I have been recently diagnosed with PBC can anyone share anything about this, there is talk already about a transplant. any comments ??

[nannan]

[Hidden]

Hi there

I've also been diagnosed with this - I used the British Liver Trust web site as a good information tool, there's also several pages on facebook for contact with other people in the same situation - hope this helps.

[nannan in reply to Hidden]

Hi Thanks for that, still in the numb stage and some sites I've looked at are so so scary, I have looked at the British Liver Trust and it is helpful. Thanks again.

[Hidden in reply to nannan]

Hi again!

I agree that a lot of the sites are very scary, full of people having a dreadful time - remember everybody's journey is a different one - so don't assume what is written on line is going to happen to you!

there is a lot of very useful information out there, and always be guided by your medical team - they are there to help you.

there is a Primary Biliary cirrhosis dedicated web site, I did sign up for emails but have never heard anything from them.

Keep posting if you need help - sometimes its good to talk!

chin up!

[safetykt in reply to Hidden]

don`t use Facebook....

[debi_p]

Hi

I too have PBC and yes reading the info is scary but remember everyone is different. Have you been in touch with the PBC Foundation? They will send you heaps of Info and also phone numbers you can ring to talk to someone. hope this helps x

[safetykt]

My Mum was diagnosed with PBC 20 years ago. She had a transplant on the 27 july last year in Kings Hospital London. We will be having a wee party next saturday when she celebrates her 70th birthday.

Remember it is not something you did to get PBC and don`t be embarrased to say it - it is an auto-immune chronic disease which is probably linked to a wide range of things which pass down through the maternal genetic line which means that boys are less likely to suffer. My maternal aunts have pancreatitis, rhumatoid arthritis, lupus and systemic osteoporosis. I have Cronhs disease, my younger sister has diverticulitis and the youngest had an ovary removed when she was 22. My 17 year old daughter has polysitic ovary syndrome and crohns disease.

All i can say is keep positive, don`t eat marmalade or grapefruit and if you want I can send you all the "bumpfh" we got from Kings which really did keep mums PBC in check for many years