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‘Thrills’ that can cause depression
(by Maggie Fazeli Fard - December 12, 2007)
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STAFF PHOTOS BY MAGGIE FAZELI FARD
Kim Davis, clinical coordinator at Westwood’s
Lillian
Booth
Dialysis
Center , is pictured with patient Michael Cernigliaro of
Dumont . Cernigliaro, 65, has been on dialysis for 18 years to treat kidney disease.
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At the age of 65, Michael T. Cernigliaro is a patient man. Talkative, yes, as all the nurses at the
Lillian
Booth
Dialysis
Center in Westwood know, but patient nonetheless as he sits still four hours a day, three days a week as scenes from tawdry soap operas flash before him.
But just under the surface, Cernigliaro has “thrills.”
“Want to touch it?”
Cernigliaro gestures at his right arm, where a golf ball-sized lump sits on the inner bone of his wrist. It’s hard not to wonder what the knob-like protrusion feels like – Is it hard like bone? Doughy, perhaps like an accumulation of fat?
“Go on,” he insists, pointing again but not bringing his wrist any nearer.
The hump is firm, resisting only slightly to the prod of a fingertip. It is also vibrating.
“It ‘thrills,’” Cernigliaro says, trying to explain the slight shiver as his heart pumps blood through his body. “My wife used to say she could hear it,” he continues with a laugh. “It kept her up at night.”
The hump isn’t bone, nor is it fat. Called a “fistula,” the hump is the result of an artery and a vein that have been joined together, an access point to Cernigliaro’s blood. Despite his cheery disposition and tawny, boyish face, Cernigliaro is very sick.
Eighteen years ago, the
Dumont resident suffered from complete kidney failure, meaning his kidneys could no longer process and remove waste. No one knows why his kidneys gave up and no one knows how he’s managed to live so long.
“One day I was healthy; the next, I was in complete failure,” he says. “I can remember the doctor say it to me, and my wife was there. First of all, I was devastated. I think we both said, ‘Oh my god. How are we going to be able to afford this? We’re going to lose everything.’ It’s somewhat sad because you don’t know it’s happening to you.”
It is this element of surprise, says Dr. Mirel Abramovici, the medical director of the
Lillian
Booth
Dialysis
Center where Cernigliaro is a patient, that makes kidney failure particularly devastating.
“The problem with kidney failure is it’s silent,” says Abramovici. “By the time symptoms show up, you’re already in big trouble. With heart disease, at least you feel pain.”
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Mildred Gangeri of Norwood, a patient at the
Lillian
Booth
Dialysis
Center in Westwood.
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With kidney disease, the pain comes from elsewhere. Patients oftentimes deal with “co-morbidities,” as Abramovici calls them, including uncontrolled conditions such as diabetes and high blood pressure that led to kidney failure in the first place. Others develop conditions later; Cernigliaro, for example, has developed heart problems in old age and carpal tunnel syndrome as a result of the dialysis treatments he undergoes 12 hours weekly.
However inconvenient, explains Abramovici, dialysis is the only viable treatment option for patients.
“There is no cure,” he says. “The only cure in a way is kidney transplant. Unfortunately, it’s a long wait.”
The alternative to dialysis, says Abramovici, is unthinkable for anyone whose kidneys function properly.
“It’s either dialysis or death,” he says matter-of-factly, noting that it is not uncommon to see patients take the second option, allowing one of three things to happen: 1) Toxins could build up, and the patient would fall asleep and go into a coma. 2) Potassium could build up and cause a heart attack. 3) Fluids like urine could build up, and the patient would die of suffocation.
“There are a lot of older, debilitated patients who realize they have a poor quality of life and the way out is to just stop dialysis,” he says. “That’s actually a courageous way to die, I think… It’s a bad disease no matter which way you look at it. It really stinks.”
And so, approximately 65 mostly elderly men and women attend three four-hour sessions at Lillian Booth every week, allowing a hemodialyzer – essentially an artificial kidney – to remove waste, chemicals and fluid from the blood.
To pass the time as they sit hooked up to a machine by a spool of their own blood, many patients watch television programs on the small sets connected to their chairs. Others try to sleep. Clinical Coordinator Kim Davis is out to change all that.
“We’re giving them their lives back!” exclaims the upbeat
Davis , the only original staff member remaining since the center opened 12 years ago.
To make the time her patients spend at the center more pleasurable and productive, Davis has arranged for local medical and personal care professionals – including a podiatrist, a dentist, a manicurist and a masseuse – to visit patients and give them treatments. “It went over really big. Some patients hadn’t had a dental screening in 14 years.”
Davis has also arranged pet therapy sessions – one of the center’s pharmaceutical reps brings in her terrier, “Goldie,” to visit the center – and a patient advocacy program, in which more upbeat patients are specially selected to spread the love by talking to their fellow dializers.
Davis has involved her patients with the renovations planned for the coming year, asking for their opinions on everything from paint colors to chairs. She and her staff organize costume contests every Halloween, spanning themes from “Pirates of the Caribbean,” “
Alice in Dialysis-land,” and, most recently, “Wild Wild Westwood.” And on any given day, the sounds of a harmonica or guitar played by patients as well as community volunteers can be heard in the waiting room and center halls.
“The roots of the dialysis center are the community,”
Davis says. “We’ve carried on this vision. I think it’s really important for them [the patients] to be involved.”
This attitude,
Davis explains, permeates throughout the staff, providing a home-like environment for patients.
“We really have a closeness here,” she says. “More than 50 percent of patients on dialysis are depressed. This unit has a personal touch and gives people hope that they can be ‘normal’ again. It’s a horrible, horrible disease. We help them forget they have an illness.”
Forgetting, even for a patient as successful in fighting the disease as Cernigliaro, is difficult.
“There have been crises,” he said in a serious moment. In 1992, Cernigliaro became eligible for a kidney transplant. For a moment, there was hope of returning to a normal life, returning to work as an international banker.
“I received a diseased kidney.” It took him 14 months to recover. “Having to deal with things… that was the biggest one.”
A smaller, more day-to-day “crisis” is dealing with food.
“Over the last 18 years, I have become somewhat of an expert,” says Cernigliaro, a self-proclaimed gourmand married to a talented Italian cook. “I understand about the blood work, the correlation between what you eat and how it affects your blood.”
As a result, Cernigliaro has learned to enjoy his favorite foods in moderation, and his wife has gone as far as to cut out salt.
“Food, in my home, is a passion,” he says. “I have a wife who is a gourmet and she spoiled me!”
Despite the grief it has caused, Cernigliaro credits understanding his disease, as well as the unrelenting support of his wife and daughter, with his success.
“This becomes a picture,” he says. “You can easily become depressed and say, ‘If I have to live this kind of life, I’d rather die,’ and stop dialysis. That’s the reality of it all… But I dealt with it. It proves that yes, you can live with being on dialysis.”
To volunteer talents or services at the
Lillian
Booth
Dialysis
Center, 363 Old Hook Road, Westwood, contact Clinical Coordinator Kim Davis at 201-664-6649.
Maggie Fazeli Fard's e-mail address is fazelifard@northjersey.com
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