Encephalopathy anyone?

TheMac

Good morning from CT.

I am quite new here so let me start by saying to everyone, thank you! I had been searching for this type of forum to listen and share with others about the common bond- Transplant.

I did a search for a forum topic about this but could not find anything. Please forgive me if this topic was already discussed.

O.K. How are people who suffered through encephalopathy pre- transplant healing? Are you healing? Do you still feel lost in your mind? And does anyone have ideas or examples of their recovery story?

thanks!!

P.S. I will share at another time my encephalopathy journey. It is a long, traumatic Everest climb and fall leaving me at the bottom of brokenness.

fern22

Hi there!! Welcome! Love that you started this discussion! I personally have not been diagnosed with encephalopathy at any point. However, I have experienced tons of brain fog. Pretty severe. To the point where I cant put a timeline together for the 2 years of treatment sometimes. I was in such a fog its hard to remember what happened and where. And often times I dont remember that things even happened, even after someone explains the entire situation and event to me. Despite being there, its like I wasnt even there.

Melsamm

Hi welcome TheMac, I had HE Pre-TP, it was the most horrible experience, I spent some time in the hospital, terrified my family /friends. I hope I never ever have to use lactoluse again. It was a scary time in my liver disease.

Starboobear

Hi TheMac, I am new to here. This is so awesome that there is a place like this we can all discuss things freely. I myself am 2 years post liver Transplant. I suffered several bouts of HE including being in full coma. I had to learn relearn things, faces, and I have permanent memory loss.

After transplant I have been working hard on my short term memory with games, notes and watch/phone reminders.

I still loose my words sometimes, I still get flustered when tired/having a hard time making decisions. My short term memory is almost nonexistent and I swear I have ADHD now. Lol

I warm everyone and I tell them I am who I am now and I can not change this so you will have to find a way to not be mad or annoyed if I forget or shut down. I do my best so try not to take it personally.

Things definitely have improved however my neurologist says this is me now at this point so work with what you have.

one great thing is.. that I can watch a movie or show and then watch it again later like it’s new.