Liver transplant - Let's support each other

I feel like a failure because of not being able to work. I have good mornings but have to nap daily for 2 to 3 hours.

Glad the hard part of your journey is behind you!

@jim1208 I am very familiar with your symptoms. I was also very cold all of the time. I was so bundled up in bed in bed it was ridiculous. I went about 16 or 17 months on the waiting list and then somehow was transplanted sooner than anticipated, in September of 2016, at MELD 28. I was about to have my MELD increased and things had gone downhill so perhaps they can take all of that into account.
I had severe HE episodes but most of the time I was very cognitive and able to live my normal life. I did have additional symptoms -- lowering platelet counts, cramps in my legs and hands, fluid retention in my feet frequently, and my handwriting deteriorated terribly. My hands were very shaky. I could not take a picture they were so shaky, and I couldn't get a spoonful of soup to my mouth without it spilling. Also, I did have to nap daily.

You are in one of those tough situations. Not sick enough to get high on the list, but perhaps feeling miserable? I guess you just have to hang in there until things get worse, but some people are able to avoid a transplant with a good diet and other methods. That of course is the best, if you are feeling fairly well.
JK

@gaylea1 That's a long spell in the hospital; for HE. I was in a few times for two or three days. Lactulose definitely helps, but xifaxan helped me even more. Taking that I went almost a year with no HE episodes. When I did have one again they said it was because my liver was getting worse and I had resume taking lactulose.
When I got close to my transplant things really went downhill and both my husband and my sister were prepared for the worse. My kids live away and were not aware of how bad I was.
JK

@jim1208, you are not a failure. Your life is in a holding pattern. And no one has a crystal ball to predict the future. So keep on forging ahead with baby steps, one day at a time. That includes keeping doctor appointments and taking good care of you - even taking naps.
When do you see doctor again for update?

July 24th I am back at Mayo. Thank you so much!

Do you have to stay over night? Have you looked into Gift of Life House?

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.

@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.

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.