Kidney disease hit Bill Peckham without warning. He had graduated from college in 1985 and was looking for his first job. One morning he woke up with swollen ankles. Bill went to the doctor and was diagnosed with focal segmental glomerulosclerosis (FSGS). FSGS is when clusters of tiny blood vessels in the kidneys, that filter waste from the blood, are scarred and damaged. FSGS may progress quickly to kidney failure or move more slowly.
“They tried everything they could to slow the progression,” Bill said. “But it was clear I would need a transplant in a few years.” Bill’s oldest brother was a good match and donated a kidney to him in 1988. Bill thought his problem was solved, but FSGS recurred in the transplanted kidney. Eventually the donated kidney failed. Bill had a fistula placed and started hemodialysis in 1990.
Going back to work as a carpenter helped Bill focus on his diet, exercise and treatments. “Having a physical job really helped me,” he said. “I’m on my feet all day. You have to keep moving!”
Travel also helped him maintain control in his life. Bill started traveling with a vacation trip to Chicago, which included a visit to an in-center dialysis facility. On his first trip, he felt uncomfortable with having someone unfamiliar insert his needles during treatment. A nurse from his dialysis facility at home convinced him to learn self-cannulation, the technique of inserting his own needles. This made him feel more comfortable and gave him the confidence to travel, and to set up treatments in centers where he wanted to go.
After other vacations in the U.S., he learned that his union would cover the cost of dialysis if he wanted to travel outside the country. Bill made his first international trip in 1995 to Costa Rica, followed by a two-month trip to Europe in 1996. “I was a success [at] dialyzing in-center around the world,” he said, this included a three-month trip to Europe, South Africa and Australia in 1999. “Travel helped me feel normal and gave me something to talk about.”
Bill tried different treatment modalities to see which would help him live the life he wanted. Being able to work and travel while getting treatments was important to him. In 2001, Bill, with help from his dialysis facility, changed to home hemodialysis. He began to feel better but found having treatments six days per week time-consuming. Eventually he decided to try nocturnal home hemodialysis, in an effort to reduce his treatment burden and have more time for work. “For the first time in 17 years I had evenings free,” Bill said. “I could do what I wanted, come home, and do hemo[dialysis] while I slept, then get up and go to work.” He carried his home hemodialysis machine on an eight-day raft trip through the Grand Canyon. “I dialyzed in 120 degree heat, and the machine did fine,” he said.
Bill’s volunteer work with Northwest Kidney Centers has also been an important part of his life since 1987. He was on a task force which helped establish a kidney research institute in partnership with the University of Washington, and is still active on their Kidney Council.
Being involved in your treatment is essential to living a better life with dialysis, according to Bill. “There’s a lot of luck involved, but [it’s] also doing everything you can to make the most out of your life,” he said. He advises others to take care of their fistula, avoid hospitalizations, and watch their diet. “Most people can stray from the path and nothing will happen, but for people with a chronic disease, it’s a pretty steep slope once you stray off the path,” Bill said.
Bill has been on hemodialysis for 25 years and has worked for most of that time. “I think of it as a marathon,” he said. “I’m coming to the point where I can retire with a pension. That’s amazing. I didn’t think I would be able to work when I started [dialysis].” Bill plans to continue traveling. One of his lifetime goals is to visit 50 countries. “I’ve been to 36 so far,” Bill said. “I think I can get to every continent, except maybe Antarctica.”
#TogetherWeCan is a continuing series of stories from kidney patients and care partners, sharing their experiences and insights.