Congential Hepatic Fibrosis

I am 32 years old and dignosed with Congential Hepatic Fibrosis.  I was told that I have portal hypertension and vericous veins in my esphagus.  I am currently taking propanolol.  I would just like more information on the disease, I am finding it difficult to find anything.  The doctors in my area are not that familiar with this disease, I am nervous that I don't have all the facts and I am not getting the best care that I may need.  Any information would be greatly appreciated.