Dialysis patient forms support group

Jennifer Cayson’s kidneys started failing when she was 19 years old. Now 24, she has dialysis three times a week and each treatment lasts at least 2 1/2 hours.

Dialysis is grueling but Cayson stays optimistic.

She wants to share her positive attitude with others, which is why she founded the first dialysis support group in Columbus.

The group meets the second Wednesday of each month. Tomorrow’s meeting will be held 4:30-5:30 p.m. at the Wynnton Road Burger King. Meetings are open to all dialysis patients and their families.

Cayson says people often struggle with the diagnosis of kidney failure because it seems dire. The most common response she gets when she tells someone that she’s a dialysis patient is, “Oh my God, are you gonna die?”

“They think dialysis is the end and that’s not true at all. You can live a healthy, productive life being a dialysis patient and I think because people are always thinking ‘Oh, you have no kidney, you’re going to die’ a lot of the people who come in (to the dialysis clinic), that’s all they know. So they think it’s a death sentence and it’s not.”

Laurie Stephens, the social worker at Fresenius Medical Center dialysis clinic, and Ulla Booth, a retired dietician at Fresenius, helped Cayson get the group started. They work together to schedule meeting times and places, as well as develop topics for discussion. Each meeting has an educational component that will help patients better understand their treatment.

“I see so many people struggling,” said Cayson. “Also, myself, it made me depressed, having to come here. But I always just try to stay positive and I think everything happens for a reason. And then I see people pass away and it seemed like nobody cared. New patients come in, and they don’t know what’s going on, they’re freaking out. And the staff, it’s just too much, they can’t do it all. I figured if we had a support group we could help each other out.”

And though it started small, the three women are encouraged that the growth they’ve seen so far will continue.

What is dialysis?

According to Fresenius literature, “dialysis is a way to remove waste and extra fluid from your blood when your kidneys cannot do it on their own.” Stephens said the dialysis machine is often referred to as an artificial kidney.

Patients are required to be dialyzed three days a week, anywhere from 2 ½ to 4 ½ hours each day, which often interferes with their ability to work or go to school.

“Some work, but they’re the minority,” said Stephens. “The majority of (dialysis patients) have to go on disability. A lot of people, I’ve heard them say ‘This is now my full-time job.’”

In addition to the dialysis, patients also have to watch what they eat and how much they drink because their body cannot process food and fluid properly.

For her treatments, Cayson has a catheter on her chest that cannot get wet, which means she can’t go swimming or sit in a hot tub. She also has to be careful when showering or washing her hair.

“Basic things that people take for granted,” she said about the changes in her life since starting dialysis. “Like taking trips, just leaving the state is difficult because I have to plan everything out ... I can’t miss a treatment. If you don’t keep up your treatments it’s hard to get a kidney.”

Transplantation is the only alternative to dialysis, so many patients are on kidney transplant waiting lists, including Cayson.

She is optimistic that this support group will help not only patients and their families better understand their disease and treatments, but also the community. She sees her situation as an opportunity to help others.

“As far as myself, I don’t think people should feel bad for kidney patients because everybody has a burden to carry,” she said. “And sometimes God will put you in a dark place to be a light. So for me, when I come here, it’s not like ‘feel bad for Jenny.’ No. It’s more like, what can I do to make somebody else feel better?”

This story was originally published May 10, 2011 at 12:00 AM with the headline "Dialysis patient forms support group."