Not Just Along for the Ride
Jimmie and Dawn Take Home Hemodialysis Treatment and Education on the Road
Most everyone enjoys a good love story, especially around Valentine’s Day. In 2021, Jimmie, a NxStage home hemodialysis patient and his wife/care partner, Dawn – shared the story of their “whirlwind romance” and lifelong commitment to one another. This year they’ve decided to talk about the other “love” of their lives. A deep affection for the open road.
Both Jimmie and Dawn LOVE to travel. They always have. And nothing, including end stage kidney disease and dialysis treatments, was going to stop them from pursuing that passion.
“When people have to do dialysis, I think sometimes they feel stuck,” says Dawn. “They feel like they can’t go anywhere. But with NxStage systems, you can take your machine with you. For us, traveling is about having some normalcy. You know, feeling like we can live our life on our terms.”
Dawn and Jimmie estimate they have taken their NxStage® System One™ on about 20 road trips. They enjoy visiting family, seeing the sights, and relaxing together. Recently, the couple had the opportunity to combine advocacy work (Dawn is a NxStage Patient Advocate) and pleasure with a 17-day journey throughout Missouri, Kansas, and Iowa. They drove their truck and towed a rented RV with a comfortable and spacious interior.
This was Dawn’s and Jimmie’s first ever long-distance RVing journey, and it was packed with great experiences. One day they were at a campground next to an amusement park, watching monster trucks drive by. Another afternoon they were hanging out at a Kansas City Chiefs-themed football party. While staying in Kansas City, Jimmie celebrated his birthday and got to attend a concert by one of his favorite bands.
But some of their most memorable moments came while visiting with dialysis patients, care partners, nurses, fellow advocates, and friends old and new.
“We had such an amazing time!” Dawn recalls. “We connected with so many awesome people – some we had previously only met on a computer screen (because of COVID-19). This time we got to see them face to face.”
When visiting dialysis centers, people toured the RV and were able to watch Jimmie dialyze. It was a great way to demonstrate the freedom that HHD provides, and it left an impression.
Dawn described one great experience with a woman who was soon to begin dialysis but hadn’t chosen a modality yet. She brought a note pad and wrote down everything she learned. Dawn and Jimmie learned that she was concerned about doing treatments at home, without medical staff around to help.
“We were able to demonstrate how the machine works and let her know that she wouldn’t go home until she was trained, and she and her care team were completely comfortable with her abilities,” says Jimmie. “She was so excited, she came back the next day with a self-addressed stamped envelope and asked us to write to her.”
When Jimmie and Dawn returned from their journey, they were also very excited. So much so, they decided to visit an RV dealer and shop for their own trailer. They found one that suits their unique needs, making it easy for Jimmie to dialyze while they’re away from home. It has comfy recliners, a large master bedroom and, most importantly, enough storage space for dialysis supplies.
Jimmie and Dawn say extended trips are all about preparedness, and the more they travel the more they figure out what works best. They usually bring a week’s worth of supplies but have learned it’s sometimes better to ship heavier items like bagged dialysate, to save on vehicle weight and gas. In those cases, they rely on NxStage Customer Service and their nurse to arrange for a travel prescription.
“We’ve got an amazing team. I know I can call Jimmie’s nurses any time,” says Dawn. “I tell them what we’ll need, and they send it a few days before our arrival. They know his prescription and exactly what needs to go in those boxes. They are all very excited for us to have this opportunity.”
Along the way, the couple has learned that it’s always wise to phone your destination a day or two before arrival to ensure all packages are accounted for. Dawn also packs individual bags with a day’s worth of ancillary supplies, like gauze, tape, and needles, so there’s less searching and sorting to do. Dawn says she’s ready to get back on the road as soon as possible, and can’t wait for the spring, when their new RV comes out of storage.
“Now we are seriously set up to go out on the road, whenever and for however long we want to,” says Dawn excitedly. “It’s like a dream come true. It’s kind of like the stars all aligned.”
Dawn is a NxStage Patient Advocate
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.