Thursday's Thoughts

[DonnaBoll]

What was your biggest misconception about PBC ? How did you find out what you thought was wrong?

[Sandie17]

that I was going to die. I made mistake if getting on Google. I’ll never forget finding you on Facebook and instantly was put to ease. The info in the files. The list of questions to take to Dr. everything was at my fingertips.

I really don’t dwell about having it much. Take my Urso, get my labs, see Dr once a year Repeat. Best advice for newcomers is stay off Google

[DonnaBoll Administrator in reply to Sandie17]

So glad you were able the support/information you needed. I'm glad you found me too. 🙂 Google can do much damage.

[Wocket in reply to Sandie17]

The first thing my consultant said was not to google it but it was the first thing I did 😈 We need to make sure the truth overtakes all the rubbish that is out there.

[DonnaBoll Administrator in reply to Wocket]

At least he told you not to Google. So many don't even do that. .but if you don't know where else to look then of course Google would be your first 'go to' for information. The truth from accurate sources can make all the difference in living with this disease. I think when we know the truth about a disease we can face it all head on. We surely do that, don't we?! Thanks for sharing. How are you doing now?

[FarahS]

same…worst thing I read was prognosis being 8 years from diagnosis. Then I found this website and was introduced to the PBC foundation and actually spoke to Collette herself. She is an absolute angel and immediately set my mind at ease. I can’t thank this group enough.

[DonnaBoll Administrator in reply to FarahS]

What a difference one conversation can make! Reading the right information and getting support from those who truly know about this complicated disease can make all the difference for sure. Glad you found The PBC Foundation and continue to get so much invaluable information from them. Do you have the PBC app on your phone?

[FarahS in reply to DonnaBoll]

Yes thanks

[SukiLondon]

Hi Donna, firstly thank you to you and all at the PBC Foundation for the support and information you provide to our band of PBC warriors.

I was told I had PBC (known as cirrhosis) at the time of diagnosis by a very young (mid 20's) female Dr, at my Dr's surgery, she quite clearly had no idea what the condition was and when I promptly burst into tears and said, and I remember it quite clearly, "I've got liver cirrhosis, you mean like Gazza and George Best? - I've not even had a drink since New Years Eve!" it was mid-May when I was diagnosed. She just looked at me pityingly and said I'll make an appointment for you with a Liver Specialist.

I came out of the Surgery, still crying, got in my car and immediately googled it (I know, that's the way I roll) the first thing I read was END STAGE LIVER TRANSPLANT - and like the other ladies on here prognosis being about 8 years - that was 7 years ago when I was 55, thankfully I'm 62 now, taking Urso and Obeticholic Acid and feeling much healthier than I was when I was diagnosed, apart from recently being diagnosed with Psoriatic Arthritis - another autoimmune disease to challenge me.

Thank you, thank you, thank you, once again for all the Support. It's a comfort and reassuring that you are here for us.

Susie

[DonnaBoll Administrator in reply to SukiLondon]

Thank for sharing such a 'happy ending' in many ways to a very scary and harsh beginning of your PBC diagnosis.So much harm is done when someone has no idea about the disease themselves and they have no compassion or support to give someone they've just spoken to. And such a terrible time to tell you!! If only doctors would tell patients NOT to Google but that would mean they would have to know that themselves. There is so much education that needs to be done to the health care professtionals then and now, I'm sorry to say. Getting to those reputable sources is crucial. It is a privledge to be a part of this group. Glad to hear you are doing weill on Urso and Ovaliva. We can have a good life despite set backs time to time. I really encourage everyone to get Dr. Jones' book. I got it ,actually from him, when I was in Edinburgh last year. It is truly the Bible for PBC patients. Keep letting us know how you are doing. This can help others as well to know that PBC can be a part of our life and still be productive and 'healthy'.

[ortam]

What did I do to cause this.....even know my Dr. that diagnosis me told me that there was nothing I did to cause it. It took years for me to get over that mind set. It was forums like this that mentally is the biggest help in all my negative thoughts about this disease.

[DonnaBoll Administrator in reply to ortam]

Thanks for sharing with us. So many times we can cause our health issues but not this time. It makes it all the harder to accept when life just happens to us - and our bodies turn against itself. Knowing very little about the disease when diagnosed makes it even more scary for us. Reading all you can helps understand how the disease 'operates'. Do you have Dr. Jones' book? It is so helpful to anyone anywhere on their PBC journey. I hope you continue to find some support here.