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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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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...
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1 Reaction@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?
@racing212, My transplant evaluation for listing was 10 years ago, so I am depending on your expertise about the evaluation process. Okay?
@tgsholmes please feel free to ask me any questions about HE episodes.
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1 ReactionMind 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.
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2 ReactionsI was 49 when my episodes started.. I had several of them and wake up at different hospital 3 times and one was out of state
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1 ReactionHope i can answer u
@mostlybill @tgshomes I too welcome both of you to Connect.
Bill, how do you feel that you are not the same person? I found the biggest difference for me was a huge amount of gratitude and appreciation of virtually everything. I don’t think those differences really define me though so I have not had a difficult time. My transplant was in September 2016.
@tgshomes your parents are very fortunate that you are so concerned and want to be able to understand better what they both are going through. The “mind cloudy-ness” that you refer to is of course hepatic encephalopathy, or HE. It varies a lot from person to person, mine was not present always but rather in episodes during which I was irrational and sometimes somewhat confrontational. When I saw a hepatologist she put me on xifaxan and I had no HE for almost a year. When they resumed it was assumed it was because my liver had deteriorated further and I had to start taking lactulose also. When I did not an HE episode I could live my normal life. My episodes were sometimes brief and going to bed for a while would cure them, but the worse ones put me in the hospital for two or three days.
Please feel free to ask anything and if it’s something that I or someone else has dealt with we are glad to explain.
JK
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1 ReactionI have HE and am taking borh meds. Did you have these episodes while on the meds?
Very afraid of this but havent had any large episodes yet.
Hello, I am eleven weeks post transplant and doing well with recovery. I am back to work and ready to resume some of my social activities--yoga, music. The great difficulty is drug side effects, particularly prednisone. I will be discussing this with my surgeon, nurse and nephrologist next week.
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