Tuesday's Tip

[DonnaBoll]

Paraphrased from Dr. Jones' book, The Definitive Guide for Patients with Primary Biliary Cholangitis -

When we are diagnosed with PBC he often tells his patients that "we have to play with the hand we are dealt". He goes on to say that there are 3 ways at looking at this.

1. No one wants any disease. Maybe you have PBC but if you haven't been diagnosed with it yet, it doesn't mean you don't have the disease. The 'good' news about being diagnosed is that you can then get on with the treatment for it. The earlier the disease is diagnosed, then the better the response most likely.

2. If you have had various symptoms, maybe for years, a diagnosis finally gives validity to them. You know what you have - giving an explanation for how you've felt.

3. If you have been diagnosed, then you have a disease that is fairly well understood and is relatively straight forward to treat.

As an aside, he mentions someone he greatly admires, Paul McGee. He is also called SUMO guy. His book is highly recommended by Dr. Jones. Paul's mantra is STOP, UNDERSTAND, and MOVE-ON. Pause and take the time to understand what PBC is, and take control of all you can about it.

I googled Paul McGee. Looks like he has several books that I encourage you all to investigate. Any one of them might be helpful to us - even in our daily lives.

Have a good day!!!!

-

[SukiLondon]

Good Morning Donna, I totally agree with Dr Jones, you have to accept your diagnosis and deal with it as best you can, no-one asked to be given this disease, but it is fairly straightforward to treat and there are more and more ways to treat it now than ever before and ways we can help ourselves to combat it. There is also much more advice and knowledge available to us than when I was first diagnosed, and of course fabulous support from our PBC groups.

I follow Paul McGee (SUMO Guy) on Instagram and he's a very motivational speaker, I think his book is called Shut UP - Move ON - just as good advice though.

Thanks for all your posts and advice.

Susie

[DonnaBoll Administrator in reply to SukiLondon]

You are so welcome! I always appreciate any feedback from the members of this group. I know when I was first diagnosed back in 1985, treatment of PBC was very different. Where I saw my hepatologist, they would send me home with a huge bag full of Urso samples. The only way to know if you progressed in the disease or not was to have a liver biopsy. There were no fibroscans or not even doing many US. Before I was transplanted in 2005, I had 9 liver biopsies! awful... but unfortunately the only tool they had back then. You are so right about having so many more tools now. Thank Goodness!!