Dreams of the Past Are the Story of Jim’s Future
On the Road Again
When Jim was a child, at least twice a year his family borrowed a Coleman pop-up camper from a generous uncle and loaded up for adventure. With a car full of groceries, sleeping bags, and other essentials, they would drive long hours and thousands of miles to destinations around North America – Yellowstone National Park, New England, the Canadian Maritimes, and south Florida among them.
“Looking back, that’s where I got my love of camping and travel,” Jim recalls. “And when I had kids of my own, I wanted to pass that love and those experiences on to them.”
For many years, Jim did as his dad had done before him, hitching a camper to his truck every summer, and showing some of his favorite places to his wife and their three children. As the years passed and the kids grew, Jim Looked ahead to retirement. He had a dream – more road trips and, with any luck, an upgrade to a Volkswagen camper van.
But life had other plans, and Jim’s dreams ended up in the breakdown lane – at least for a time.
“When I was about 40, I went for a physical and my blood pressure was elevated,” Jim explains. “My doctor decided to do some blood work and when it came back, they said my creatinine level was up and that I should see a nephrologist. Those two words were brand new to me, and I had no idea what they meant.”
As it turned out, it meant Jim had something called IgA nephropathy, also known as Berger’s disease. The disease results from a buildup of immunoglobulin A (IgA) in the kidneys, which causes inflammation that can hinder kidney function.
Within 6 years, Jim’s kidneys had failed. He started on peritoneal dialysis (PD), but about 6 months later a living donor (his sister in-law) came forward, and Jim received a new kidney, which lasted 10 years before IgA nephropathy again took its toll. This time PD wasn’t an option because of a medical condition, so Jim had to begin in-center hemodialysis (ICHD).
“At first, I was devastated”, Jim remembers. “I was so in despair thinking of a life hooked up to a machine. I thought ‘What kind of a life is that?’”
Jim says he was “absorbed in self-pity,” but tried to think about the benefits of dialysis and the fact that it was, after all, sustaining him – keeping him alive and in relatively good health.
““I realized dialysis is simply a medical procedure,” Jim decided. “It was up to me to make it a curse or a blessing. I decided to make it a blessing.”
To stay on top of his health, Jim joined a YMCA and began using the pool. He took swimming lessons and worked on increasing his endurance. Several years later, after lots of practice, he achieved something he never thought possible – he swam a complete mile (72 laps) without a break. Jim says the accomplishment gave him confidence that, even in his 60s, he could try and succeed at new things.
Not long after his swimming triumph, a nurse visited Jim’s dialysis center to talk with patients about NxStage Home Hemodialysis (HHD) machines. Jim was excited by the idea of doing dialysis at home again (as with PD) and intrigued to learn that the system was portable and durable enough for travel. He decided to try another “new thing” and trained to do more frequent HHD at home. He also started working on a plan to make his travel dreams a reality.
“I had traveled some while in center but having to schedule dialysis treatments at nearby centers took away a lot of the fun and spontaneity of travel,” he recalls. “After doing home hemodialysis for a few months, I had an idea. I started thinking about a van conversion that would enable me to do dialysis anywhere I roamed.”
During his dialysis treatments, Jim started watching videos on turning vans into self-contained camping vehicles. In 2020, he bought a gently used Dodge Ram ProMaster. Once COVID-19 had the world on lock-down, Jim had very little else to do but work on his project. He’d spend 2 to 3 hours a day building cabinets, running wires, installing plumbing, and more. Whatever his background as an electronic technician didn’t cover, he learned online, and slowly but surely, he made it happen.
Twenty-two months later, Jim completed what is now called “The Dialyvan,” a name his niece came up with after she saw the finished product. The Dialyvan is equipped with:
- A swiveling driver’s seat that doubles as a dialysis chair
- An elevated bed with space underneath for up to 3 weeks of pre-mixed bagged dialysate, cartridges, and more
- Cabinets and drawers for gauze, tape, and other supplies
- A sink with running hot water
- Enough battery power to last 24 hours “off the grid” (without access to electric power)
- Custom curtains, which Jim made himself after learning to sew!
So far, the Dialyvan has taken Jim to 25 different states, where he has hiked past mountain streams, waded through crashing waves, and done dialysis from the comfort of his own vehicle. On a trip with his daughter, he even got to dive with sharks (in a cage) at the Georgia Aquarium.
“It was fantastic,” says Jim. “And I wouldn’t have experienced that before switching to HHD. But here I am 65 years old, I’m on dialysis, and I’m diving with the sharks!”
Jim credits his family and his care team with giving him the encouragement and training to do what he does. His nurses, doctors, and his wife Becky (whose health prevents her from traveling) all love hearing about his adventures and seeing his photos when he returns from his journeys. And beyond the people in his life, Jim says there’s one rule he has lived by that has kept him motivated … never give up.
“I thought my life was over and now I’m traveling all over the country,” he says with a smile. “From dialysis, to swimming, to finishing the van, I’ve learned that you can’t give up just because you’re not an expert right away. Small steps, day after day, adds up to success. You just have to stick with things.”
When asked whether his experience could be an inspiration for others on dialysis, Jim is optimistic, but also realistic and humble.
“It’s not so much that people should be emulating me,” he says. “The point I’d like to make is to try and search inside yourself and find what is it you want to do – painting, gardening, traveling, or whatever. Find what excites you, and you can still go after it!”
*Since this story was written, Jim has received a kidney transplant.
Home hemodialysis with NxStage systems involves risks, and you may not experience the potential benefits of such therapy. NxStage systems require a prescription for use. If your doctor prescribes more frequent therapy, your vascular access is exposed to more frequent use which may lead to access related complications, including infection of the site.
