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Liver transplant - Let's support each other

Transplants | Last Active: Jun 22 9:17am | Replies (1606)

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@tgshomes

Hello, my dad is beginning the transplant process for a new liver at Mayo in Phoenix. I joined this group in hopes that I could share some of the daily struggles and maybe get some help dealing with the day to day life for my mom and my dad. Were battling mind cloudy-ness currently and it’s a struggle. Thanks everyone!

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Replies to "Hello, my dad is beginning the transplant process for a new liver at Mayo in Phoenix...."

Im on the waiting list for over a year now. I see the Dr. At mayo in Rochester mn in march and get ct scan in December...

@tgshomes, Welcome! I am happy that your dad has you to support him during the transplant process. From my experience, the process can be frightening and even lonely. So learning all about it, will benefit your dad, mom, and you. I like to think of Mayo Connect discussions as a way to learn from the patients who have experienced the transplant journey themselves. Be assured that we are available day to day and 24/7. I invite invite your questions any time you think of one.

Other members have shared about their own Brain fog battle, and Hepatic encephalopathy. I want to tag the following members to this conversation. @racing212, @gaylea1, @contentandwell. @livertrex, @wildcat

Is your dad scheduled for his transplant evaluation? What questions do you have?
Is he looking for a living liver donor?

Mind fog or brain fog is an ongoing battle as a symptom prior to transplant. It is quite often linked to a build up of ammonia in your system. Many of us here were put on lactulose (almost like a laxative) and rifaxamin or xifaxamin to help clear our bodies of this build up. I myself fell into an HE coma that I didn't fully come out of for several weeks. Subsequent minor HE episodes followed but only when I reduced my lactulose intake. These episodes can be scary and I actually had my driving license suspended until 9 months post transplant. Ask your hepatologist or transplant coordinator about this. It really shouldn't go unchecked. It can be very disorientating to say the least. I forgot what year it was, the month, day and time. I forgot all my banking codes even my address and phone number. I carried all pertinent emergency names and numbers with me at all times. I even forgot where I was in a grocery store once and had to sit down and take a few minutes to remember. I am not an older person.
Please feel free to ask me anything and I will relate my own personal experience.