Liver transplant - Let's support each other

@luckonetj and @jim1208, I appreciate your sharing about sobriety, recovery and life. Did you know that there is an Addiction & Recovery group on Connect here: https://connect.mayoclinic.org/group/addiction-recovery/

I would welcome your participation in that group.

I’ve learned so much. The group noticed my trembling hands and suggested I look into lactulose. We have guest speakers sometimes. New transplant patients come while they’re still hospitalized. Caregivers ask a lot of questions. It’s so nice to be able to talk to and listen to a group that totally understand. We laugh a lot.

I’m very glad to be at Mayo and really like my team.

@kltchrmn, Waiting for a transplant is a true test of patience. I think that you are most fortunate to be a patient at Mayo. And you are fortunate to be so near to a support group! I live in Kentucky, and there is no support group here, I felt completely alone when I was developing liver failure. I was flown to Mayo from ICU where I did live for a while and receive my transplant. When I returned home afterwards, I began looking for someone to talk to, that is when I found Mayo Connect.
@kltchrmn, What kind of things do talk about in a support group?

Hi, @livertrex, and Welcome to Connect. I am happy that you have chosen to participate by sharing your experience. Before my transpant, I did not have HE, but I did not drive because I becamem physically too sick. My husband, who was retired, was my caregiver and my driver when I needed to go somewhere. That was 10 years ago.

How are you getting along since the HE episode? Are you waiting for a liver transplant?

The doctor told me not to drive since I was impaired. I have been dizzy since my ammonia levels went up. My own ammonia levels were so high that I had to go to the ER.

That is a big milestone for you, @gaylea1. This has been one big rollercoaster year for you.
Be careful driving. When I returned to driving after my transplant and recovery, I learned that distractions became a problem for my focus. Even today, I find that I need quiet in my car.

Interesting to me that your Doctor diagnosed encephalopathy without a blood test. I had one incident that scared me. I was due for a parasytethis and my temperature went up to 106. I had a momentary black out. Wrote memory took over and I made it home. That day I went in to get drained and they tested for haptic Encephalopathy. Negative. Must have been the fever. Has anyone made it to Meld 40 without being on the transplant list?

@kltchrmn my license was suspended Dec 2016 for the same reason. The doctors just signed the forms today to reinstate my license at our ministry of transportation. I lived in a fairly rural area - no buses and taxis were expensive to get into the city. I was literally imprisoned at home all that time. Got pretty lonely stuck in the house day after day, month after month and being ill and waiting for the "call". I can't wait to get my license back!

@jim1208
I’m at Mayo Rochester. I just started year three on the list. My MELD has been all over the place from my current 11 to 26. At my last check up my doctor stopped my driving due to “overt signs” of Encephalopathy. I have been on medical disability through my employer since January 2nd. Luckily I live in the twin cities and attend a weekly support group for people pre- and post-transplant at the U of M. A little harder now I’m not allowed to drive. I have no idea how long it will be before I’m eligible for transplant.

@jim1208, I want to welcome you to Connect. The wait for a transplant can be a long and lonely time, and I commend you for what you are doing for yourself and others along the way. I am confident that the experiences that you have shared are giving hope to someone else who will read it.

I am a recipient, and I know how long lonely the wait can feel. I joined Connect after my transplant, and I am continually amazed at the strength and courage that are shared here. I am happy that have joined the discussion. I invite you to join in any of the discussions that look interesting to you. Questions and comments are always welcome!
How are you feeling?
And how about your wife, How is she holding up with this waiting? She might enjoy this discussion about What to Pack - https://connect.mayoclinic.org/discussion/packing-question/