Why I chose home dialysis: Wanda's Story

Wanda

Wanda did in-center hemodialysis for a year before she began training to do home dialysis in January 2004. Back then, she was apprehensive about doing her own dialysis, but now she prefers being on her own. “You couldn’t pay me to go back to the clinic,” she claims.

More time for life

Wanda and her husband Kenny very much appreciate the freedom and control that home dialysis has brought back to their lives. “Since I’ve been on home dialysis, I have more time for home life,” reports Wanda. “Dinner preparation is easier not having to plan around going to the center for such long periods of time. Socially, it is freeing in that if we would like to join friends for dinner we can. And, I enjoy having the flexibility of beginning dialysis at a time that is convenient for me.”

Wanda is so positive now because—after 16 months at home—she’s grown confident and comfortable with the home dialysis procedure. Still she remembers feeling “overwhelmed initially.” It took 7 weeks of one-on-one training and the encouragement of her nephrologist to get her over those early fears. She’s glad she took the chance, however, because she feels better than she has in years and she likes having her life back.

What is a nephrologist?

When Wanda’s doctor told her she should see a nephrologist because she had protein in her urine, she was 49 years old, in remission from her Crohn’s disease, and didn’t even know what a nephrologist was.

She quickly learned that she had a kidney problem, likely caused by hypertension, and she spent 6 years trying to preserve her failing kidneys with medication and diet. Still, she had very little energy and had to quit her job as a nanny. She also had repeated, and painful, episodes of gout.

Suddenly, her creatinine levels—which had been climbing steadily, but slowly— hit 12.5, and her doctor scheduled her first dialysis session. She had been saving her arm for a fistula access, but the sudden loss of kidney function meant that Wanda had to start dialysis using a catheter. Unfortunately, things did not go smoothly, and Wanda had to suffer through the insertion and removal of multiple catheters before she got one that would work for dialysis. She had her first treatment in the hospital using a femoral catheter in May 2003.

From in-center to home training

Eventually, Wanda settled into a 3-times-a-week dialysis schedule. “I was really lucky to have a good friend, Kathy, who helped me make it through,” says Wanda. “Kathy and I would go to dialysis together. We’d play chess, cards, watch movies, and eventually we got a lot of the other people there to smile along with us.”

Wanda made friends in her clinic and liked the nursing staff, too, but when her nephrologist suggested that she might want to try home dialysis, she quickly agreed. “I didn’t like being tied down for several hours 3 times a week. And it took up so much time for my husband and friend to take time off work and drive me to and from the clinic.”

Wanda and Kenny began training for home dialysis in January of 2004. “The training was intense,” recalls Wanda. “We went 5 days a week and at least 7 hours a day.” They ran 5 hours of dialysis and did all the set-up and disinfecting, too.

“When we finished, we got a certificate,” says Wanda. “And I think we earned it. We had to take tests and pass before they would let us go home.”

At-home schedule

Doing dialysis at home has given Wanda and Kenny the ability to make their own dialysis schedule. Now, Wanda dialyzes 5 nights a week and takes Wednesdays and Saturdays off. Each dialysis session lasts 7 hours—and starts about 10 pm.

Because Wanda has arthritis in her hands, Kenny does all the fine hand tasks, like drawing up the saline syringes to flush her catheter. Wanda sets up the machine during the day so it is ready to go at night; Kenny handles the equipment take-down the next morning. Each of them spends about 45 minutes on equipment-related tasks.

In case of emergencies, Wanda and Kenny have telephone numbers available to reach the home dialysis nurse on call. They’re also trained to handle common problems on their own. And, just to be safe, Kenny does not leave Wanda alone when the machine is running. “He wants to be sure he’s close by,” she adds.

The frequent dialysis allows Wanda to eat and drink nearly anything she wants. In spite of other medical problems, including Crohn’s, Wanda claims “people who don’t know that I’m on dialysis can hardly even tell that I’m sick.”

Wanda still uses her catheter for dialysis access. “As long as this is working, I prefer it,” explains Wanda, “I just don’t like the pain of the dialysis needles.”

On the first Tuesday of each month, Wanda goes into her dialysis clinic to have blood drawn and tested. She also draws her own blood for testing—and takes water samples—on the 2nd Sunday night of each month. So far, her lab values are looking good. “But, if something isn’t right, they call you and tell you to adjust your dialysis,” she notes.

Future plans

Although Wanda prefers home dialysis to in-center treatment, she is still hoping to have a kidney transplant. Her friend Kathy has agreed to be a donor, and she matches! Even with a matched donor, however, Wanda may not be eligible for transplantation because her antibody levels are very high. Now, Wanda and her family are trying to raise the funds to pay for antibody removal treatments. If they are successful with fundraising, Wanda hopes she will be able to go ahead with a transplant. If not, Wanda is glad she has learned how to do her own dialysis treatments. “Home dialysis has been a positive experience for me,” she says, “and I can live with it.”