When Bernie and Brenda Alvey decide to take an “extended vacation,” they add new meaning to the phrase in several ways.
First is their mode of transport, a spacious Palomino Puma trailer that extends 33 feet behind their Ford F250 pickup – and makes for a real comfy place to spend their days and nights.
Second is the extended time they spend away from home – sometimes weeks cruising around the heartland of the United States and beyond.
And third, but certainly not least, is the way they extend themselves to educate and inspire others about the many benefits of more frequent home hemodialysis (HHD), including the ability to travel.
Regardless of reasons or destinations, all these elements add up to a relaxing, enjoyable way for the Kentucky-based couple to spend retirement together. “We just like to travel and see different parts of the country,” says Brenda of their love for RVing and the open road. “We’re seeing a lot more than we probably would if we didn’t travel this way.”
Bad news, big decisions
If you didn’t know better, you’d think there was nothing unusual about their story. Just a couple of fun-loving folks living the dream. But there was a time when the prospect of leisurely excursions looked bleak. In 2011, Brenda was diagnosed with Membranoproliferative Glomerulonephritis (MPGN), an autoimmune disease that destroys kidney function and eventually forced her to start dialysis in 2015.
Assuming Brenda’s dialysis therapy and schedule would force them to give up their favorite pastime, they planned a big “final” excursion to Arizona to see the Grand Canyon. It was a month-long adventure that the pair counts as their favorite. “Just the awe of it,” recalls Bernie. “If you ever go to the Grand Canyon and tell me there’s not a God – well, you’d have a hard time convincing me. It’s just like a painting come alive.”
Happily, that trip was far from their last.
“I never went in-center,” recounts Brenda. “When I was first diagnosed, they (the Home Dialysis team at Fresenius Kidney Care in Louisville, KY) had a Treatment Options (TOPs) class and they showed different dialysis treatment options on video. We went to a center and decided that was too depressing.”
Bernie and Brenda chose to get trained on HHD with a NxStage system, and they’ve never looked in the rearview mirror. “I feel normal,” says Brenda. “I mean (dialysis) doesn’t affect me at all.” She dialyzes several times a week for about 2 ½ hours at a time, and other than a phosphorous binder and a good multivitamin, doesn’t use any other supplement or medication. Brenda also works out at the gym on a regular basis.
“Making” the best of things
Once they knew Brenda could do dialysis at home, the next step was making sure they could bring her NxStage system in their home away from home. It turned out they could! Fast-forward to their latest purchase (the Puma model) and they had some creature comforts in mind. They asked the dealer to install two roomy recliners and an extra electrical outlet for dialysis, then added a 40-inch smart TV and a homemade stand (crafted by their son) to support the NxStage cycler. Together, these little luxuries create an ideal space for Brenda to do her therapy.
With a little ingenuity and a lot of gas, the couple has put miles of smiles behind them, with many more to come. They most enjoy National Parks and usually visit weekdays to avoid crowds. Bernie says using the America the Beautiful Senior Pass and/or Disability Access pass – both available through the National Park Service – is a great way to cut costs.
Attractions and activities over the last few years have included the Hoover Dam, the St. Louis Arch, family reunions, windmill farms in Oklahoma, country music shows in Branson, MO, their daughter’s wedding in Kentucky, and Prayer Mountain in the Ozarks, among others. “It’s great to see all the beautiful sights in the USA,” says Bernie.
Adventures in advocacy
In 2018, Bernie and Brenda decided to turn their passion for travel and knowledge of HHD into an opportunity to help others. Bernie had served as a volunteer emergency responder for 37 years, so it was no stretch for him to take on the role as a NxStage Patient Advocate.
“When we went to the center for our appointments (monthly check-ups), every time they had new patients come in and they’d ask us to talk to them,” recounts Bernie. A frequent user of Dialysis Families by NxStage within the helparound app, he kept reading about Patient Advocates and contacted the company.
Now they hit the highway with a new sense of purpose, visiting dialysis centers for “Lobby Days,” where they tell their story and share their successes, both in terms of staying healthy and roadworthy. The work came along rather naturally, since people are always asking them about both.
“We’ve talked to people that have campers and when they see that we can do it with ours they decide that’s what they want to do,” says Bernie, who also noted that the more frequent therapy intervals and shorter therapy sessions are a major reason why Brenda and other HHD patients are able to stay active.
Bernie’s advice for anyone traveling on dialysis is “Make a list and check it twice!” He has an inventory list for supplies and how much is needed per day, and he always makes sure they have enough on hand.
Beyond travel tips, Bernie and Brenda say the most satisfying part of their role as advocates is helping to influence patients to try HHD.
“When they tell us about the ones that have started home hemodialysis that’s the biggest reward,” says Brenda. “When you’re doing home dialysis you’re not letting dialysis control your life, you’re controlling the dialysis.”