Get your pencil ready. Here's the book on what you can easily track regarding a worsening PBC/liver function protocol.
- Liver cirrhosis -
- Portal hypertension -
- Esophageal varices -
- Ascites -
That's a lot of stuff. The trick of managing pbc and minimizing its impact on your QOL is to discover things that are happening inside you as soon as you can, that can be dealt with.
For example, the PBC treatment protocol at my hospital for treatment is to perform MRIs w and w/o contrast every 6 months. This will reveal the appearance of any of the 3 things above. Liver ultra sounds are better than nothing but don't go as deep into the liver as MRIs (and they are cheaper to perform). The 1st time MRIs and EGDs are done generates your baseline for tracking the progression as you journey on. The varices are easily viewed -- and banded if necessary -- with an EGD procedure.

Ascites -- fluid buildup in the abdomen -- can be ID'd by your PCP at your annual -- it now should be semi-annual -- checkup.

If you are a medicare member, most of your costs regarding PBC treatment should be covered. The government would rather support this aggressive treatment plan than pay for a transplant which I believe still is covered 100% by D.C.

Know this. If your hep/hospital won't agree to take an aggressive approach it's because they aren't set up to do mri's and EGD's.
Go to the Cleveland Clinic site and/or the Mayo site and cobble together a treatment plan that you present to your hep. Go to Utube and see what docs are saying about what the best way is to stay in charge of your PBC.
Remember, this is a disease that is just beginning to get the research $$s needed to teach docs how to handle it. Do not mistake a doc's white coat for experience or classroom teaching regarding what PBC is and isn't, and what treatment alternatives exist.

I have become a "concierge" for PBC because the more I learn about it the less I worry about the fact there is no cure, and it doesn't bother me that my hep doesn't know how to cure me. I have become a stakeholder in how my PBC affects my QOL, and I view any docs working on my PBC as equal stakeholders.

Regular daily exercise, filtered ice water, daily 1-hour naps, blueberries, organic corn flakes are my narcotic. My only dietary transgression is chocolate. But I have become a devotee of 72% cocoa baking chip snacking so I am minimizing the worst
thing about chocolate.

Since you now are in charge of your PBC, learn about what you can do to stay happy with Self as you journey on.

"HI," I said to the doc I was meeting for the 1st time, "I'm Pete...I'm my own concierge....glad to have you on my team."

I left out of my 1st answer above about. reasons for 6-month mri's::discovery of earliest sign of liver cancer....

Peter

Great info Pete! You have to be your own advocate :)