I was diagnosed just 2 months ago with PBC and the news terrified me as I had never heard of this disease before. As my mother is in the final stage of cirrhosis, I have watched her decline and have been taking care of her, so I know how serious cirrhosis is and the thought of following in her footsteps is completely overwhelming to me.
This PBC Foundation site has helped me tremendously in coming to terms with this disease and learning what to expect by reading about everyone's experiences with this disease.
Written by
GhostHunter
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welcome to our merry band. Hopefully with treatment your PBC will be slowed so that you can enjoy your life. I am sorry to read of your mother's struggle. I looked after my mother who had dementia, it is a terrfying job but also a rewarding one. I was diagnosed in 2006 but like many others certainly had it long before. I am now 66 and determined in spite of some of the difficulties of PBC to enjoy life.
If you have not already done so join The PBC Foundation, free to join through the icon above where there is plenty of information in the members section.
There is also LiverNorth who have a DVD about PBC that they can send in the UK for a small donation.
We are a good bunch on here always happy to help where we can.
Apologies for my false start I am on a tablet - technology!!!!
Hi Tbeckel, from your pic you look young so I'm presuming you have been diagnosed at the early stages. This means you mY not ever experience cirrhosis yourself providing you get the appropriate treatment for PBC. We take the meds and look after ourselves the best we can. Do not worry. I see my PBC as a blessing. Before I knew I had it, I didn't really live life to the fullest and now I feel like it's given me a kick up the bum to be my best self and take all the opportunities I get and not waste any time. There is a period were you feel like 'why me?' and wollow but there are much worse medical conditions to have than this. Best of luck to you. Find the right Hepatologist and take your meds, you'll be fine!
Feel free to contact us directly for a chat and we can reassure you, in very specific terms.
PBC has changed over the years in terms of what we know, how we treat, how we manage, different medicines available and our understanding of progression and/or risk.
PBC today is very diffeent to PBC diagnosed 20, 10 or even just 5 years ago.
We have the information to help. Do contact the office and we can help you.
It took me a year to figure out how to deal with it mentally with a unpredictable, progressive, chronic illness. Like Laura I don't 2nd guess if I should do something fun now. I'm not going to lie its not easy some days. People even your closest friends will not be able to understand it. Forgive them because they dont know how to take the news either. Support groups are good because you will feel not so alone.
My best advice is this, live a good life. Eat good, take your meds and have a kick ass time. Travel, start a new hobby and dance a bit more. Dont forget to tell the people you love, that you love them.
4 years in and I have had some really good years. A bit down now, but when I back up. I'm going to have some scrap book worthy fun.
Hopefully, you will remain healthy for along time. Urso should slow things down. Just pretend you don't have it and enjoy life. I work full time and give my worries to God! That's all we really can do!
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