A Whole New World: Ivan, a NxStage user and HHD Patient, Shares Trials, Travels, and His First Trip to Disney
When it comes to a love for travel, Ivan never really had a choice in the matter. It was instilled in him at a very early age, and it’s a feeling that has remained ever since.
“It’s just in my blood,” Ivan says. “When I was growing up, my dad traveled a lot. He was an airline pilot and also worked as a trucker, and he’d take me with him from time to time. I always wondered what was beyond the next hill. I just wasn’t satisfied staying put.”
“I always wondered what was beyond the next hill. I just wasn’t satisfied staying put.”
Another part of Ivan’s life that (literally) gave him “no choice in the matter” was his health. As a 6-year-old, he was diagnosed with Henoch-Schonlein purpura (HSP), an autoimmune disorder that attacks the cells and organs. HSP severely damaged Ivan’s kidneys, and a few years later he had to start dialysis. Doctors started him on peritoneal dialysis, but it wasn’t a good fit for him, so he went in-center.
Ivan, now 47, says it was a scary time but getting to skip classes for therapy and listening to Beastie Boys songs on the rides to and from the center helped make it less stressful. At 12 he received a kidney transplant, which lasted 10 years, but he was forced to return to in-center dialysis when he was 22.
“Dialysis wasn’t scary to me anymore because I was an adult and I knew the process,” Ivan recalls. “I even knew some of the staff at the clinic from when I was younger. The difficult part was knowing what the future held – three days a week of therapy, a limited diet, maybe another transplant if I was lucky. As a kid I didn’t realize the full implications of everything. As an adult you know better.”
For the next 16 years, Ivan stuck to his treatment schedule, going back and forth to the center three times weekly and following a kidney friendly diet. There was no second kidney transplant, but in 2014 he learned about an alternative way to do dialysis… at home. Tired of the commuting and scheduling difficulties associated with in-center therapy, Ivan wanted to try it. He spoke with his care team and got scheduled for training. He was thoroughly trained on a NxStage system, and swiftly made the transition to home hemodialysis (HHD). He has never looked back.
“I’m able to schedule things on my time. When I was in-center I had to get up by 4 a.m. to be there at 6 a.m. By the time I finished my treatment and got home it’d be midday and I’d need a nap. I was always so worn out, and half my week was just gone.”
A lot has changed since Ivan started more frequent HHD. He can enjoy a more liberal diet, and his treatments don’t tire him out as much. But the biggest difference, says Ivan, is the freedom.
“I’m able to schedule things on my time,” Ivan explains. “When I was in-center I had to get up by 4 a.m. to be there at 6 a.m. By the time I finished my treatment and got home it’d be midday and I’d need a nap. I was always so worn out, and half my week was just gone.”
On HHD, Ivan does treatments five days a week, and prefers to dialyze in the evenings so he can wind down while watching a Netflix movie or gaming and then get ready for bed. The only time he alters that schedule is while – you guessed it – traveling.
Driving is Ivan’s preferred mode of transportation, and from his home in Bristol, Tennessee he and his wife Joyce are “about 12 hours from everywhere.” That means they can get in the car and in half a day arrive in New York, Chicago, or their favorite vacation spot, Florida.
Traveling as an in-center patient was complicated, recalls Ivan. It required coordinating with a clinic away from home, lots of paperwork, missing chunks of his vacation days for therapy, and being tired. But with HHD, he works directly with his care team and NxStage to get supplies shipped to his destination. Once there, he can choose when to do his prescribed treatments when it works best for him and Joyce.
Even with all his travels throughout the years, until 2021 Ivan had never visited Disney World.
“I was never really that interested in going,” says Ivan. I thought it was for kids, and it’s pretty expensive.” But the self-described “huge Star Wars fan” changed his mind really fast as soon as Disney opened a new park in 2019. “Once Galaxy’s Edge was open, I thought ‘Well now I have to go!’” he says.
The original idea was to travel to Orlando in 2020, however when COVID-19 hit, those plans got canceled. But Ivan and Joyce have more than made up for it, visiting Disney three times in less than two years – most recently in November 2022.
As for rides, Ivan says his favorites are Rise of the Resistance and Star Tours, a 3D space-flight simulation ride that includes different story lines, characters, and settings from the Star Wars movies and TV shows. “The line is usually short, and you never quite know what you’re going to get,” he says.
Beyond the sci-fi attractions, Ivan says he and Joyce love to walk around Epcot Center, visiting all the different “countries” and trying different foods. Because he has fewer dietary restrictions on more frequent HHD, Ivan can be a little more adventurous with his choices.
One reason they’ve been able to travel so much, says Ivan, is the NxStage machine. He says it fits easily into his SUV and is plenty rugged enough for long drives. If the couple decides to spend the night at a hotel along the way, setup is simple and straightforward. “I can break down and put it back together in a matter of minutes,” he says. “There’s really not much to it.”
At Disney, once in the hotel, Ivan set up his cycler near the bed and kept to his evening therapy schedule all but one day, on which he dialyzed during the day so the couple could enjoy nighttime festivities. Ivan said he was especially grateful for HHD on the Saturday of the vacation, which when he was in-center used to be the second day of his 2-day gap.
“It used to be anything happening on Saturday was just out of bounds for me,” Ivan remembers. “I just would not have the energy. Now, here I am all these years later and my friends don’t have the energy to hang out – and now I do!”
Not all patients may experience these benefits