Oct. 30--LIMA -- Jodi Jarvis is one that doesn't take life for granted. The Waynesfield resident keeps a sunny disposition, despite the kidney scares she's had over the past few years.
It might be because she does her dialysis treatments at home, rather than commuting to a clinic. The home treatment is gradually becoming more common, and it gives her more options and freedom.
"You have to just concentrate on what today is, and deal with it because you may not have a tomorrow," she said.
In 2009, she was diagnosed with chronic renal disease at Stage 5. Later that year, she began peritoneal dialysis treatments in the comfort of her Waynesfield home. She said it was a very scary time in her life, but decided it can't be something that completely takes over. Sitting in her living room on an autumn afternoon and talking about her treatments over the past three years, she's very jovial, often smiling and even laughing.
"It's uncomfortable, but it's not painful," said Jarvis, 45. She likened the feeling to how she would feel after eating Thanksgiving dinner. Lowering her voice, she added, "It's better than being dead."
Jarvis has been doing her treatments through Home Therapies Fresenius Medical Care in Bellefontaine over the past two years. She does peritoneal dialysis, where around 2,000 milliliters of fluid called dialysate is put into the abdomen to remove toxins, a job the kidneys are meant to do. Overnight, the dialysate is rotated in and out of her adbomen with a machine that sits beside her bed. Initially, she performed manual exchanges where the toxin-removing fluid was always in her abdomen around the clock. Because she knows the system so well now, she's able to get most of the work done as she sleeps. The machine is complex, too. If it suspects anything is wrong, it'll begin to beep and will list what's going on.
For close family members like her son Brett, who sometimes complains of everyday aches and pains, she might belt out with, "At least you don't have a tube sticking out of you!", often followed with a chuckle. The tube she's referring to is part of her treatments; it connects to her peritoneal cavity in her abdomen that flows the fluids in and out of her body. Her son is currently enrolled at Rhodes State College and majoring in nursing. Jarvis believes it's because of all the help and care he gave her during high school when her kidney problems began.
Jarvis' good attitude may at least be partially attributed to doing home dialysis verses outpatient dialysis at a clinic. There's extra work and a wealth of education involved, learning how to make sure the area is clean when setting up and the process itself. There are also monthly doctor checkups, but the whole process is worth it for her.
"The nice thing about home dialysis is there's growing evidence that patients who do dialysis at home also tend to have increased longevity and reduced hospitalizations," said Jill Eldridge, a Registered Nurse with Fresenius Medical Care who is Jarvis' nurse. "They feel more empowered to have those lifestyle choices that help them do well. It's a chance to help them regain control of their life."
Jarvis is currently on the waiting to receive a kidney transplant, hoping to have a transplant within the next year. But for now, she's able to do her treatments in the evenings and overnight, which frees up her day to do what she pleases. Usually it's watching soaps, reading, camping, gardening, everyday activities, but it's something that she enjoys all the more now. She's able to travel and get her treatments done. She hopes to urge others that being on dialysis isn't a death sentence.
"I wanted to know about, read about, learn about someone who was in my position, how are they getting through it? How are they coping?" she said.
According to the Cleveland Clinic, there are about 350,000 people who use dialysis nationwide. In Ohio, about 15,000 use dialysis to treat advanced kidney diseases. For earlier stages, treatments include various medications and a change in diet and lifestyle. Dialysis began as a common form of treatment for those in kidney failure in the 1960s, according to the National Kidney Foundation. Even nowadays, less than 10 percent of people on dialysis do home peritoneal dialysis, and only 1 percent do home hemodialysis.
Diabetes and high blood pressure are leading causes of kidney disease. Jarvis said she had high blood pressure since her mid 20s, but the cause of her kidney disease was unknown. The onset of learning about her kidney problems was sudden, with no family background of the disease. According to NKF, more than 26 million Americans have kidney disease. Millions more are at increased risk for getting it, and like Jarvis, most don't know it.
She hadn't been screened in two years, and received her advanced diagnosis. She urges family members and friends to get checked and get blood work done on an annual basis so they don't suffer the same fate.
About 20 miles down the road, in Lima, 11-year-old Carrie Jones along with the assistance of her adoptive mother Mary Cook go through home dialysis too, with the St. Rita's Health Partners Kidney Services. Jones has Bardet-Biedl syndrome, a congenital disease that severely affects her kidney function. It's an illness that has affected her most of her young life.
Despite this, she also seemed to have a happy demeanor. She sat in front of the television watching one of her favorite shows, Spongebob Squarepants. She also adores her chihuahua-poodle mix, Tiny. What makes her joy more spectacular is that she's unable to walk and she is beginning to lose her sight, which are other consequences of the syndrome she was born with.
"She is the sweetest little thing," said Mary Cook, 53. "My husband said she's a carbon copy of me."
However, her treatments weren't always as convenient. Unlike Jarvis, Jones has been doing hemodialysis, which instead filters her blood through an artificial kidney and rotates her blood back into her body. No more than a half pint of blood is filtered at a time. She needs to do hemodialysis rather than peritoneal because she has too much scar tissue in her abdominal cavity and around her kidneys.
Her parents Mary and Chandler Cook are visibly dedicated to their youngest child, their only daughter. Cook also has two biological sons, two adopted sons as well as her husband's two sons. After the kidney Carrie was donated in 2004 gave out in 2010, Mary Cook and her daughter began commuting to Nationwide Children's Hospital in Columbus three times a week for her hemodialysis treatments. Most kidney clinics aren't accommodating to children, and the state capital was one of the closest options.
The Columbus-based treatments were beginning to take over their lives, three full days, between the two-hour commute each way and three-hour treatment, were gone. Cook easily spent $120 each week just in gas money. They made this commute three days a week for a year and a half. After awhile, Cook began researching for closer options and talked to Dr. David Imler at Kidney Services, and was relieved when he said they could accommodate. He was the first person that said home hemodialysis was an option. Carrie has been doing hemodialysis at home for almost a year now, thanks to Kidney Services in Lima. Carrie is their youngest patient ever. Like Jarvis' machine, it'll beep if anything is wrong or out of place, citing different areas and things to check before continuing on.
"Being able to do this at home has made her healthier," said Dr. Imler. "She's functioning at a much higher level now... It's like watching a beautiful flower bloom."
"I'm so glad that Dr. Imler let us do this," she said. "It's so convenient here. I love it."
Of course, like Jarvis, Cook attended weeks of classes to learn the process and assist Carrie. Cook's sister also was trained to do the treatments. Jones has monthly doctor checkups and blood tests to ensure she's doing well. Best of all, the home hemodialysis is portable. Cook is exciting to visit her son in Kansas around the Thanksgiving holidays this year, and she won't have to worry too much about Carrie's treatments, since she can take everything with her. The fluids and everything else she needs can be delivered to her son's home.
"I want people to know there's options out there," Cook said. "You just have to be dedicated to the cause."
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