Health
Treatment hits the road

By Beverly Creamer
Advertiser Staff Writer

Lynette Crozier gets treatment at St. Francis Medical Center's Leeward dialysis facility, with assistance from nurse Delia Badua. Richard Ambo • The Honolulu Advertiser

"There's this sweet little lady in Las Vegas named Mabel, and she likes those red coconut balls, so I always make sure I have some of that in my bag for her," said Crozier, who is already dreaming of her next trip in September. "For the unit, I usually take a box of chocolates. They're good to us."

If not for the nationwide system of visitor dialysis programs, thousands of patients dependent on renal dialysis to purify their blood because of kidney failure would be destined to stay put.

In Hawai'i 1,800 people are on dialysis, and while the incidence of kidney failure in the state is higher than in Northern California, it's still lower than that in some areas of the country, including Texas, Arkansas, Oklahoma and Southern California, among nearby regions. Nationwide about 300,000 people require dialysis.

"There have been patients who have contacted me and been very anxious about making their first trip," said Mabel Backus, visiting patient coordinator for the four Las Vegas Davita dialysis units, which draw sometimes as many as 20 visiting Hawai'i patients a day in the summer months. "They didn't think they were ever going to be able to travel again. It's just a matter of trying to reassure them that other places also know how to dialyze."

"It was terrifying at the beginning," remembers Crozier, 59. "I thought, 'Oh God, I can't travel anymore.' And then, when I asked at St. Francis they said, 'It won't stop you. You can even take cruises. There are special ships you can go on that have dialysis machines on the boat.' "

But while most centers try to make special provisions for visitors, as does the Renal Institute of the Pacific at St. Francis Medical Center, there is often no certainty that a slot will be available. It means patients must plan their trips far in advance; make sure medical records and especially insurance information are in the hands of the dialysis unit where they're visiting; and build flexibility into their schedules.

"One of our patients (Elizabeth Ancheta) wanted to go to the graduation of her cousin in Washington state and had to fly in and out over the weekend because there was no space (in a nearby dialysis unit)," said Brent Auyong, a social worker at the St. Francis Renal Institute. "That's kind of a problem. Their units are so full they can't take visitors."

For Ancheta, that meant split-second timing. "I flew out Friday right after dialysis," said the Dole Intermediate special education teacher. "I finished dialysis, went home and changed, and then my sister picked me up and we went straight to the airport. Then I came back Monday morning on the first flight, got in, rested for a while and went back to dialysis."

But she'd do it again because of the delight her visit brought her young cousin, she admits.

Auyong has heard of patients who have had to cancel trip plans or call from the airport and keep their fingers crossed about rescheduling when a plane's been late or delayed. "Patients have to be very flexible with their schedules. They need to be willing to accept whatever time slot the unit has open," he said.

For retired mason Roy Tateyama, 60, of Honolulu, who enjoys sporadic trips to Las Vegas despite being restricted to a wheelchair and needing dialysis, the four-hour blood-cleansing treatment has become more of a visit with familiar friends than an onerous medical ordeal. He favors the West Charleston Street unit, where Dawn Nihipali is office manager.

With its location just a few miles from the Vegas strip and close to the California, Fremont and Main Street hotels Hawai'i people favor, it draws the bulk of Hawai'i travelers needing dialysis. It may not be the newest and nicest unit, but it has half a dozen staff from the Islands and a friendly, open attitude.

"Whenever we want to go, we just call in," said Tateyama by phone from Las Vegas as he finished up a dialysis treatment a couple of weeks ago. "I've been over here a couple of times, so we have a connection," said Tateyama, who prefers the earliest possible appointment so there's no waiting and he can get out to the casinos.

For Nihipali, who's been known to shed tears when Hawai'i people came in for dialysis because seeing them makes her feel so homesick, Island patients bring the feel of home. "When they see people they can associate with," she said, "the pidgin comes out and they feel a little more comfortable. The minute they call, you know they're from Hawai'i. They say, "I like know what time my dialysis is.' That's when my pidgin comes right out."

But there is a second comfort level needed as well: Patients often need reassurance about the kind of care they'll be getting. "They have questions like 'What's it like? Am I going to be on dialysis for the same length of time as in Hawai'i?'" said Nihipali. "We assure them they will ... They get pretty scared because it's not home, and they don't know the people. Their biggest concern is to make sure they get the medical care they get at home."

When the phone rings in her Vegas office and she hears a voice on the other end with that unique Island accent, Backus says she knows that this is a patient who will arrive with a cheery attitude, and goodies for the staff to boot.

"They're nice people to deal with," she said. "Sometimes I feel like if I came to Hawai'i and stepped off the plane and said 'I'm Mabel from Las Vegas,' everyone would know who I was."

"They love us," agrees Crozier. But she still takes no chances when she travels. The day before her dialysis is scheduled, she scouts out the route to the unit. One time it took her an hour and a half, though she was told the place was just 15 minutes away. "I took the long way," she admits.

Crozier encourages others to travel without fear: "At first, you're kind of scared because you're not used to someone else poking you. But I've gone all over. I tell people 'Don't let it stop you.' That's what I was afraid of, never traveling anymore. But you look at the list, every state has dialysis units."

Crozier warns that traveling out of the country may be more complex. "You have to check with Medicare (which covers about 80 percent of the costs of dialysis). Sometimes they don't cover going out of the country. If it doesn't cover, you have to pay up front and then they'll reimburse you when you bring the bills back."

A dialysis treatment costs around $350, including the physician's fee, and payment has to be worked out far in advance of the travel.

At the Renal Institute at St. Francis, patients come from as far away as Argentina and Japan. "We have a transient dialysis packet that we fax or mail to the patient or the unit," said Josie Rivera, transient coordinator for the Visitor Dialysis Program at the St. Francis Renal Institute. Visitors must fill out the form and return it 30 days in advance with proof of insurance. Foreign visitors often put the cost on their credit cards, said Rivera, and worry about reimbursement later.

But the paperwork can be daunting, even for U.S. visitors, admits Roberta Lovely, who heads the Visitor Dialysis Program at St. Francis, which serves about 500 visiting patients every year. "We need to know about the patient's treatment history," said Lovely. "We encourage our patients to do it as much in advance as possible, and to always re-verify the arrangements."

While the 11 Hawai'i units on five islands try to accommodate visitors, it's been harder to do so this year, said Lovely. "We've had to limit some of our visitors this year because we've had more (local) patients who have started dialysis. Our residents are our primary concern."

While the social workers like Auyong have been handling many of the details of transferring records to units where patients travel, they also encourage patients to begin making their own contacts. It's part of helping individuals gain a sense of control over their lives.

"The dialysis unit social worker helps them a lot," said Backus. "But they're leaning toward encouraging the patients to make their own initial contact, partly to help the patient be more independent. But it's still the social worker who sees we get all the medical information."

Backus admits that for some patients, there's no concern at all. "Some of the people have been back every six to eight weeks. And some have moved up here. And they just continue coming. I used to see them as visitors, and all of a sudden I'll see them in the same chair, every other day."