Bringing Dialysis Closer to Home
- by Athena Ponushis
- photos by Maria Howell/Hanaside News
Melvin Moiha carries his mother from her wheelchair to the shower, from the shower to her bed. On Monday, he will dress her at 6 o’clock in the morning and drive his 74-year-old mother, Roz Moiha, from their Hana home to her dialysis treatment in Wailuku.
For the three hours and 15 minutes that her blood filters through the dialysis machine, she will sleep in a reclined chair. Melvin will sleep in his Ford van.
A nurse will walk to the parking lot and wake him. He will carry his mother home, cook her dinner and then clock-in as the nighttime dishwasher at the Hotel Hana Maui. “No can help,” Melvin Moiha says of the nights he has no time to sleep. “Only mom you got.”
Wednesday morning Melvin will wake his mother early, again. Roz Moiha will lovingly lay in her son’s arms, trying not to blame herself for her collapsed kidney. “It’s not my fault my kidney failed me,” Roz Moiha said. “What if your mom or your dad had? I wish they don’t have, but if they had, what you gonna do? What you gonna say?”
In one month, Melvin spent an estimated one thousand dollars on gas, transporting his mother to her treatments on the “otherside.”
Roz Moiha has spoken at public meetings, sharing her weariness with the Maui County Council. Traveling to dialysis three times a week for over a year, her testimony and exhaustion express the need for dialysis in Hana. Even though her blood must be filtered through dialysis, she does not want her days drained by the commute. “We not there fighting for ourselves, we fighting for everybody,” Roz Moiha said. “I not the only one gonna use that machine, one day your loved one gonna use it.”
While a life on dialysis may be difficult to picture, Rebekah Soteros has contemplated the discouraging reality. The 27-year-old woman may strive to homeopathically prevent it, but the loved one on dialysis in her future may be herself. “I was born with one functioning kidney and a little raisin,” said Soteros, who moved to Hana in October 2006.
“The little raisin never formed.”
A simple cold can burden her kidney, intensifying to the degree where Soteros must check herself into the hospital, needing dialysis.
She tends to be the youngest patient in the room, although when she hears the machines beating on their individual rhythms, she moves slow, physically tires and feels she has instantly aged.
“You see your life force being pumped out of you and put back in by a machine, this robotic thing,” Soteros said. “It’s a bizarre mind space.... “It’s like the whole thing becomes a dream and you almost forget the details that happen through the whole experience, because you have to de-sensitize.”
Soteros grows endive in her garden and seasons her diet with herbs to help detoxify her kidney. She confronts dialysis only when ill. The thought of three times a week saddens her. When she considers kupuna religiously traveling back and forth, she sees their dialysis treatment as a bit of a contradiction. “It takes some of your life away,” Soteros said. “But really, dialysis should be a gift. It should be giving time back to people, time that could have been gone.”
Equal to the drive, Soteros recognizes the culture shock. She looks out the Wailuku windows and sees the police department, not lauhala trees. She hears sirens and beeping horns, not mynah birds. Soteros sees the absence of dialysis in Hana literally taking people’s lives away from them. “I can’t imagine being born, raised and living here, where Hana’s ingrained in your body as home, then having to go to a place so industrial,” Soteros said. “Having to go there, to try and heal.”
Unable to live at home and heal, 67-year-old Francis Lono was forced to relocate. “Six months I stay away,” said Lono, affectionately known as Uncle Blue. “I miss my family, being away so long.” Lono’s grandchildren live with him. Leaving them for six months felt like a year. The Maui Economic Opportunity bus allowed Lono to return home to Hana, transporting him every Monday, Wednesday and Friday to his dialysis care. The MEO bus picks him up shortly after his 7 a.m. breakfast.
Curving within inches of the one-lane bridges, Lono keeps the driver smiling, as he prepares himself to sit connected to his dialysis machine for four hours and 35 minutes. “The doctor said, ‘You one big Hawaiian, we got to drain a lot of you,’” Lono said. “I lightheaded, they take out so much. By the time I reach home, I so dizzy, gotta just jump on the bed.”
Lono relies on his sense of humor to strengthen the days he must leave behind the coo of his great-grandson or the familiar sound of Hana Bay rain, noenoe uakea. He jokes that the nurses wake him from dialysis by shaking his foot, because he one big Hawaiian and even though his left arm might be poked, he saves his right arm for swing.
“Dialysis in Hana be better,” Lono said. “Soon as you done, you do something, have lunch, not fight the traffic.... “But need one spare generator. Hana always go off and we get hot blood.” Lono says he does not feel any discomfort during dialysis, unless he watches his machine. But when Lehua Cosma looks at him, when she looks at Roz Moiha and even when she looks at her own mother, she can see their strain.
“Dialysis is painful, I feel it,” Cosma said. “I see it in them, when I look in their eyes and in their voices, they’re in pain but they’re not gonna tell you.”
Cosma cries when it rains. She fears her father will encounter fallen trees on the dark road. And she prays her mother will not miss her dialysis treatment. Cece Park, Cosma’s mother, must leave her Hana home at two o’clock in the morning, three times a week. She has watched her husband Andrew roll big boulders out of the fog and tow trees off the highway. Landslides trigger a tense thought, “I gonna miss my appointment for dialysis.”
If Park does not walk through the opening doors of Liberty Dialysis at 4:30 a.m., she may be forced to wait until 9 p.m. for treatment. “Everybody all lined up already,” explains 65-year-old Park. “When I pau, somebody waiting for my chair. Maybe somebody no show up, I wait. ... I cannot grumble, at least they take me.”
Park has seen patients who begin to think bad. The ride’s too long, their car broke down, they never had a good car. When they want to give up, she holds their arm. When their faces look like they don’t want to be in the dialysis center, Park reminds them of their blessing. “God gave us a second chance,” Park believes. “Not many people get a second chance. Like some cancer, you might not get one other chance. We gotta make good.”
Park’s oldest son wanted to give her his kidney, but she could not risk his health running a parallel course to her own. “What if his kidney jams up?” said Park, mother of seven. “One of your kids bound to. What if I take from the one who’s gonna get in trouble?”
Park does not want to worry the patients who wait to talk story with her on their dialysis day. When it storms, they are nervous about her drive from Hana. But when they ask, “It’s raining, how’s the road?” Park somehow smiles and answers, “Not bad, small kind. Still pass.” Cosma thinks of her mother’s unpredictable drive down the Hana Highway as a matter of safety in itself. She has seen her mother rely on the volatile road for constant treatment. Pondering the four years that have passed, she starts to feel angry. Emotion drove Cosma to found Hui Laulima O Hana in April 2004, a community-driven group committed to bringing dialysis to Hana.
“Even if I not here,” Park has encouraged her daughter, “You should still fight for people. They gonna need it. Not everybody can afford to go to the otherside, spend money on gas, something for eat, for wear and tear of the car.”
Cosma confesses she has been shy since childhood, but now she passionately speaks as the voice for Hana residents on dialysis. The Maui County Council has listened, extending two grants totaling fifty five thousand dollars. Part of the funding was allocated for renovations to a government property situated in Hana, aiming to convert a home into a free-standing dialysis center. But the home currently houses the Hana Health physician and hence, has become a point of contention.
Cosma said the state of Hawaii owns the property, although the county holds direct control over the home through an executive order. The Department of Land and Natural Resources continues to clarify the conditions of the lease.
“We are unaware of the house being approved for a dialysis center,” said Cheryl Vasconcellos, executive director of Hana Health. “We would hope for an alternative for our doctor, because the entire community could become at risk if our doctor was unable to get to the clinic in a timely manner.” Vasconcellos said Hana Health has been willing to help bring dialysis to Hana, if appropriately funded and provided safely. After reviewing the volume of federal regulations for a full-blown dialysis center, she envisions home dialysis.
Roz Moiha lived the reality of home dialysis. “I swollen every time, my whole body,” said Roz Moiha, whose stomach was purple from the machine. “I hardly open my eyes, I cannot see.” Her aching outweighed the convenience of home. Now she chooses the needle. She chooses the Hana Highway and the pukas in her arm.
If Hana Health’s proposed “wellness village” continues to progress, Vasconcellos sees home dialysis as an aspect of the potential kupuna housing. Though considering legislation, ground breaking still stands three years away.
Every time Cosma passes the debated home, she wants to be inside, fixing it up. She often wants her mother’s optimism. Park will look a new patient in the eye and promise them, if they relax, the poke of the needle will not hurt. She faithfully brought tuna sandwiches and carrot bread to a man she saw fall down during dialysis. He did not fall down again.
“The same way we are greeted when we come into this world, that’s the same way I believe we should be when we leave,” Cosma said. “Surrounded by family.”
Cosma compares waiting for a dialysis clinic in Hana to a road block, one big eucalyptus in the way. When she sees Hana patients, she’s reminded, hurry up. She believes they deserve to have their artificial kidney, their dialysis, near their family. If dialysis were here in Hana, they would not feel like a burden.
“Funding is the big issue,” Vasconcellos said. “We have done studies on the numbers of patients needed to support a full-blown operation. Thank goodness, we’re not anywhere close to those numbers in Hana.”
But Soteros does not want her health issue to define her. She does not want to be labeled with kidney failure. She wants to be young and healthy, not seen as a number. “It shouldn’t be about numbers,” Soteros said.
“It should be about life and the fact that each one of us, each one of our children, each one of our parents are just one person. They’re lives should not be de-valued because of a small number.”
Hānaside News is a quarterly newspaper, printing four issues a year. We cover a variety of news and events for East Maui from Hāna, Maui. Browse through our collection of past cover stories below, and click the image to read more.