Not sure how I feel reading the assessment from my consultant as follows.
"I have no overt concerns from a liver disease perspective as she has lived years longer than the estimated life expectancy of someone with PBC."
As I never knew I had an estimated life expectancy, its die with it not from it these days, it came as a surprise! Should I be pleased or annoyed?
Hi Oidra
What an odd thing to say and rather out of date! I have heard, on several occasions, the PBC Foundation report on a woman who passed away with PBC not because of it and she was over 100. We are fortunate to have URSO and now second line therapies which I believe, again from what I have learned over the years, gives us a similar life expectancy to the general population.
I think I would be irritated, then I think I would feel that he does not know the subject of PBC as well as might be liked.
We really do have to be our own advocates and thankfully with pages like this we can learn so much from each other and sometimes on the subject of PBC we may know better how to handle it than a specialist who is only skimming the surface.
I hope you are keeping and feeling well.
Thank you for asking, yes I am very well now after a second go at covid which took me a while to get back to full strength.
wow. I would ask for another consultant. Clearly he is not up to date on pbc! My hepatologist told me when I was diagnosed, pbc when managed gives us a normal life expectancy no different from the general population.
Thank you, I do agree with you, so still irritated! Olwen
Pbc/AIH
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