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Liver transplant - Let's support each other
What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?
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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?
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1 ReactionThat 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.
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.
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2 ReactionsHi, @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?
@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?
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1 ReactionI’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.
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2 Reactions@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.
Thank you for the link!
@rosemarya yes it has been a long 2 years for me but now I can look back and be thankful, grateful for where I am today. I remember members who told me to hang tight and that my time will come. Now I am advising others that the call will come. I never thought I'd get to this other side. Thank you for your guidance snd unfailing support ❤
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2 ReactionsYes, I am waiting.went to ER for this twice. Hard to work 40 hours a week. My last episode and ct scan they found tumor. I have had a tace procedure.it didn't work. Going through radiation now.