Life-Saving Regimen - 31 Years on Dialysis

Life-Saving Regimen - 31 Years on Dialysis

Web Posted: 05/06/2007 01:47 PM CDT

Paula Hunt
Express-News

When Dolores Muhlstein says goodbye to William, her husband of 50 years, gets into her Ford truck and heads to the Kidney Disease Clinic of San Antonio, where she will settle into a padded blue recliner for 33/4 hours, she is repeating a ritual she has been following three times a week for 31 years.

Muhlstein, 69, receives dialysis treatment that replaces the job her kidneys stopped doing a long time ago.

"I never missed a one," says Muhlstein, of her Monday-Wednesday-Friday schedule. "I may have changed a date for an emergency or a funeral or something like that, but it still was the three-times-a-week regimen."
Slide Show
Dolores Muhlstein at the Kidney Disease Clinic

Muhlstein is one of the more than 335,000 people on dialysis in the United States, according to numbers from the U.S. Renal Data System. But very few have survived as long as she.

Her perseverance and commitment to her treatment are rare, says one of her physicians, Paraic Mulgrew.

"It's a tribute to Dolores as a person," says Mulgrew, a nephrologist with Renal Associates in San Antonio and medical director of organ transplant services at Christus Transplant Institute.

Dolores Spies grew up on her parents' 100-acre farm near Hallettsville where she was her father's right hand, managing the cattle, pigs, chickens and turkeys and helping out with other chores, including preparing the fields for planting corn.

"I'd come home from school about 4 or 4:30 or so and he'd turn the tractor over to me," she says.

Her battle with kidney disease began when she was 16, after she suffered an adverse reaction to medication administered for a sinus infection.

"Back then, penicillin was the miracle drug, and they give it to me straight and strong," says Muhlstein. "They said, 'We're going to get (the infection) knocked out.'"

Instead, the antibiotics knocked out her kidneys. Not that anyone let her know what was wrong.

"The doctors wouldn't even tell me what it was or what was happening," says Muhlstein.

It wasn't until nearly seven years later, when her doctor in San Antonio sent for her medical records and discovered the source of her poor health, that she learned she had kidney disease.

But while she now had a name for her condition, the diagnosis didn't come with any therapy other than bed rest. In the early 1960s, dialysis was in its infancy and not widely available, and organ transplants were extremely rare.

Over the next 22 years, her kidneys slowly shut down. Slowly failed at their job of filtering toxins and excess fluids from her blood. Failed to regulate the chemical balances in her body.

It made her sick, it made her tired. If there was a cold going around, she'd catch it. She was told it wasn't safe for her to have children.

Her doctors couldn't predict when her kidneys might quit completely. It could be tomorrow, it could take years.

So Muhlstein lived every day not knowing.

The organs finally gave out in 1975 during a visit to New Orleans.

Rushed to the Hotel Dieu Hospital (now University Hospital), Muhlstein was put on dialysis for the first time.

Every day for the next two weeks, she was hooked up to a machine that replaced the function of her failed kidneys.

Dialysis saved her life, but it was not a cure.

"The concept at the time was that people did not live longer than two years on dialysis," says Muhlstein. "I was depressed. It was rough."

But after six months Muhlstein started to feel better and, when she passed the ominous two-year mark, she made herself a promise.

"When I made two years and I wasn't dead, I said, 'I'm going to beat this,'" she says. "From then on, I started trying to learn everything I could about dialysis."

Mulgrew cites Muhlstein's hands-on approach as a positive example for other dialysis patients.

"Dolores has always been involved in her care," says Mulgrew, who has known her since 1980.

"Because she has been able to play that role and have an influence in every aspect of her life and decision process that's going on, she really has control and that sense of control is often vitally important for dialysis patients."

Dialysis can be boring and tedious. It requires being attached to a machine for almost four hours a day, three days a week. The cool, quiet room at the Kidney Disease Clinic in the Medical Center area is filled with dozing patients and roving technicians and nurses.

Muhlstein brings a large mesh bag with a pink blanket, a pillow and popcorn to her sessions. Sometimes she'll watch television or talk to the person in the chair next to her. She likes to note that she's been on dialysis longer than some of the medical staff at the Kidney Disease Clinic have been alive.

Over the years, she's seen a revolving door of patients. There have been college students waiting for transplants and Lyndon B. Johnson's ranch manager — "All kinds of people from all walks of life," she says.

The drill on arriving is always the same: Muhlstein weighs in, has her standing and sitting blood pressure checked, a nurse listens to her heart and lungs and checks her ankles for swelling that would indicate fluid retention.

Then a technician helps her unbutton the right sleeve of her pressed pink blouse to reveal the thick, purplish rope-like vein running down her arm where her fistula is located. The fistula, where large blood vessels are joined by surgically connecting an artery to a vein, serves as the access for the needles that connect to soft tubes that channel blood to the dialysis machine and back to her body.

Remarkably, it is the same access she has had since she began dialysis 31 years ago.

She places a pillow under her arm and gets comfortable as blood filled with toxins flows out of her artery, is pumped through the dialysis machine and then returns — purified — into her vein.

"My part-time job to stay alive," she calls it.

Her husband, William, who's not one for talking much, says with a smile, "She's a pretty fair patient."

Mulgrew says that's an understatement.

"Taking care of oneself in the sense of attending dialysis, taking your medicines and being careful about choices in terms of diet become very important in ensuring longevity of dialysis," says Mulgrew.

"Dolores did everything that she was supposed to."

Muhlstein says she's lived as close to a normal life as possible. It has only been in the past seven years that health problems have started to crop up. There was colon surgery in 2000, then surgeries for carpal tunnel syndrome, glaucoma and cataracts. A treatment that was supposed to remedy the pain in her back left her slightly bent. Her hands are bumpy and knotted from arthritis and amyloid deposits.

It is these afflictions that bother her, not the kidney disease. She came to terms with dialysis a long time ago.

"When I started, I pretty much had to accept that I'd have to do it for the rest of my life, but that didn't come overnight," she says. "To keep your spirits going, you've got to work at it."

It is rare for someone to be on dialysis as long as Muhlstein, since today the preferred method of treatment for end-stage kidney disease is transplant. Although given an opportunity for a transplant about 25 years ago, she turned it down.

Mulgrew says she made the right decision, since at the time the procedure came with a high rate of failure.

"Dolores (was) seriously concerned about the risks of a bad transplant," says Mulgrew.

"She was able to say, I can handle this dialysis and I'm not going to let it overcome me. In that sense she had inner strengths that people often don't have."

Muhlstein is content with the life she's lived being a homemaker, gardening, crocheting and making her own clothes.

She and William still live in the little beige house they bought in 1960 when he worked at the Carnation plant on Ashby Place and Blanco Road. They like to drive to Hallettsville to visit friends and relatives and take flowers to the cemeteries where their parents are buried.

"He's been good to me, I've got to give him credit," she says of William. "If it wouldn't be for him, I couldn't have made it."

Asked if she has any regrets, she laughs.

"What I really wanted to do was go dancing and he don't know how to dance and didn't want to learn," she says. "I would've liked to dance through this world with a husband who knew how to dance."

She may not have danced through life, but Dolores Muhlstein certainly took the lead when it came to living it.

phunt@express-news.net

Facts about kidney disease
•Kidney disease is the ninth-leading cause of death in the United States
•20 million Americans — 1 in 9 US adults — have chronic kidney disease and another 20 million are at risk to develop it
•The leading causes of kidney failure are diabetes and high blood pressure; they account for 60 percent of new cases
•About 30 percent of those with Type 1 diabetes and about 10 to 40 percent of those with Type 2 will eventually develop end-stage kidney failure
•Between 1990 and 2000 the number of people with kidney failure requiring dialysis or transplantation almost doubled, from 180,000 to 380,000.
•African Americans, Hispanics and Native Americans are a particularly high risk of developing kidney diseaseSource: National Kidney Foundation, United State Renal Data System; National Institute of Diabetes and Digestive and Kidney Diseases