@stella25 Yes, I was fortunate, and it was the neurologist who first mentioned liver possibly being the cause of the HE episodes. I went to him because it was thought the confusion was from something neurological. From what I know the HE episodes should have been a HUGE red flag, and jaundice should be also.
I never had jaundice which I guess was probably the reason that my liver was not immediately suspected, but not everyone does get jaundice, and sometimes the AST and ALT numbers are not really elevated much.
I am so happy for your son that he was smart, found some answers and persisted in getting a diagnosis.
JK

You have a smart son. Bravo to him for being so aware of his health and for being an advocate for himself. Early on my PCP referred me to GI because he is wise to admit when something needs a specialist's opinion. After reading many other experiences I know how blessed I am to have recieved immediate referral. And then, when it was time for me to go to liver transplant clinic, my GI knew it, amd made referral. Like your son, I didn't have the long wait for appointment, but was seen the following week at the liver clinic at the Univ of Kentucky where I was evaluated for transplant, and listed. I received excellent treatment there. But when the indication of cholangiocarcinoma (and unsuccessful biopsy samples) entered the scene, they knew to refer me to the Mayo Clinic. For me things did get complicated. But by taking one step at a time, and following the direction of my excellent medical providers, I am here and healthy today.
I never experienced any HE episodes, but from the beginning, we were told to be aware of signs. Goes to show how everyone is different!
One of the most comforting things that my GI told me was that PSC patients did well after transplant. And also that by knowing in advance, we had the opportunity to practice healthy lifestyle to be better prepared to carry on.