Life On Dialysis - It Changes Everything They DoBy JOE SEELIG
Highlands Today
Published: July 13, 2008
SEBRING - The average person is born with two functioning kidneys. Even when one goes, the other can take over the load and work for a lifetime.
But when both kidneys fail, dialysis becomes the only resort until a transplant is available.
Hard Times For Charlie Guay
Life for Sebring resident Charlie Guay, 80, was a lot different before he found himself in need of dialysis. He faced a dilemma: paying for expensive medications his doctor said he needs or to buy food, gas, pay bills and keep his home.
He napped quietly Thursday morning in a recliner chair at Bio-Medical Applications (BMA) of Avon Park, located on Sun 'n Lake Boulevard, where he receives dialysis treatment every other day, three times a week.
A blue sweater covered his arms. It gets cold in here, he said after he awakened.
Guay tries not to think too much about what goes on. Sometimes it's noisy. He often works on crossword puzzles to keep his mind sharp, he said.
"I think about what I have to do during the day," he said earlier during his Tuesday treatment. "I was thinking, I have to see the doctor when I leave here. I don't think too much. You go crazy."
There are three rows of similar chairs at the center, 14 chairs in all; nearly all were filled with blanketed people Tuesday and Thursday morning. Each patient had a small television to ease the boredom. Some read; others wore headphones.
The machines were pumping through clear tubes turned red and filled with patients' blood. For anyone squeamish, it might be shocking to see for the first time.
"All (the blood) that is out of the body at one time is approximately a cup to a cup and a half," said Tina Hill, a registered nurse at the center, trying to minimize the bloody image.
The BMA center is one of three dialysis units operating in Highlands County that, combined, treat about 155 patients a week on an outpatient basis. They have the capacity to handle more - and do - when the winter visitors arrive.
Two, BMA and Renal Care of Sebring, belong to a German company Fresenius Medical Care, and the third is American Renal Associates doing business as Highlands Dialysis Center.
Jennifer Budary, a charge nurse at Highlands Dialysis, said Thursday it has 11 stations (chairs) with about 55 patients.
"We have the capacity for 66 patients," she said. "Then we are full. I'm sure when our snow birds return this fall we will be full. I told them all to call early to make their arrangements."
For unselfish reasons, Guay said he hasn't signed up on any kidney donor list.
"Most of those people are waiting for transplants - for me - everybody over there is younger than me," he said. "It affects my life, but at least I've had my 80 years."
His Is An Odd Case
Nearly 60 percent of dialysis cases are the result of uncontrolled diabetes, according to Dr. Fabio Oliveros, the center's medical director. Some are the result of high blood pressure and heart disease and others are the result of primary kidney disease.
But Guay's case is different.
"My right kidney was damaged during a major operation in June of 1985," Guay said Wednesday. "Apparently they nicked it. Nine years later they had to remove it when it became like a water tumor. I didn't even know it was damaged. All those years I was running around like I had two kidneys."
A kidney specialist in Orlando determined the kidney was dead and it needed to be removed, he said. That was 1994.
For a time he said he thought his life was over.
"But I learned later on you can live a whole life with one kidney," Guay said.
His wife Elena developed diabetes and later began to show early signs of dementia. Eventually over 10 years it got progressively worse. Ignoring his own medical needs, including the need for surgery on an aneurysm, he stayed at her side until her death in 2007.
"The bottom line is for the last two years I didn't see any doctors," he said. "I didn't eat right, I didn't drink (enough fluids) right."
When he got very sick a few months later and was admitted to an area hospital, it was discovered his "good" kidney was badly damaged, and so the process of preparing him surgically for dialysis began, first with a catheter port in his upper chest and later with a fistula in his right arm, which took two surgeries to install.
An arteriovenous fistula is an artificial connection between an artery and a vein in either the arms or legs that serves as a site at which blood is drawn into the dialysis machine for cleansing and then returned, according to healthsquare.com.
Expensive Medicines
One of the medications Guay needs to take is Renagel.
Prices vary but it's in the $350 to $325 range for a 30-day supply of 180 pills, Guay said. The drugs Renvela and Renagel are similar for the control of serum phosphorus in patients with chronic kidney disease on dialysis.
He was paying $30 a month.
He receives Medicare benefits and has a secondary insurance plan, but when his pharmaceutical expenses reached $2,500 around April, government policies created what is known as the doughnut-hole kicked in, and his insurance stopped paying until he reaches $5,000.
If it wasn't for some samples of Renvela left at the center that he gets week to week, he would have to go without it.
Guay said he can't afford them on his monthly income of less than $1,000.
"When I go for dialysis I get five or six needles, iron, other things," Guay said. "It's included in the plan; the government covers that. But it doesn't include the pills, the Renagel, you've got to have it. That's my beef. It should be included in the plan."
He has no complaints about the center, however.
Dialysis Changes Everything
David McDonald is a social worker with Fresenius Medical Care. He has been helping Guay and other patients to receive medical benefits, get Medicaid and get free or low cost medications from the National Kidney Foundation and drug companies.
"It's a devastating change because now you are committed to coming three days a week for treatment and it's three to four hours per treatment," McDonald said. "The cost of the medicines is horrendous. You're not certain you're going to qualify for a transplant by the time you get to the point where you need dialysis.
"You can live if you adhere to the treatment schedule. If you don't, it has a negative impact on your life expectancy, if you miss a treatment.
"When you're on the chair, sometimes you have cramps but you can't just get up because you have a needle in your arm, so you can't move around - you could injure yourself. You have to call someone to disconnect you just so you can go to the bathroom or something like that."
Guay agreed.
"Being on dialysis changes your life completely," said Guay. "I could have gone to Boston recently and visited with my family. But you have to plan everything ahead, arrange for dialysis ... It puts a burden on the family."
One Year For Debby Mapp
At the end of July, Debby Mapp, 52, of Tanglewood will celebrate her 53rd birthday while sitting in a dialysis chair. She began her dialysis treatment the day after her 52nd birthday, she said.
A diabetic, her story as a kidney patient began about eight years earlier in Virginia when a doctor there said she eventually would need a kidney transplant. It was about that time she began losing vision in one eye and peripheral vision in the other eye. She fought the good fight keeping her creatinine levels low for five years.
Her husband, Tom, was tested and learned he was a match and could donate a kidney. He planned to give her one of his kidneys. However, during that five-year span, he developed a genetic blood disease and learned in November he was disqualified as a donor.
"Dialysis patients try to cram seven days into four, because dialysis treatment days are basically a wasted day," Mapp said.
"Dialysis is very demanding. You have to rearrange your whole life around it. Running to the grocery store, going to the bank, going to a doctor's appointment; you have to do that."
She avoids large crowds because she doesn't want to get her arm bumped or catch a cold. She carries Purell hand sanitizer.
"You don't want to catch a cold or virus because that can affect your dialysis treatment," she said. "Even when you feel bad, you can't just not have it."
She's grateful for her husband's good insurance that pays a big chunk of the bill.
"If you do what the doctor's tell you to do you can live a long time on dialysis," Mapp said. "It's a struggle. Dialysis is not a cure-all for what ails you."
Keeping The Faith
Faith and hope go hand-in-hand and Oliveros described Mapp as "the expression of hope."
"She is a young person who for reasons beyond our understanding developed this terrible disease," he said. "She turned around and changed her life 180 degrees and became the most compliant, most wonderful human being. I've seen patients and wondered why we didn't meet 15 - 20 years ago; it would have been a different story."
He said he desperately hopes she gets her a transplant.
Mapp is on the list for a kidney with Tampa General Hospital, and sits in the dialysis chair three times a week, waiting and hoping.
She pointed to her fistula.
"This is my lifeline," she said. "I can no longer have blood pressure taken in this arm. I can no longer test my blood sugar in this hand - you run the risk of getting an infection; you can't have any shots, you can't have any I-Vs in that arm."
What does she think of when she's sitting there?
"I'm bored," she said, as husband Tom burst out with laughter. "I've got an iPod. It holds 1,000 songs. So far I've loaded 933. Everyone has a little TV. Some of us bring DVDs..."
She said it's uncomfortable sitting for three and a half hours with her arm held out straight. Her shoulder and elbow begins to lock up but she can't bend it or turn it.
She is limited in her consumption of liquids to about a liter per day. That includes drinks and foods with liquids in them like melons.
In her year at the center she knows of five patients who have died and maybe a sixth. But it doesn't dim her hope of getting a normal life back.
"I definitely feel I'm going to get a transplant," she said. "I don't know when or where or how, I know it will be in God's time."
Joe Seelig can be reached at 386-5834 or jseelig@highlandstoday.com
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