I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on May 25, 2008, 11:30:07 PM
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Life on DIALYSIS
Everyday coping, prayer help kidney patients manage, thrive
By Doug Pullen / El Paso Times
Article Launched: 05/26/2008 12:00:00 AM MDT
There's a "Wall of Fame" about 8 feet wide by 4 feet deep at the DaVita Cielo Vista dialysis clinic at 7200 Gateway East.
It's adorned with photos of the more than 130 patients who get their blood cleaned there by a dialyzer, a sort of mechanical kidney. Using a "Deal or No Deal" theme, based on the TV game show, it highlights what they are doing well and what they need to work on.
"It's all about educating the patients about what's good and bad," said Irene Sandoval, facility administrator.
The wall isn't unique to the clinic. All 10 DaVita clinics in the El Paso area have one, part of an annual competition that the chain -- which treats about 1,200 patients locally, 103,000 nationally -- uses to promote better health and education for patients living with kidney failure.
Chronic kidney failure is diagnosed when function is 15 percent or below, according to the National Kidney Foundation. It estimates that 26 million Americans "currently have chronic kidney disease and millions more are at risk," according to its Web site, www.kidney.org.
Because obesity, diabetes and high blood pressure are on the rise, those numbers are bound to climb, the National Kidney Foundation says.
About 341,000 people are on dialysis, according to the National Kidney Foundation, of whom 75,000 are awaiting kidney transplants.
In El Paso, 1,662 people are on dialysis, said Glenda Harbert of the End Stage Renal Disease Network of Texas Inc., which monitors dialysis clinics in the El
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Paso area and elsewhere.
"El Paso has a huge end-stage renal disease population," Sandoval said.
We spoke to two El Pasoans on that "Wall of Fame" to learn more about life on dialysis and to encourage others who might have kidney disease to get help (see box at left).
Mary Lopez
Age: 64
Dialysis: 23 years
Warning signs: She didn't have some of the classic symptoms of kidney failure. "I didn't feel sick. I wasn't throwing up," she said.
But she did start to have swelling in her legs. "I didn't pay attention," Lopez said. The swelling spread to the rest of her body. Her weight ballooned from 128 to 180 pounds in four months. Lopez couldn't understand what was happening.
"I used to run," she said. "I used to go to the spa. I used to go to exercise classes. I (didn't) understand why this happened."
Her doctor theorized that an untreated infection spread to her kidneys and eventually shut them down.
Diagnosis: "I went to the doctor and he told me my kidneys weren't working," she recalled. "I was devastated. I couldn't believe it. I used to cry every night."
Treatment: Lopez went on dialysis in 1985. She tried peritoneal dialysis, which allows the patient to dialyze at home through a tube placed in the abdomen. She got a "bad infection," though, and had to switch to hemodialysis, which typically takes place in a clinic (though there is a home version of the treatment) with a dialyzer, a machine that cleanses the blood of toxins and other excess substances that normal, functioning kidneys usually filter out.
She had a transplant in 1990 at a hospital in Dallas, but it failed on the day of surgery, leading to an infection that forced doctors to leave open her surgical wound. "It didn't close until I came back to El Paso," she said.
She's been a patient with DaVita for 18 years, having dialysis three times a week for 3ĺhours. "Thank God, I'm doing pretty good," she said.
Lopez said she feels best on the days after dialysis, when she has the most energy. "I go outside. I have roses. I love roses, so I cut off the dead ones, water the grass, come inside and see if the wash is ready to put in the dryer. I keep myself busy," she said.
Diet: Dialysis patients have to watch what they eat and drink so that their body chemistry is kept in balance. It "requires discipline," Lopez said, noting that she limits the amounts of foods high in sodium, phosphorous and potassium (also known as electrolytes).
"I can't have avocados and potato chips, but sometimes I do," she confessed. "I love bananas; I still eat them." But, she added, she restricts how much she eats and follows an eating program designed by Cielo Vista dietitian Carolyn Peaslee.
Living with dialysis: Lopez has been on dialysis for one-third of her life and will be on it for the rest of her life. She's philosophic about it. "At first, I used to say, 'Why me?' But, you know, you have to cope with it. You really do," she said. "You try to cope with it everyday, but to me it's just like any other day. I'm thankful that I'm here. It's been 23 years. Some people don't last very long."
Victor Cordova
Age: 42
Dialysis: 20 years
Warning signs: Cordova had a lot of colds as a child and remembers "having a lot of sore throats," possibly strep throat. "I was swallowing the bacteria all the time thinking, 'Just get over it, it's just a cold.' " His mother insisted on taking him to physicians in Juárez who would say, " 'Just give him this or give him that,' " he recalled. "Nobody would give me an exact diagnosis of it."
As a teenager, Cordova noticed that his urine grew darker "like a tea color. The doctor said I was bleeding from somewhere inside." He also remembers having a lot of bloody noses.
Diagnosis: "I was 13 when this started, around 16 or 17 when things really started getting bad," he said. What he didn't know was that his kidneys were slowly shutting down, a condition that was diagnosed after one of his Juárez doctors referred him to a specialist.
"Little by little the kidneys gave out. It didn't really happen fast," Cordova said, a condition known as chronic kidney failure, in which the kidneys don't heal (acute or sudden kidney failure sometimes can be temporary).
Treatment: Cordova has had both peritoneal and hemodialysis, going to DaVita's Cielo Vista clinic three times a week for up to four hours at a time. He usually sleeps through it.
"The dialyzer removes not only (excess) fluids, but vitamins and minerals that your body is using," he said. "Sometimes when you get off (the dialyzer) you're really tired and your blood pressure drops ... you just feel kind of drained, like you've been running several hours."
Cordova has had two kidney transplants, both of which failed. The first one in 1987 lasted eight years. "You go pretty much to a normal state; you become a normal person. The only thing you realize is you have to go to the bathroom more often," he said.
The second, in 1995, lasted only three months. He contracted coccidioidomycosis, better known as valley fever, a soil-borne illness common in the Southwest.
"They said if you keep the kidney, the cocci will kill you," Cordova remembered. "If you keep the cocci, you'll be able to control it but you'll have it forever."
As a result, he's on "constant medication for the rest of my life," which precludes him from receiving a third transplant. It's hard, he said, because he has trouble holding a job and his wife has her hands full with her ill father. Cordova, who gets by on Social Security disability, fought back tears as he recalled a recent argument with a relative.
"I told him this is my work, and he starts arguing with me about the definition of a job, work, so I looked it up and it said, 'Work equals the amount of effort you put into it,' " he said. "He got (upset) ... but he's talking about employment. I'm talking about living."
Diet: He works with Cielo Vista dietitian Peaslee to limit his intake of electrolytes such as sodium and potassium. "You're supposed to stay away from the highest amounts of phosphorous and potassium, but since everything has them, you just have to stagger what you eat," he said. "If I have beans in the morning, I can't have them in the afternoon. If you have a medium banana in the morning, you can't have another one for the rest of the day or until you've dialyzed."
Living with dialysis: Cordova said he was wild and did drugs in his younger days, but he cleaned up his act when his kidneys began to fail. He became a born-again Christian and said it's his faith that gets him through each day.
"The only thing I've used is constant prayer," Cordova said. "It could be worse. I could be dead. That's the way I look at it."
Doug Pullen may be reached at dpullen@elpasotimes.com; 546-6397.
Warning signs
# Diabetes and hypertension are the two main causes of end stage renal disease, said Carolyn Peaslee, a dietitian with DaVita Cielo Vista.
# Many El Pasoans who may have kidney disease wait too long to get it checked, said Leticia Rosales, peritoneal dialysis coordinator for DaVita's Cielo Vista and Mission Hills offices. "Especially in El Paso there are a lot of patients who wait until they are in the emergency room" to get treatment, she said.
# They suggest calling your primary-care physician if you have all or most of the warning signs of possible kidney failure. "It's important to get checkups and discuss family history with their doctor," Peaslee said, noting that self-awareness and contacting your physicians are the first lines of defense.
# Peaslee, Rosales and the National Kidney Foundation say these are warning signs to look out for:
# Fatigue and weakness.
# Itchy skin.
# Nausea and vomiting.
# Appetite loss.
# Dramatic weight gain or loss.
# Gastrointestinal changes (such as diarrhea or constipation).
# Swollen ankles.
# Difficulty concentrating.
# Bloody or foamy urine.
http://www.elpasotimes.com/health/ci_9379805
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The irony in this article is perfect: Now that DaVita has been exposed for murdering patients because of the sloppy way they have been running their dialysis facilities in Texas, we have to hear about how they have a big sign condescending to patients about who is behaving and who is not, according to their adherence to the treatment regimen. What about an even bigger sign for DaVita itself, measuring how much it is cutting corners on the Medicare requirements for dialysis as a function of how much they are increasing profits for their fat-cat investors?
The unfortunate undertone in this article is its feeding the myth that if only people took care of themselves and went to the doctor on time, they could avoid endstage renal failure. In fact, most kidney disease is not preventable, and if a patient presented at the doctor's office with the warning signs described, the only thing the monstrously dumb medical system could do would be to calculate the number of months, weeks, or days left before the patient would have to begin dialysis.
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Stauffenberg, I have to post because I agree with 90% of what you wrote. I do think that a lot of the fall out from the Lufkin deaths will be spin. It makes me sad.
But the 10% where I disagree with you is CKD education. Some people could stave off/or prolong starting dialysis by monitoring BP and or making dietary and lifestyle modifications - those 10% (I am guessing at this number but I do believe it is a small percentage) could benefit from education.
Even though my PKD is genetic and I was symptomatic early in life, I hovered at 15% function for years - and I truly believe if I had been more diligent with diet & exercise, I could have bought a bit more time.
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Meinuk, because you told me about being at 15% for several years, you gave me great hope. I think CKD eduacation and IHD is helping stay at the level I am and I am going to fight to stay here for as long as I can. Wish I had known more when I was at 30%!