Tuesday's Tips

[DonnaBoll]

Who or what helped you the most getting over the initial shock of your diagnosis?

[Turquoise2075]

Hi Donna, The thing that helped me was doing my own research. When I first was told I had it, it was referred to as primary biliary cirrhosis and I was given a very out of date pamphlet by my first liver specialist. So it seemed grim at first. But by researching online I discovered it’s now cholangitis, not cirrhosis, and the prognosis is not as bad as it first seemed. Because I was given the old name first, the info that came up when I looked it up online was outdated and more depressing. However, once I found newer info there was more hope. Finding sources of info such as The PBC Foundation was very helpful too, and also finding this forum.

[DonnaBoll Administrator in reply to Turquoise2075]

You are so right about taking matter into your own hand to find the accurate and up to date information when first diagnosed. It's unfortunate, though, that so much damage is often done by someone 'googling. That info about life expectancy is the absolute worst thing they can read!! The PBC Foundation is an amazing source of information, education, and support. The Canadian PBC Society and The American Liver Foundation along with the Mayo and Clevelands Clinics are good sources as well. I have seen a hepatologist since I was 35 - I am now 74 and have never received one pamphlet from any of them. UGH!!!! It seems like such a simple thing to do. The American Liver Foundation has pamphlets any one can get. It's such a simple thing but I often wonder if the docs know where to go for information.

[Turquoise2075 in reply to DonnaBoll]

Yes, googling can go well or badly depending what you find. As I was initially given the old name of the condition I only saw outdated info when I googled. But by keeping on searching I eventually found up to date things that made it sound like I didn't have such a depressing prognosis after all. All of that happened before I even got to the liver specialist because it was a GP who initially told me I was AMA positive and therefore almost certainly had PBC. So at least I was a bit more informed by the time the liver specialist gave me the out of date pamphlet. I'm sorry you've never been given a pamphlet! How wonderful it would be if every specialist directed patients to helpful resources such as the PBC Foundation when diagnosed or provided an up to date pamphlet. Thank you for mentioning those other resources too.

[DonnaBoll Administrator in reply to Turquoise2075]

I just have to hope that the new members do find the right sources quickly before that initial damage is done. Once you've read something scary ( and not true) it's hard to get that out of your head. I, too, am so glad to be associated with The PBC Foundation. Their passion and dedication is unparalleled by any other organization that I know of.