“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.

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.”

Published August 2019

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. Patient Advocates are compensated for their time.

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