@benlam11
I am a transplant recipient, and I am enjoying a quality life since my own transplant. Organ transplant is a seriously complex surgery and it requires that patient and medical team work together both before and afterwards.
My suggestion for you is to find a doctor whom you trust and work with him concerning your current diagnosis, and your current health requirements. You must do your part by taking care of yourself according to those recommendations.

Hi @benlam11 and welcome to Connect. I am a liver transplant recipient and life has been very good since my transplant in October 2016.

I also went a for a long period of time (about a year and a half) with no diagnosis, despite what I discovered after should have been obvious signs and red flags. The issue that initially caused concern was an HE episode on Christmas Eve, 2013. It caused me to be very irrational. My husband wanted to take me to the hospital but I wouldn't go. My daughter was here so she called for an ambulance and I ended up going. The EMTs thought it might be a stroke. The ER doctor thought it was fatigue, deyhydration, and a few other minor issues. By the time I saw him I was actually getting back to normal.

I never had an HE episode bad enough to put me in a coma, but I know that can happen. I did have one that left me pretty unresponsive, and I ended up in the hospital a few times. The PCP I had at that point called me and told me that she thought I had Alzheimer's! As soon as I could find a different PCP I changed doctors.

After my first HE episode my doctors were searching for a diagnosis but somehow never added up the symptoms I had before that -- declining platelet counts, shaky hands, recently diagnosed diabetes, sleeping problems, and fluid retention in my feet and ankles. Those were the symptoms that my PCP knew about. There were others that I never thought to mention such as being cold all of the time, and horrendous cramps in my thighs. Because of the HE episodes I went to a neurologist and when I was in the hospital recovering from an HE episode he suggested liver, and they did an ammonia test. Non-alcoholic cirrhosis was diagnosed. I was prescribed lactulose initially to help with the HE episodes. When I got to Boston, the hepatologist prescribed xifaxan which kept me from having an HE episode for almost a year. When I did have one again I had to resume taking lactulose along with xifaxan because that was a sign that my liver condition had worsened.

I then went to Boston for treatment. I live in southern NH, so Boston is about 55 miles down the highway. What I learned from my experience was if I ever go for any length of time without a diagnosis I will definitely head to Boston to one of the major medical centers. My hospital of choice there is Mass General (MGH). I waited almost a year and a half to get a transplant, and during that time MGH tended to my medical care excellently. I love that hospital and now go there for pretty much everything except for my PCP.

My liver and pancreas were not effected so that was not an issue. Now I do have monthly lab work to make sure all is good, and so far it is.

Are you now going through testing at Mayo to determine if you are eligible for a transplant? I presume you must be. Please keep us up to date on how that's going, and feel free to ask any questions we might be able to answer.
JK