I was given a lot of information by my hepatologist, I realise that I'm lucky with this.
So my regret isn't direct to me.
I wish I would have been is information for my family especially my grandchildren. When you're having a flare with the joys of new symptoms, they're confused about why I'm yellow or sleeping so much.
They really don't understand why Nanny can't be around them when they're ill.
I have found a leaflet but it doesn't make sense to a child. Can someone write a story book to read with them?
I have learned it's way worse for people who love me than it is for me and I wasn't prepared for how much