New to the community

[Itsmecork]

👋 Hi - I am Corkygirl and live in the US. I have had a rough spring with 2 surgeries, 1 biopsy and now PBC. I am new and am looking for advice and answers. Tired all the time and “quivering” liver. Doc said that the biopsy showed “moderate” progression of the disease. There is so much stuff out on the internet, it is tough to know what to trust and what not to trust.

[ninjagirlwebb]

Sorry about your experiences. You are in the right place & not alone.

I would only trust medical research sites or the pbc orgs. Here’s an article that helps.

Do you have a hepatologist who will be treating you for the pbc? Generally, I usually ask my doctor to explain things to me. Or after I read an article, I summarize my thoughts & ask my questions. That has worked well.

easl.eu/research/our-contri...

[ninjagirlwebb]

When I was diagnosed I got a copy of my biopsy & scheduled an appointment with my doctor to go over it with me and discuss next steps.

Now at every appointment, I have an agenda of discussion points with him.

Hope this helps.

[Itsmecork in reply to ninjagirlwebb]

That is very helpful. Thank you! I want to get copies of my tests. The last one had blanks where the test results should have been. I appreciate the response!

[ninjagirlwebb in reply to Itsmecork]

It is a good idea to have copies of everything. That way you can take them with you to any doctor that you see. They appreciate it too. Just manage it & be your own advocate. Doctors respect when you take charge. 😊