I just tripped over A long post by Robert for the pbc foundation which talked about the way information has changed and how much pbc is not a death sentence now or ever!
I was diagnosed ten years ago
My physician - a woman - told me over the phone - yes I pestered her for a diagnosis but to this day I’m angry because her ego told me that prematurely and she left me to google and discovee the worst possible scenarios ...
The agony and tears - alone as I read it up. When I finally got her , after a liver biopsy , and with family as support , she had on her hands the same google print out that she then slowly went through with all the feared outcomes . As it was 25 pages long ( I swear) she often said blah blah..,
I reeled our ofvthat office crying and part of that was that awful life expectancy from diagnosis stuff and she let me go . The next time I saw her she bade me fare well as she was off to work In Another country. I did get out of her the name of gastro specialist which I see privately once a year who though in his mid 60s is a kind considered. Careful and informed man . Lucky me but I will never forget that day in her office and I realise how lucky I wS to find the nuturing pbc Foundation and the extended family therein. It certainly saved and continues to keep me well informed and reasoned in my approach to MY pbc all the way from New Zealand