged at-risk," said Schweitzer.

For little David Wilhelm, the answer is not important, however. Doctors knew when he was born that his kidneys weren’t working properly. His mother has been grateful for every single day with a little boy who has an almost photographic memory and a friendly nature.

"Everything I read said most of these children die in infancy because the kidneys don’t retain protein," said Puanani Wilhelm, state specialist for the Hawaiian Language Immersion Program in the Department of Education.

Since the day he came home from the hospital David has been on a handful of medications — eight a day at first. Puanani Wilhelm is grateful to her mother, retired nurse Hisako Wilhelm, who has been one of the child’s primary caregivers, able to handle her grandson’s tricky medication schedule.

Monthly he gets a blood test for cytotoxins, foreign antibodies that can affect an organ match. He’s stoic about the pain, but fascinated by the doctors.

"He’ll watch and say, How come you’re doing that?’" said his mother. "He knows a stethoscope from a blood pressure cuff. Playing doctor is his favorite thing to do."

Not long ago the two made a visit to the Transplant Center to begin the tests for organ donation. Puanani Wilhelm explains everything to her son.

"I said, Today we’re going to talk about your kidneys. They don’t really work right and we’re going to get you another one.’

"OK," piped David.

"Do you know what your kidneys do?" asked his mom. "Yes," said the boy. "They make shishi."

"Whoa," said his mom.

Donors screened

Donors are tested even more rigorously than recipients, and can be rejected at any point. The screening includes tests for serious disease and also a psychological evaluation.

"That’s to make sure she’s fine with giving a kidney," said Joyce Nekoba, another transplant coordinator with the Transplant Center. "To make sure they don’t hold a grudge or expect anything in return. It’s a gift."

In one case where a donor from the Philippines was giving a kidney to her sister, there hadn’t been sufficient screening. Just before the surgery, the donor backed out. "She was just afraid," said Bailey. "She just finally blurted it out and said Look, I can’t.’

"These things happen. There are a lot of psychological issues."

The operation itself will leave David’s own kidneys intact and tuck the new one into a pocket of space by the right hip bone, connecting the ureter into the back of the bladder.

"As long as there’s some function and it’s not infectious we don’t remove the others," said Bailey, of the Transplant Center.

For the rest of his life, David Wilhelm will be on medications to keep his body from rejecting the new organ. Though the average lifespan for a transplanted kidney is 10 years, with luck his will last at least 27 — the record set by another Hawaii patient.

It seems a small price to pay so a mother can watch her child grow up.

"We’re very close," says Puanani Wilhelm. "I’m his best playmate."

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