Dawn and Jimmie share several common interests, from live music, to motorcycles, to camping. But two things they are particularly passionate about are travelling and teaching people about the benefits of more frequent home hemodialysis (HHD).
“Go big and not go home…”
Earlier this year, we chronicled the couple’s 2021 RVing trip, which convinced them to “go big and not go home.” They bought a 31 foot RV and got back on the road, visiting memorable places and people across the US over a 3-month span. They’ve seen some of their best friends, rocked out to some favorite bands, watched the sun set on a New Hampshire lake, and shown hundreds of people that having end stage kidney disease (ESKD) doesn’t mean you’re stuck in one place. We caught up with the pair toward the end of their excursion to ask a few questions:
An exciting new Medicare policy1 is one reason you could be away from home for so long. Could you explain?
Of course! One of the few benefits that came from the COVID-19 pandemic was that many doctors’ offices started using telehealth more, and now Medicare allows for two consecutive monthly telehealth visits. Jimmie’s doctor is embracing the policy so Jimmie only needs to go see them in person once every three months! That’s how we were able to be on the road for so long, and we came home in time for the third visit. The policy is giving way more freedom and flexibility to home dialysis patients*.
Besides the length, what was different about this trip compared to the last journey?
The biggest change is the new RV. It’s exactly what we’ve always wanted. It has a giant private bath with a huge shower, a private bedroom, and the dinette folds into another bed. We also have a full kitchen with oven, microwave, refrigerator, and freezer. It has everything we need to be comfortable and for Jimmie to do his HHD treatments.
“We’ve done treatments in so many places. Friends’ houses, campgrounds, truck stops, parking lots. The NxStage system is so transportable, it gives us the freedom to do dialysis when we want, where we want.”
Is it difficult to do dialysis in an RV, or while traveling?
Actually, it’s very easy for us. We can take the machine out of the travel box and get it set up in about 10 minutes. After that, it’s just like being at home. We’ve done treatments in so many places. Friends’ houses, campgrounds, truck stops, parking lots. The NxStage system is so transportable, it gives us the freedom to do dialysis when we want, where we want.
How do you make sure Jimmie can comfortably dialyze when and where he needs to?
In the RV there are two big recliners side by side and the machine is right next to him, just like at home. It’s extremely comfortable! We can sit and watch TV while he does his treatments, and visitors can see him from the door. We also made sure our RV has plenty of room to store two weeks of dialysis supplies, including several dozen boxes of bagged dialysate. Lastly, we bought a generator that can run on gas or propane. That way, if we don’t have access to electricity, we can use the generator to power his machine.
How did you manage getting supply shipments while traveling?
We arranged it with our Nurse and NxStage Customer Service ahead of time. We told them we needed seven travel orders and gave them the dates and the addresses. It was easy. If we needed to change any of the details, we just called NxStage and it was handled.
How many states have you visited?
We’ve been to 23 states throughout the Midwest, the South, and the Northeast. It’s been incredible.
That’s a lot of ground to cover. Have you done anything to help keep track of all your destinations?
Yes, the End Stage Renal Disease (ESRD) Network gifted us a map of the US which is velcroed up at the front of the RV. We mark every place we’ve been on our journey. We also get a sticker from every state and stick them to the travel case we use for the dialysis machine.
What was your favorite destination?
Ohio was fantastic. We were able to spend two weeks there in June, during bike week. We got to see Lita Ford, Jackal, and Slaughter in concert, and visited the Rock n’ Roll Hall of Fame in Cleveland. One of the highlights was the Northern Ohio National Kidney Foundation (NKF) Walk. It was very surreal to see 400 people walking for the same cause. I get choked up thinking about it.
“We’ve been to 23 states throughout the Midwest, the South, and the Northeast. It’s been incredible.”
Any other memorable moments?
Yes, we got to visit with many close friends and people in the kidney community. In Missouri, we met up with our Men on Dialysis Support Group and Dawn connected with almost everyone from her Care Partner Support Group. We also tried some interesting food along the way. There’s a place called Hillbilly Hotdogs in West Virginia. The hotdogs are amazing and you eat inside an old school bus, and right next to it there’s a car stuck up in a tree. They embrace their hillbilly there.
How many dialysis centers did you visit?
At least 20. It’s been amazing talking to people about kidney health and HHD. They are always so blown away when they walk into the trailer and see Jimmie on the machine. At one event, there was a young man who wanted to know all about kidney disease because his friend had just been diagnosed, it was very touching. And every time we leave a clinic, I get three or four new Facebook friend requests. Our community continues to grow.
How important is it for the two of you, and others on dialysis who want to travel, to be able to?
For those who want to, it’s extremely important to have that option. One reason many people go home is they don’t want to be stuck to a center’s schedule. And we don’t want to be stuck home either! But if you’re in-center and you want to travel, you have to find clinics along the way who can accommodate you and then schedule your vacation days around treatments. For us, wherever we go, we’re “home”.
Not all patients may experience these benefits
*Check with your doctor to understand current policies.
Dawn is a NxStage Patient Advocate
1. Blanket Waivers of Section 1877(g) of the Social Security Act Due to Declaration of COVID-19 Outbreak in the United States as a National Emergency. https://www.cms.gov/files/document/covid-19-blanket-waivers-section-1877g.pdf. Accessed August 2022.
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.