Simi Valley's Winnie Tapper attains a rare feat: 40 years on dialysis
Brett Johnson
May 19, 2013 (Ventura County Star - McClatchy-Tribune Information Services via COMTEX) --
Last month, Winnie Tapper celebrated a milestone anniversary of something that at first made her cry.
That was years ago, her very lifeblood in the balance, facing a treatment she'd never heard of as well as a new way of life.
For 40 years now, she's watched a machine and two needles siphon her blood away and give it back to her, cleansed. She's endured sicknesses, bad days and close calls. "And here I am," she says with a smile and cheery laugh.
Some of her friends think her 40 years on continuous dialysis is a world record, and it might be. In April, they threw her a "40 Years on Dialysis" party at Lost Canyons Golf Club. The National Kidney Foundation sent her a certificate to mark the occasion; it's now up on a bedroom wall at her Simi Valley residence.
But this was, and is, no pity party. Tapper, who turned 69 on Saturday, won't have anything of the sort.
"The 40 years to me, I'm not interested in people saying, 'Oh Winnie, that's great,' " she said. "I'm not into it for self-pride. I want this to tell other patients not to give up hope."
She's seen a lot in four decades hooked up to a dialysis machine. For the past 23 years, that's been done at a small clinic, now called DaVita Simi Valley Dialysis, across the street from Simi Valley Hospital. She's there every Monday, Wednesday and Friday.
Some people are angry they're on dialysis, she noted. Some view it as a death sentence.
"So often," Tapper said, "they feel their life is over. But they have a second chance at life. They have this attitude, 'Oh, I can't do anything anymore.' That is not true."
She repeated that last sentence, then continued, "People feel that they have to give up the things they love. But you don't have to stop your life. You just have to make different arrangements."
Through the years, she worked. She taught kindergarten and other grades for 31 years at Vista School in Simi Valley, retiring in 2000.
She's also bicycled, roller-skated and snorkeled. She's traveled to Europe and many points elsewhere.
Overseas, she made appointments to use dialysis machines. Social workers are available to help you, she noted. She's aware of cruises that feature onboard dialysis.
About Mondays
None of this is to say she doesn't have bad days. She'll feel sick for a few days, then OK, then sick for a few more. She can feel "really good" one day and "very terrible" the next.
By her count, she's almost died four times, mostly from renal-related infections. Once, in the early 1980s, she had a bad infection in her fistula, an enlarged vein-artery-blood vessel area where the needles are inserted.
"I was hemorrhaging badly," Tapper recalled. "My blood pressure was dropping. It was a close call."
She has extra reason to commiserate with that old Boomtown Rats hit "I Don't Like Mondays." By the time Mondays roll around, the wastes in her blood have had an extra day to build up since the preceding Friday sessions. On Mondays, friends drive her to dialysis.
No, she said, she doesn't have bouts of depression.
"At times, I do get down," Tapper said. "But it just doesn't last that long. I think it's a waste of time to feel sorry for yourself. You have to take every day as it comes, and you have to work at it."
Her parents -- Tapper is of Japanese descent, born in Hawaii -- were positive people.
"That's the way I was brought up, and I've brought that to my dialysis," she said. "And my faith has kept me in a positive way, too. My philosophy has been: 'Pick yourself up and move on.' "
Welcome to the machine
Three days a week, for about three hours each session, Tapper undergoes hemodialysis, the predominant form of dialysis.
About 415,000 people across the nation are on dialysis, per latest figures in the United States Renal Data System. Almost 93 percent of them use hemodialysis; the other 7 percent use what's called peritoneal dialysis, in which the blood is cleansed within the body, using a tube and special fluids flushed into the abdominal cavity, which acts as a filter.
In hemodialysis, two needles are inserted into her fistula; one takes blood to the dialysis machine and the other returns the cleansed blood to her body. Tapper's blood is pumped through a machine filter made up of thousands of hollow fibers.
Wastes, excess fluids, salts, other chemicals and toxins are removed from the blood as it passes through the fibers -- the machine is taking over the job kidneys normally do.
It takes about 15 to 20 minutes for her blood to cycle through the machine once, Tapper noted, meaning it turns over about 10 times each session. She pointed out the needles, the pump and the machine, much of which is monitors.
One expressed the blood flow rate as 450 milliliters per minute this day. Right below it was her blood pressure, 124 over 78. Above and to the left, the hours and minutes left melted away slowly but inexorably -- 2:35, 2:33, 2:29 and so on.
Nurses and assistants scurried among Tapper and the dozen or so others stationed at machines along the long corridor, checking readouts and asking questions.
Tapper gently rapped the side of the machine with her frail hand and said, "It's given a lot of people a second chance at life."
Other than a "bad pinch" from the needles, Tapper said she doesn't feel anything during dialysis. She relaxes and usually watches TV. Sometimes, she jumps on the computer. In the old days, she said, laughing at the memory, she used to correct her students' papers while a different kind of red flowed in and out of her body.
The main effect from this blood cycling is feeling tired at the end of each session.
But it is easier, she sighed, than in the old days.
Kidneys under assault
Tapper was in her late 20s when things went wrong. A nasty strep infection attacked her kidneys, or at least that's what her doctors thought. It likely was a series of such attacks, each one damaging them more until the diagnosis came in: kidney failure.
"I couldn't breathe," remembered Tapper, who was living in Woodland Hills at the time, 1973. "I had to lie flat on my bed. I hadn't even heard of dialysis."
Dialysis was still in relative infancy. It was invented in the 1940s but didn't become widespread as regular treatment until the 1960s. Before that, Tapper said, many kidney patients were sent home to die.
Her dirty blood wasn't the only shock to her system. Back in 1973, she was on dialysis for eight hours per session. Initially, she was dialyzed at home with the help of a nurse. The long hours were disruptive.
She recalled getting off school at Vista around 3 p.m., going home, jumping on the dialysis machine, getting in bed by maybe midnight, only to rise around 5 a.m. to get ready for the next school day. Repeat several times each week, ad nauseam.
"It was really tough," she said. "I did a lot of crying at the start."
Over time, she brightened her outlook. Technology marched forward. The dialysis time, as she ticked off, has gone from eight to six to four to her current three hours per session.
"They have greatly improved the process," she remarked.
Tapper weighed a kidney transplant a few times, most recently about five years ago. But, citing possible rejection and the possibility of long illness, she concluded it's too risky.
She still has her kidneys but they function at low levels; she typically loses about 6 or 7 pounds of fluid per dialysis session.
One of the hardest parts about dialysis, she noted, is controlling amounts of fluids she drinks. Most people, she noted, drink a can of soda without thinking about it; she has to. The kidneys regulate fluid levels, done in part by controlling urinary output, and set a water-chemicals balance in the body.
Aside from fluids, Tapper also must watch salt amounts, because that stimulates the urge to drink; potassium levels (involved in controlling muscle movements, including the heart); and phosphorus intake -- too high, and it can take calcium away from bones, key because normal kidneys help produce calcium.
Life is the sweetest number
Tapper said her 40th party was as much about her thanking all the friends who have helped her with those countless little things: rides somewhere, help getting groceries, sitting with her when she was sick and such.
One of them, Wanda Landis, worked with Tapper at Vista School. She remembers Tapper as a wonderful teacher who treated her students as her own kids.
"She's an inspiration to all of us," Landis said.
Some want to get Tapper in the Guinness Book of Records. There, the longest time surviving on hemodialysis is 33 years, but the site cautions that records might have been broken since publication.
Elsewhere, it's murky. A paper published in 2012 in the Oxford Journals, an offshoot of Oxford University, indicated instances of people surviving longer than 30 years, but very few in the 40-year range.
Almost all those, the paper indicated, involved at least one kidney transplant at some point. Other factors include young age at inception, normal blood pressure and lack of diabetes.
It cited one instance of a man living on hemodialysis for 43 years and another who lived just past 40 years, but also noted that long-term survival has received little interest scientifically and is mostly anecdotal or based on media reports.
The National Kidney Foundation's New York headquarters called Tapper's feat "remarkable" and "very unusual." One physician there said she'd never heard of a 40-year survivor on continuous dialysis.
Tapper noted the rarity in the United States and Europe but believes some people in her root country Japan have lived 40 years on dialysis.
But, she added, all that hoopla revolves around a mere number. She's alive.
"I'm still walking and talking and living my life with some quality," she said. "The fact that I'm still up and driving and bopping around, that's the miracle to me."
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