We’ve been dealing with surprising, unwelcome medical news which has taken us off the road for a bit. Prior to the diagnosis we had been toying with the idea of changing our travel setup…but the new situation has accelerated those plans. And although I’m still reeling from the diagnosis, I’m very much looking forward to our new adventures.
Medical News
I’ve been diagnosed with PSC, Primary Sclerosing Cholangitis, which is a chronic liver disease marked by inflammation and strictures in the bile ducts. The inflammation progresses to fibrosis/scarring, then to cirrhosis and parts of the liver stop functioning. It isn’t a classic auto-immune disease, but there are some auto-immune markers. And like a lot of auto-immune conditions, there is no cure. Unfortunately there is no treatment for this one either. Nothing slows the disease progression, although once I’m feeling sick there are some medications to treat symptoms, but they don’t always work well. The disease comes with elevated risks for a few nasty kinds of cancer as well.
Based on averages, I should have another 5 to 7 years with few symptoms. Then 2 to 4 years where I’m sick. And a final 1-2 years where I’m so sick that I get put on a transplant list and hope there’s a match in time. Transplant usually grants another 10+ years. At the start of 2025 I would have said I was one of the healthiest people I know, taking no medication and having no medical issues. Now I’m looking at 5-7 more “good” years if I follow the average and it has been hard to process, to say the least.
PSC is classified as a “rare” disease and it impacts around 1 in 10,000 in the US. Most of the people diagnosed also have IBD, particularly ulcerative colitis. Most are male. And most are diagnosed between the ages of 30 to 40. As far as I’m aware right now I don’t have IBD, so overall it is a pretty long shot that I’ve ended up with this condition.
I’m entirely asymptomatic…in fact except for the mental toll, I feel amazing. It was found through routine annual bloodwork that showed elevated liver enzymes. After a re-test (because I was in classic denial), I was referred to specialists at Mayo Clinic Jacksonville, and although it took a couple months to get that initial appointment, they made short work of the diagnosis thereafter via bloodwork, a biopsy, and a special type of MRI. The disease has been confirmed from multiple angles by specialists who are some of the best in the world at liver care.
There are reasons to be hopeful:
- Progression for each individual is highly variable. It is possible I could have PSC for 15+ years with very slow progression and few symptoms. If I remain free of IBD, I have better odds of a longer timeline.
- There is a drug in development that had promising results in a phase 2 Spring24 study. It is the first drug to show improvement in all key disease markers, including reductions in fibrosis/scarring. FDA has fast-tracked it and later this year they’re expected to start recruiting on a phase 3 trial. Assuming it all goes well, this would be the final phase and the drug could be on the market in 4-5 years. I’m keeping a close eye on it, but am on the fence about whether I’d want to try to get into the phase 3 trial.
- I’m being treated at Mayo Clinic, which is a wonderful place to be if you have a sick liver. I’m very thankful.
It has been difficult to work through this news. I’m still in the midst of the mental strain. But I am doing better and feeling more hopeful, thanks in large part to the support of family and friends. We got off the road, canceling reservations and re-routing our RV to the farm of my brother-in-law and his wife. They’re loving, generous, welcoming people and the time there was the break that we needed. We’re forever in their debt. Talking things through with both of my smart, loving parents and getting the medical perspective of my father, a former cardiologist, has been invaluable. My sisters have provided needed emotional support in some of my harder moments. Our kids are confident that good news regarding treatment is just around the corner – their positive thinking is contagious. My other brother-in-law was ready to fly down to Jacksonville with me for some of my testing, which blew my mind he’d go to those lengths. And friends have surrounded me with love. All of this help is also a reason for hope because I know people will be there if I need them.
And apart from the others, in a category all his own is my husband who is weathering the highs and lows with me. A few weeks after diagnosis I told him that I was falling in love with him all over again. He’s been amazing and I couldn’t do any of this without him.
Moving forward, I have a slew of appointments between now and the end of the year. Thus after our break at the farm, we are in Florida for that duration. There’s a resolvable complication revealed by the MRI that is being addressed and we’ll see if there’s evidence of IBD. But after these initial items are more or less dealt with, surveillence will move into a regular rythym. I will have a set of labs drawn every 3 months with a more extensive work up and MRI annually. I believe the quarterly labs can be done from the road, but the annual items will be at Mayo. In January we’ll move forward with a “new normal” situation, continuing our travels.
The New RV: Rossmönster HAVN
Captain Obvious: the current fifth wheel is large, even though it isn’t huge for a fifth wheel. And while it is comfortable to live in, the size has significantly restricted the types of places we can take it. I had been starting to create our 2026 travel plans and I didn’t see a way to get us up into the mountain campground gems of Colorado, which made both of us sad. We started talking about renting another type of RV in Denver, just to see how it felt. And based on that rental idea, the concept of changing our approach grew in both of our minds to the point that when Rossmönster introduced the HAVN, we were both enthralled. But the plan was still to rent something for an extended Colorado trip and see what we thought.
Then came the diagnosis and we felt more urgency to make the most of the time we have.
Shortly after we arrived at the farm for a rest from traveling, we hopped on a plane to attend Overland Expo and visit with Rossmönster at their new facility. (Not really a “rest,” but it was a huge relief to be able to leave our dogs at the farm. Again, we’re so grateful for the help.) We loved what we saw and got answers to our long list of questions. Shortly thereafter we put down a deposit. Our unit should be ready in the first half of January.
Surely you can Google it as easily as I can, but here are some links:
We have downsized yet again, based on rough estimates that a third of our stuff will fit into the new setup. While there have been some difficult decisions, most of it has been pretty easy based on whether we’ve used any particular item much in the past year of travel.
The plan moving forward:
- We loaded most of what’s left of our belongings into the bed of the truck and drove it to Jacksonville, where we’ll be for the next 4 months or so.
- Come January, we’ll drive to Denver and move into the HAVN, hustling southward to warmer weather.
- We’ll have a few months as a “shakedown” trip, then make our way back north to the farm.
- We’ll stop at the farm for several weeks and work on all the storage customizations that’ll be required to make the new space a viable long-term option. We’ve also left a few bins of belongings at the farm that didn’t make the immediate cut but might still end up being brought onboard the HAVN once we have our storage sorted.
- During the shakedown we’ll be evaluating whether we need a separate, towable vehicle, such as a Bronco.
After the farm, I’d like to slowly make our way to Glacier National Park. But we’ll be in a position to approach our travel plans in a much more flexible way because we’ll be able to get into so many more campsites, including dispersed camping. And I have always wanted to be more off the beaten path than we’ve been able to be so far. It’s very exciting.
If I was destined to get a whammy of a diagnosis out of the blue, there are worse ones out there. I should get several good years…maybe more than several. There’s a promising drug. And if I get really sick, there’s a potential “get out of jail free” card at the end of it in the form of a transplant. Certainly there are elevated risks for scary cancers, but I’m not the only one in that boat and I’m doing what I can via diet and other healthy behaviors, including trying not to spend morose hours thinking about dark “what ifs.”
If you’ve made it reading this far, feel free to get in touch if you want to discuss or show support. The more I have talked about it, the better I have felt. If you see an article or something I might find useful, please by all means send it along. I don’t mind if you tell others. I didn’t bring this on myself (as far as very smart doctors can tell, anyway) and I’m not embarrassed, so feel free to share. Although I’m not especially religious, I am of the opinion that we’re all connected and if people keep me in their thoughts or take the time to connect, it can only be a good thing.
So, onward to the adventures! I’m stable today and there’s hope for tomorrow.