PBC diagnosis

[Schuey1]

Just been diagnosed with PBC, and so the rounds of blood tests and USS begin.

I feel lost and unsure of what the future holds 😰

[jane1964]

Hello Schuey1,I was shocked and worried like you when I was diagnosed but that was 12 years ago.I am doing pretty well on the medication Urso hopefully you will do well on Urso too my doctor told me if I did well on It I could hope for the pbc to be something I could live with for long very long time.I recommend looking at the pbc foundation who have a forum on health unlocked as well they have lots of good advice and information. I found them very helpful.Jane

[Schuey1 in reply to jane1964]

Thank you, that is reassuring to know. Ultrasound today was positive so hoping to have a decent life span. Never thought at 52 and working at nhs trust all my life I would be here. Hope the worrying eases off. Feel very lost and lonely. Appreciate your kind words. Thank you 😊

[Hidden in reply to Schuey1]

Schuey1 - the worst bit of PBC can be hearing that you have it. It takes a while to understand that you are still the same person and that PBC is just something you will manage to live with. As jane1964 says, PBC Foundation, free membership, has access to all the information you will need, and all the support you could want. Along with this site, it will fill the gap that can seem to exist between us and the people in our circle of friends and acquaintances who don't have this condition and cannot understand how it affects us. Keep us informed of your progress. Do more of the fun things you like to do instead of worrying because autoimmune disease thrives on anxieties. Best wishes

[Candy12]

When I was diagnosed 10 years ago this month I was 56, and I felt numb, I’d never heard of PBC, I couldn't even ask any questions it felt like it was the end of life as I knew it....BUT

The best thing that happened that day was as I left the clinic room after being told, the consultant thrust a piece of paper at me and said learn about it from these people. By then I’d gone into panic mode but a while later I looked at that piece of paper on it was the contact details of the PBC Foundation. That was and is, still the best part of the care I received, it saved my sanity. Do contact them you won’t regret it.

I’am now fast approaching 66, I continued to work full time ( also for the NHS) until I was 62 when I retired. I’am still doing well and continue todo everything I want todo, maybe just a bit slower and possibly that’s age not PBC. I hope our experiences help to alleviate your worry just a little. Have a read of the Health Unlocked PBC page as well.

[Hidden]

Good morning Shuey1,

I have attached a link to the PBC publication from the British Liver Trust website which you may find useful, Also the helpine number is 0800 652 7330 , which is open between 10 am at 2.45 pm Monday to Friday if you wish to talk things through. britishlivertrust.org.uk/li...

Best wishes

Trust9