Liver transplant - Let's support each other

@jim1208 I have signs of HE at 11. Shaking hands at times, easily off-balance, slowdown in speech, difficult word retrieval. My worst episode was in December 2017. Was hospitalized after a bout with norovirus - total lack of memory. My MELD has gone down since then. No serious attacks since then, just the symptoms.

I can sleep them off. I definitely feel like I am losing my mind. Always dizzy and lightheaded. My right hand has started shaking some now.

@livertrex I too welcome you to Connect.
When I had cirrhosis I too had HE episodes but mine were distinct and did not have a constant affect on me. Do you have a pretty much constant state of mild confusion and dizziness? Some of my episodes did land me in the hospital and my ammonia was very high. I also had episodes that I could just sleep off. The more serious ones were really bad. I remember most of them, but there are a few I do not. I have very vague memories of getting to the hospital when I had serious episodes. They were very scary for me, I felt like I was losing my mind.
JK

@jim1208 You are having HE at a MELD of only 11? I didn't know that could happen. The thing that brought my cirrhosis to the attention of my doctor was an HE episode. It still took almost a year and a half to get a diagnosis despite having other symptoms such as lowering platelet counts, shaky hands, edema, and chills. I was then sent to a hepatologist and she immediately prescribed xifaxan. I was on lactulose. I didn't need lactulose for almost a year while on xifaxan but then as my cirrhosis progressed I had another HE episode so had to resume taking lactulose along with xifaxan.
I was very lucky. When I was not having an HE episode my cognitive abilities were not affected at all. I was dreading that day that they take my license away but it didn't happen. The last summer prior to transplant I told my husband that I didn't want to have drive far myself. I always either woke up having an HE episode, or had warning symptoms. I would get a bad stomach ache. If I was out and my stomach hurt I would immediately head home. Sometimes nothing further happened but better safe than sorry.

@luckonetj I was in the hospital due to an undiagnosed HE episode when the neurologist suspected that it was my liver so that was when they tested me for ammonia. I had been sent to a neurologist because it was thought that the confusion episodes were neurological, but of course they were not.
How could a person get that high a MELD without being on the transplant list? I thought when it hit a certain number that was when you were put on the list. Mine was in the teens when I was put on the list and fortunate to get transplanted at MELD 28. I was due for my MELD to be increased at the end of the month and I am sure it would have been in the 30s at that point. I had really gone downhill.
JK

@gaylea1 What does the doctor say about still being light headed? I had nothing like that after my transplant, just some fatigue for a while. I hope the light-headedness goes away soon, I would not want to live like that on a daily basis. Is it pretty much all of the time?
JK

@jim1208 and all.
Here is a helpful hint: when you are directing your response to a particular person you can use that person’s @name and they will receive a notification that they have been mentioned.

Thank you so much. I needed to hear that.

Yes maam I am staying overnight. Have to, Mayo is 140 miles from home. I get far to run down to drive that much. Yes I did the tour of The Gift of Life house.

@jim1208 You are not a faliure! Please try to keep positive. It seems that things are difficult now and they are. I remember feeling low many times but just knowing that there is light at the end of the tunnel really helps. You will get through this. Nap when you feel tired. Bundle up when your cold. Treat yourself well. Keep strong. We are all here to help you through this. The group is always here when you have questions or concerns. We're not doctors but sharing experiences helps so much.

Jim, you are following Doctors orders. Seams to me you're a good patient. In my case I had limited choices and non existent advice from my first doctor.