Hi everyone.
I am new here. Not happy about being here! but extremely thankful that there is a forum of others with the same illness I have been feeling very alone and depressed since my bloods last week and my specialist dropped this bombshell on me in a very rough way. Telling me its as "rare as hens teeth" etc etc. I thought I was going to die by Christmas the way he put it to me.
Anyways, I also have Hashimotos Thyroiditis (diagnosed in September) so these last few months have been rather tough for me. I am 37 with children, 5, 8 and 9.
I am struggling with the idea that I am "sick". Hardly ever been sick in my life - even with coughs, colds etc. I always imagined I would lead a lovely long healthy life so this has been a real kick in the guts.
Just wondered how many of you have had liver transplants, or now long it is since you have been diagnosed. And how your health is once you are on any meds? Also anyone else got another autoimmune with the PBC?
Would love to hear from you
Hi Whitestar. I had a transplant in 2004 only because I was not diagnosed until my liver was badly damaged. Five years ago PBC was found in my new liver and I started taking Urso straight away and my liver function has reamained stable ever since. I also have thyroid problems which is another autoimmune desease and often goes Han in hand with PBC. The thing to concentrate on is the fact that the majority of sufferers live to old age and usually die of something else. Have you joined the PBC foundation? They are a fountain of information and great support. Their website is pbcfoundation.org.
Hi there, thanks for this. Im feeling a lot calmer after reading other peoples stories on here. Thank goodness for these forums! I was just getting over the thyroid news and I was landed with this too
Lovely to talk to others in the same boat. Thanks