Good news abounds
I’ve been a little slow with this post, but things have been going extremely well.
- PSC Medical Team:
- I am now under the care of a medical doctor in Mayo’s Transplant Hepatology department.
- This is a huge relief versus the Nurse Practitioner who 1) never seemed to have time to answer questions, 2) gave me incorrect answers on a few pretty important ones, and 3) told me in no uncertain terms that I would have to wait until I was in “end stage liver failure” before I would be able to see an MD. It was distressing.
- I raised my hand (politely) and now I am with an actual doctor…who seems wonderful. I couldn’t be happier.
- Crohn’s Assessment and Medical Team:
- My Crohn’s tests have shown that my disease is extremely mild.
- I am being seen by a doctor who is a leader in the field of IBD and who knows all about PSC.
- Next week I will go in to learn about the treatment plan.
- November tests:
- All of my MRI & bloodwork tests at my 3-month follow up showed either positive news or stability.
- The consulting hematologist concluded that my hepatic blood clot was caused by the biopsy, which is great news because it was possible that I was just “someone who makes clots in her liver now.” Given that it was probaby a specific event that caused the clot, it is unlikely to happen again just out of the blue.
- The MRI showed that the clot had reduced. Also, the radiologist’s narrative characterized it as a “tiny thrombosis in a small intrahepatic vein,” which was news to me. Sounds important but a lot less grave than I had thought.
- My bile ducts, which is the main thing that gets messed up by PSC, were predictably still messed up but nothing was worse.
- My liver enzymes were worse (higher), but from what I understand, they bounce around with PSC. When I got another blood test on my own a few weeks later, the levels had gone down a bit.
- I went to an outside lab and ordered my own levels of CA 19-9, which can indicate cholangiocarcinoma (CCA, bile duct cancer). It isn’t a great test in that many people who receive a high score do not actually have CCA. But Mayo hadn’t ever tested it and I wanted to know. My score was 8 and normal is <37. So now I have a baseline. The Mayo team will check it in March ‘26.
- RV / housing:
- It isn’t great news, but the RV delivery has been pushed back to February 10th. I don’t mind much because it gives me the time that may end up being required in order to get on a treatment for Crohn’s.
- Our AirBnB was rented right after our stay, so we couldn’t extend, which meant the hassle of another move within Jacksonville before heading out to Colorado. BUT we just learned today that the other group canceled and now we can just stay in the same house up until February 10th.
So, yay us!
Holiday Travels & Family Time
I enjoyed a trip to Rockford over Thanksgiving, spending 6 days with my parents. It was peaceful time well spent. They’re warm, smart, and supportive.
My sister and her family hosted us for the Thanksgiving meal, which was delicious. She was kind enough to accommodate my dietary requests.
While our daughter wasn’t able to make the trip, our son joined the festivities and it was so nice to catch up with him. For the first time, his long-term girlfriend joined us for the meal, meeting some of the relatives for the first time.
Rich stayed back in Florida over Thanksgiving, but we will board the dogs and head north again at the end of December for an extended visit with his family, at the same farm that was out refuge when I was first diagnosed. We’ve rented an AirBnB up there and both of our kids will join us. We’re really looking forward to seeing everyone, especially since the medical news and trajectory seem so different now than back in August. I expect there will be more laughter and time for joy.
Gut Microbiome
People with PSC have lower diversity in their gut microbiome as well as some notable imbalances. I’m going to call this “continued good news”because although my microbiome isn’t stellar, it isn’t in bad shape the way that many PSC patients see. Since taking the test in late September I’ve made some dietary changes to try & increase my gut health…things that are healthy and not risky like adding fermented foods and increasing fiber diversity. I plan to re-take the test in January or February and compare the results, realizing that this kind of at-home test isn’t as medically rigorous as one might like. I plan to use the results directionally.
The test came from Thorne, whose vitamins I have used for years. Despite that an at-home biome analysis is a little unscientific, they’re a quite well-regarded company overall.
After taking the test, Thorne provides some analysis and results, but they’re couched in marketing-speak and grouped into categories, so I downloaded the CSV of my bacterial populations and asked ChatGPT to analyze the results.
While there are only three “yellow” areas, some of the green ones are toward the lower end of the spectrum. It looks like there’s room for improvement.
Aside from this chart analyzing features that are typically seen in PSC, ChatGPT thought my gut was in fairly decent shape.
We had originally planned to compare my results to Rich’s, because after all we’ve eaten virtually identical diets for years and years. But his test had some kind of contamination and they’ve sent him a re-test for free. (Good customer service!) Probably we will both do them when I repeat my analysis in first quarter.