Hi Susan, I will try to help you with some support as you face this difficult disease. Have you had the tests yet to diagnose whether there is cholangiocarcinoma? What made them suspicious? With me, there were some questionable ‘markers’ in my blood tests. Then they scheduled an ERCP to get samples to biopsy.
Oh my, I know that dealing with the fatigue is a real bother. I used to tell my friends that I was a healthy lady with a sick liver; and that it was causing me to be miserable. After a while I developed jaundice, and there was no questioning my illness – then people said ” I didn’t know you had anything.”…so…don’t let their ‘misunderstanding’ get you down. You have to focus on taking care of yourself, now at this early stage.
I am not at all familiar with this sort of social networking – but I think that there is a way for us to communicate as ‘friends’ thru an ‘inbox’. This might be a little more private. I am going to try to send you a request.