They share life with a machine

They share life with a machine
Lithonia couple pioneers in home kidney dialysis

By Phil Kloer

The Atlanta Journal-Constitution

Wednesday, March 18, 2009

To folks who don’t care for needles, the 15-gauge sticker that Schelorrey Tubbs has prepared looks like a harpoon. But her husband, Horace O’Kelly, doesn’t even flinch as she guides it smoothly into his left bicep.

After several minutes adjusting tubes and clamps, Tubbs has the couple’s home dialysis machine hooked up to O’Kelly and it begins to thrum softly and rhythmically, like a clothes dryer but higher pitched.

For the next three hours, he will lie in his recliner as the sun filters through the blinds of his Lithonia apartment window, having the waste filtered from his blood. It’s a job a healthy person’s kidneys would normally do, but one which O’Kelly’s won’t.

Later in the day, and most days for that matter, they will trade places, and Tubbs will spend three hours connected to the machine.

O’Kelly and Tubbs met at a Stone Mountain dialysis clinic, where they were both patients. They fell in love and got married.

“Everybody was like, ‘Why do you want to date somebody who has the same illness you do?’ ” O’Kelly recalls. “I said, ‘We’ll find a way to take care of each other.’”

They did —- they’re now pioneers in home kidney dialysis.

“Once people hear about it and actually start to do it, there’s a remarkable difference in how pleased they are with the home treatment as opposed to the clinical,” says Dr. Janice Lea, an associate professor of medicine at Emory University and a certified nephrologist (kidney specialist).

The home version is still not widespread —- fewer than 1 percent of dialysis patients treat themselves at home, according to the U.S. Renal Data System.

But the rate is growing rapidly, up about 35 percent in the past year, to 3,000 patients, according to nxStage, the company that makes and markets the machine that the Lithonia couple leases.

O’Kelly and Tubbs are both 42 and metro Atlanta natives who’ve lived their entire lives here. And both went into deep denial when told they had serious kidney disease.

O’Kelly had been a basketball player and still coaches for DeKalb County’s Parks and Recreation Department. A doctor told him late in 2001 that his lifelong hypertension had led to renal failure, and he would have to start dialysis.

“Once I started, I thought if this is what I got to do to live, I don’t know if I want to live,” he says. “The machine drains you, mentally and physically.”

Tubbs has polycystic kidney disease, a hereditary condition. She was 31 when a doctor told her that her kidneys, which are supposed to be about the size of a computer mouse, were more like grapefruits.

“I said leave me alone,” she recalls. “If it’s my time to go, it’s my time to go.”

She stalled and tried other treatments until her other organs started shutting down. At 38, out of options, she went on dialysis.

“I was angry and belligerent. I was mad with everybody that had a working kidney. I’d see people drinking alcohol and abusing their kidneys and I’d think, ‘How can you just take that for granted? How unfair is that?’ “

She was a regular at the clinic when O’Kelly showed up. They were part of a group of friends at first, when O’Kelly bumped it up a notch in 2005.

“He started coming over to my chair saying, ‘Hey, how ya doin’? Can we go to lunch?’ ” she says.

“I’m like, ‘No, I don’t think so.’ “

After a few months of dating, O’Kelly proposed.

He remembers it: “She bribed me. She cooked my favorite, collard greens. I said she might be a keeper. I better keep her.”

She remembers it: “It wasn’t traditional. He just basically said, ‘I’m not gonna let you get away.’ So he told me to pick a date.”

They did: June 10, 2006.

While O’Kelly relies on Tubbs to hook him up, she hooks herself up, five times a week, inserting her own needles.

“When I first got on dialysis, I could not stand the sight of needles or blood,” she says. “But you get over it. I’m very independent with it.

“You just never know,” she adds, “what situations life may deal you.”

WHAT IS DIALYSIS?

Dialysis is a way to mechanically filter the blood to remove toxins and waste that are usually removed by healthy kidneys. It’s used for patients with end-stage renal disease whose kidneys no longer process waste properly. Dialysis patients are frequently also waiting for kidney transplants.

HOME TREATMENT VS. CLINIC

Dr. Janice Lea, an Emory University nephrologist, says she steers her patients to home kidney dialysis when possible. Her diagnosis:

> Five shorter treatments a week at home frequently leave the patient feeling better than three longer treatments a week at a clinic.

> It works best for people who are younger, in general better health and who have someone else at home who can be trained to help them.

> “It’s more convenient and gives them a better quality of life.”

KIDNEY DISEASE AT A GLANCE

> More than 20 million Americans have chronic kidney disease, the precursor to end-stage renal disease.

> Nearly 500,000 Americans have end-stage renal failure. About 84,000 die of it each year.

> High-risk groups include people with diabetes, hypertension and family history of kidney disease. African-Americans are also at increased risk.

Source: National Kidney Foundation

http://www.ajc.com/services/content/printedition/2009/03/18/dialysis0318.html