To people who have been transplanted due to PBC how long were you diagnosed with PBC when you needed a transplant?

Also do you think( when you now think of all the symptoms you can have with PBC) if you actually had it for much longer than when you were diagnosed? I am asking as I do wonder if that is the way I am heading as bloods not so good at present. I was diagnosed in 2002 after suffering the symptoms for a yr but when I think back I have had stomach probs since the age of 15 (27 yrs ago!) and suffered with fatigue and wrist pains since about the age of 19 but thought it was just the effects of studying and socialising as most students do! Any comments would be welcome. Thanks.

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  • I was diagnosed with PBC in May 2003 and had my transplant in January 2004 but I was already at "end stage" then. When I look back I had been having most of the symptoms for over 20 years before that and had been seeing various specialists for separate symptoms for over 5 years. Where I live very little was known about PBC at that time and most medical people had never heard of it. Even when I went yellow I was taken into hospital for testing for liver cancer and even then was not tested for PBC. I'm sure your consultant will let you know when a transplant is necessary.

  • Thanks Nanabn hope your keeping well I am always curious about this disease and maybe one day when I have more time on my hands and feel more energetic will do some research into it myself. Please God will know more re where I am at when I see my consultant next month. ta again. Take care. x

  • Its a bit of a 'how long is a piece of string?' question as most of us realise we had symptoms way before diagnosis and time between diagnosis and transplant depends on how bad your liver was at the time of diagnosis, SO yes your specialist will know when you are ready for transplant if you get to that stage.

  • Thanks for reply LindaRose. Hopefully wont ever need one or at least that it might be a while yet hoping in meantime something other than transplant for PBC will be discovered. Live in hope. Bfn:-)

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