There’s no clinically-proven way to slow PSC progression. But I believe diet could make positive outcomes more likely. So in early August I began making changes to the way I eat.

And in my initial research, I also saw that I should be making things easier on my renal-hepatic systems by drinking more Water. I have never focused on this, and used to drink very little each day. So I stepped it up. This was hard for me and I still haven’t gotten quite up to the 2 liters that was recommended. But I’m doing much better than prior to PSC and at present my 7-day average is 1.7 liters.

Although these were self-directed changes, they didn’t seem particularly risky. But I had questions and I pushed back on my care team until I secured an appointment with a dietician who is familiar with liver disease.

Just because the changes didn’t seem risky doesn’t mean they weren’t difficult.

• I struggled to match up what I had eaten before with what would work now. And how would we deal with my needs versus my husband’s?
• I missed certain foods. Full-fat dairy and ice cream had been indulgent vices…gone now.
• As I ate many more raw vegetables, I was painfully bloated. With the additional water as well, I felt full all the time. As a result I was under calories by about 500 per day across the first 4 days, and it didn’t feel good.

But a little at a time, foods were added that helped fill in the missing calories. (Hello, Almond Butter!) And my body got used to the new types of foods.

Dietician adjustments

The Mayo dietician was kind and helpful. After a brief health history, I launched into my questions. (Summarized answers are in parentheses)

• Are my weight and my calorie goals OK? (Yes, no need to lose weight, despite borderline “overweight”BMI at 155 lbs)
• Are fat-free foods (like cheese) full of other “bad” things and better left off the table? (Not necessarily)
• What about artificial sweeteners? (If I find them necessary, stick to stevia or monk fruit)
• Given that my liver is functioning well at present, how should I think about sodium? (Keep it under 2,000mg/day, which isn’t considered a “low sodium diet” – just a healthy recommendation)
• What else should I be watching? (Make sure to get enough protein, calcium, Vitamin D and the fat soluble vitamins)
• What about the multivitamin I had been taking? (Confirmed it should be continued)
• Should I be worrying about macro splits or net carbs? (No, not really. Stick to the sat fat, sugar, protein, calcium, sodium guidelines)
• Online research indicated a plant-based diet. What should this look like? (Aim for 3+ plant-based dinners/lunches per week)
• Anything else? (Think about diet on an 80/20 rule. We’re looking for long-term patterns, Deviation 20% of the time isn’t going to derail the health benefits if 80% of the time I’m adhering to guidelines)

With sat fat and added sugar (mostly) under control and (usually) getting up to my calorie target, I worked on ensuring I met the Protein and Calcium goals. This layered approach of working on one set of guidelines, then adding others seemed like it was working well, despite the fact that the impact of my daily meals was pretty stark. It made me realize that what I had considered “healthy” eating in our prior diet wasn’t as healthy as I had thought.

I still sometimes struggled to get up to my calorie goal. I’d near the end of the day and had a hard time identifying foods that would close the calorie gap while not putting me over on saturated fats. For whatever reason, I had not found it hard to cut added sugars and I was often well below the goal, at 3-5g versus my allotment at 20g, but I was always right at the upper limit for saturated fat. And at this point I wasn’t actually worrying about sodium yet.

DASH and tackling salt

When I went to implement the sodium limits, the wheels kind of fell off the wagon. While I didn’t have too much trouble cutting added sugars, most of the ease was because there were still a wide variety of sweet things I could eat, such as dried dates. But I have always gravitated toward salt rather than sugar and there aren’t any good ways around the salt reduction. Suddenly foods that seemed to be working for me in the prior restrictions were no longer viable. All of the fat-free cheeses were terribly high in sodium. Guacamole or pesto tasted unacceptably bland without the salt. I spent a couple days very upset about the impact of this restriction.

As I researched online for recipes, I stumbled on the realization that what I thought was a nuanced, self-directed diet was actually a well-established, long-standing approach called DASH (Dietary Approaches to Stop Hypertension). My blood pressure is fine, but the DASH guidelines are a match for what I was implementing. This was also somewhat disappointing or embarrassing. “My” diet had been around since the 90s and I hadn’t created anything new or personalized for my situation.

Where I stand today

I am doing better with the salt limits, finding other ways to deliver flavor. But it is still really hard.

I’ve steadily lost weight since implementing the dietary restrictions, to the point to where I’ve needed to purchase some new clothing. We don’t have a scale, so I don’t really know where I stand, but it makes sense that if I am sometimes having trouble getting up to the calorie goal, weight will drop. I don’t think I’ve lost too much, but I also am at the point where I probably need to not lose any more. And I need some data about whether the calorie goal I’m using is accurate for my body versus merely being an age/gender recommendation.

We’re visiting the kids in Wisconsin soon and I’ve made a couple appointments to help answer these questions about body composition and appropriate weight-maintenance calorie goals.