We’re making final preparations to pick up the new RV on February 13th. It’s exciting to finally reach this stage after what feels like a very long time sitting still and waiting while all the medical appointments run their course.

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Medical Update

Liver

• I’m still getting an MRI every 3-4 months to make sure the little blood clot (deep in the liver tissue, probably caused by the July biopsy) fully dissolves. The next one is in March at Mayo Phoenix. It would be nice if it would go away fully and I could stop taking the blood thinner and getting frequent imaging.
• I’m getting bloodwork done in Phoenix as well to get a sense for whether a bile-thinning medication is starting to work lowering the liver enzymes in my blood. The medication doesn’t slow down the disease, but responding to this treatment and getting the enzymes down to within 1.5x normal would be a big win. Usually it takes ~12 months and this will be 3.5 months, so it’s an early read.
• I’m also getting a couple tests for the first time (MR Elastogram and Enhanced Liver Fibrosis) at Mayo Phoenix that will help me make decisions about how aggressive I want to be with regard to enrolling in clinical drug trials. Trial enrollment would be a big decision, as it would impact our travel. But even as good as I feel, the hour may be later than we think and these two tests should help paint a clearer picture.
• After the March appointments and a tele-health follow up with my Mayo Jacksonville hepatologist, I’ll get into the ongoing routine of having blood tests from the road at regular intervals. And unless something changes in that bloodwork or symptoms, I’ll fly back to Jacksonville once (or twice) each year for more in-depth annual tests & imaging.

Crohn’s Disease

• Despite the Mayo GI team being very clear with me that I didn’t have Crohn’s in December, they’re now calling it Crohn’s because there isn’t much else that explains what is clinically evident. And something like 80% of PSC patients have IBD, so best to just “call it” and move on. (It still isn’t listed in my chart though.)
• The pace has continued to be frustratingly slow, but I am very happy with my doctor and nurse practitioner regardless.
• Because I had a past occurrence of uveitis (eye inflammation related to IBD), we needed to have the ophthalmologist clear me for the Crohn’s drug that GI wanted to use. Which he did. He also treated me right on the spot for cloudiness I was experiencing from my lens implants and I am thrilled to be seeing noticeably better.
• This week I’m meeting with a Mayo clinical pharmacist about Tremfya, the drug of choice, and I had thought the insurance authorization would start after that appointment. So I was surprised to get a call on Friday that the drug was approved and that I had been assigned to CVS Specialty Pharmacy for shipping the very expensive injection pens that require refrigeration.
• When I called the specialty pharmacy group on Friday, they didn’t have my account or file yet, so hopefully on Monday (tomorrow) things can get moving. I hope I can get my first self-injection dose in hand yet this week so I can administer it at the Mayo campus with nurse supervision. Fingers crossed that those stars align. A small percentage of patients have a severe reaction to it, so I’d really rather do the first one in a clinical setting.
• After starting the drug, I will need 6-week, 3-month, and 6-month bloodwork as well as a 6-month colonoscopy. I am hoping that flying back to Jacksonville for this 6-month procedure will enable me to set an “anchor” month for several…if not all…of my annual in-person needs.

So we’re very close to the finish line where I’m done with analysis/diagnosis and moving into treatment/maintenance. There will be ongoing medical management (i.e. getting the monthly Tremfya dose while traveling, regular bloodwork) but those will likely be my new normal for years & years.

Travel Plans

Travel Planning Software

The Route

• Subsequent to the state park we’ll be off to the races, hopefully camping and traveling in much the way we hope to do for the coming year.
• The tentative route takes us to several stops, including:
  • Petrified Forest National Park
  • Saguaro National Park
  • Tonto National Forest (our Phoenix spot while I have my Mayo appointments)
  • Painted Rock Petroglyphs
  • Quartzsite BLM
  • Lake Havasu
  • Sedona
  • Grand Canyon National Park
  • Santa Fe
• Then we’ll make our way back to the Midwest for some niece/nephew graduations, followed by family visits at the farm where we spent several weeks back in August 2025.
• After swinging through IN, IL, WI & MN for family & friend visits…probably during June…the next goal destination is Glacier National Park. We haven’t planned things beyond May very solidly yet, which is kind of exciting because our prior RV everything had to be very “locked in” well in advance.

Travel Style

Which brings me to the topic of our more loose, spontaneous travel outlook. Certainly for the first few months of our plan it may seem like we have the route entirely set, but in actuality there’s a high degree of flexibility. Very few of the stays are actual reservations, which is an odd feeling. Both free and slightly scary. Time will tell how it works out.

Our new RV is estimated to be about 1/3rd the size of the former one in terms of storage, so we’ve both been through our belongings several times. We make cuts, then we set it aside. Then we make cuts again. I hope it all fits, but we won’t really know until we’re in Denver.

While we’ve been fastidious about cutting belongings, we’ve also had to add some things, such as:

• A smaller 3-stage water filter (we had a much bigger one before)
• Exercise weight bands (we used actual hand weights before)
• Smaller, lighter dishes
• A new cold-brew coffee setup
• A new spice storage system (our old setup was glass and too big)
• Seat-back accessories like a laundry bag and organizational panel to make use of space in the cab
• Dry bags to keep items in the RV’s lower, outdoor storage bins
• Sturdy, decorative pillow shams because when our Murphy bed folds up during the day, our bed pillows will become couch pillows
• Backup refrigeration for my Crohn’s medication, just in case as well as a sharps container

…truly that’s just the tip of the iceberg, but it’s a good sampling. We’ve tried to think through how we’ll live in the smaller space, but I’m sure we’ll find extra optimizations to make while we’re visiting family in May.

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For now, I think we’re about as ready as we can be. My theme for 2026: Onward!