One Woman on Both Sides of Dialysis

[David13]

One woman on both sides of dialysis

A room of her own should have been nirvana.

April Wiggins was 15, the oldest of four girls. But in her case, the privacy came at a steep price. Two years earlier, she’d been diagnosed with lupus, a chronic autoimmune disease that had ruined her kidneys.

The specially vented bedroom was needed for her dialysis machine.

Every night, she hooked herself up at 8 p.m. so the machine could cleanse her blood of toxins during the next 10 hours.

She couldn’t go out with friends, or on dates, and even felt isolated from her own family as she retreated to her room.

Two decades later, she’s still in that world of dialysis.

Now 37, the Chesapeake woman knows the persistence of waiting for a kidney transplant, the elation of being free from the machine, the heartache of coming back when the kidneys fail again.

She knows the camaraderie of other patients sitting next to her in dialysis centers, the hope that tethers them to the machines, the help she now gives when she tends to them as a dialysis nurse, when she’s not hooked up to the machine herself.  |  See Dialysis, Page 8

Wiggins lives on both sides of a procedure that a growing number of people are experiencing across the country.

In Virginia alone, almost 10,000 people are hooked up to similar devices, as they wait for kidney transplants or depend on the machines when their own organs give out.

That’s a 36 percent increase from a decade ago, according to statistics from the Mid-Atlantic Renal Coalition, and it’s a number that’s expected to grow.

The biggest force driving people to dialysis is diabetes, fueled by the nation’s obesity epidemic. High blood pressure is the second-leading cause. And as America ages, the simple correlation between age and kidney disease also pushes up the statistics, said Nancy Armistead, executive director of the Mid-Atlantic Renal Coalition.

Improvements in dialysis safety have also lengthened the life expectancy of people on dialysis.

“We’ve had patients on dialysis for 30 years,” Armistead said.

End-stage renal failure is a condition that affects blacks disproportionately.  Rates of diabetes, high blood pressure and lupus run higher in the black population.

In Virginia, blacks make up more than half of those on dialysis. At Sentara Norfolk General Hospital, 60 percent of the people on the kidney waiting list are black.

Wiggins is one of them.

Wiggins was 13 years old and living with her family in Tennessee when she started feeling tired and listless. She didn’t feel like eating anything and lost weight.

“It was summer, and my mother just thought I was being lazy.”

One day, though, she became lethargic and feverish,  and her mother took her to an emergency room. From there, she was transferred to a children’s hospital in Memphis.

Tests over two weeks revealed lupus, an inflammatory disease that damages the immune system. In Wiggins’ case, antibodies in her body attacked her kidneys.

She was treated with chemotherapy and medications, but two years later, her kidneys failed.

Her family lived in California by then, which is where her first machine arrived.

She used what’s called peritoneal dialysis. The machine she was hooked up to at home cycled a special solution through a catheter into a cavity in her abdomen. The solution absorbed extra fluid and waste from the blood, and then drained from the abdomen back into the machine.

The 10-hour overnight sessions freed her from treatment during the day so she could go to school, but every night it was her and the machine.  “That cut out sleepovers.”

She felt self-conscious about being on dialysis and wore baggy clothes so people couldn’t see the catheter in her  abdomen.

“We moved a lot, so I didn’t tell a lot of people about it.  I kept it to myself.”

When she was 17, she started going to dialysis centers instead of continuing the home treatments. Most of the patients around her were decades older. 

“I was the baby, and they spoiled me.”

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When she was 20, her name was called for a transplant.

The kidney was from someone who had died. Her mother was not a good candidate to donate one, and her sisters were too young.

She remembers the joy of going to the bathroom after the transplant, something she hadn’t done for years because her kidneys weren’t producing urine.

She smiles even now, remembering the moment. She also could eat food she’d been restricted from during dialysis, such as beans, milk, cornbread.

The kidney was not a good match, however, and three and a half years later, it failed. The machine was back.

By this time, she was living in Mississippi, attending nursing school. Instead of reading magazines in the dialysis chair, she studied .   

In 1999, her name was called again, and this was a better match – a perfect one.  Once again she knew the joy of living free from needles and three-times-a-week dialysis schedules and diet restrictions.

Her  kidney doctor  suggested she become a renal nurse, since her personal experience would help. When she became a registered nurse in 2002, she drove straight to a dialysis center to apply for a job.

She moved to Hampton Roads several years later because her boyfriend is in the Navy. Soon after, she began to feel the tell-tale signs of her kidney failing: fatigue, swelling, weakness.

By September  2007 she was on both sides of the dialysis chair.

“I think both times I went through depression, but not as long a period the second time as the first. I knew it was coming. I mentally prepared myself.”

She thought about getting a job in a different field, but didn’t want to make a change while adjusting to life on dialysis again. Soon she realized she had something to offer others on the treatment.

They would seek her out.

“We share our war stories, 'How many accesses do you have?’ ” she said with a laugh.

The scars running up and down her arms attest to the ports of entry for the dialysis catheters she’s had over the years.

Seven. ---------------------

It’s a world within a world, a place where people sometimes spend more time with nurses and the patients around them than their own relatives.

At 4 p.m. on a recent Monday, Wiggins checked the temperature and blood pressure of 60-year-old John Uraih at DaVita Midtowne Dialysis in Norfolk.

Wiggins looked the picture of health and professionalism – in blue scrubs, mask, safety glasses, gloves – as she bustled between chairs of people who sleep or read or chat with patients and nurses.

“I can tell them things, and they’re more apt to listen, because they know I sit in the same chair. I fuss at them, but I also know it’s hard.”

Uraih, a Norfolk pharmacist, has been on dialysis since February. He’s had diabetes for three years. His wife has volunteered to give him one of her kidneys, so he hopes to be off dialysis soon.

He and Wiggins have this in common: They both work, not an easy feat for people who go to dialysis three times a week, several hours at a time. But work is something social workers and doctors urge in patients who can, as a way to make life more normal.

The home dialysis machines are smaller now than when Wiggins was a teen, and they’re easier to use. Centers have more options. For instance, the relatively new “nocturnal dialysis” allows people to go to a center at night and sleep during the procedure.

Shifts geared toward people who work start later in the day.

DaVita, the largest provider of dialysis in the country, has gone from about 400 centers nationwide a decade ago to 1,475 today. That’s not just a function of the growing need, but the expansion of bigger companies that enjoy economies of scale.

Unlike most medical procedures, Medicare pays for more than 90 percent of the people on dialysis, even those under 65. That makes it a major and growing Medicare expense, and Armistead suspects it will be a target health-care reformers will look at in terms of reducing costs. ---------------------------

Wiggins works two 16-hour shifts a week at the Norfolk center, which gives her time for her three sessions at the DaVita Great Bridge Dialysis Center in Chesapeake.

One day earlier this month, she sat among 20 others in chairs in two large circles. By the end of the day, about 80 people came through in three different shifts.

Most were older, but some were her age. Some were wrapped in blankets – the body cools when the blood drains out – and had magazines or word puzzles or books in their laps.

Time spent in these chairs sustains life, but also reminds Wiggins of her tenuous link to it, especially when people in the chairs around her don’t return.

“It makes you think about your own mortality. You try and separate yourself, but it makes you think of your own situation.”

Wiggins said people have the misconception that people on dialysis are at the end of their lives, but many live for decades on dialysis.

And death is not the only reason people leave the dialysis chair. Sometimes, the phone rings with the news that a kidney is available.

That’s cause for celebration, and invariably, a question in the minds of those who wait: When will my time come?

Some 80,000 people in the country await a kidney. That’s double the number 10 years ago.

In Virginia, as of Friday, 2,1 75 are on the list. At Sentara Norfolk General, 4 73.

Wiggins has waited two years. About 200 on Norfolk General’s list have waited as long or longer.

She doesn’t want to ask her sisters for a kidney, even though living donor transplants are more successful.

“I would be devastated if something happened to one of their kidneys, and they had donated a kidney to me. The odds are not that high, but I couldn’t take that risk.”

Two kidney transplants and a multitude of blood transfusions over the years have created antibodies in her body that make Wiggins difficult to match.

She is realistic about her chances, but she also doesn’t lose hope for the day when she can eat cornbread to her heart’s delight, and get in a car and drive off without worrying about scheduling a dialysis treatment at her destination.

“You learn to enjoy things as they happen, instead of thinking about what’s ahead. I don’t dwell on wondering when my number will be called. But when it comes, I’ll be ready.”