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Liver transplant - Let's support each other

Transplants | Last Active: 1 day ago | Replies (1617)

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@gaylea1

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.

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Replies to "Mind fog or brain fog is an ongoing battle as a symptom prior to transplant. It..."

I 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

I 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.

I also had bad HE. I had it daily for nearly 2 yrs. I have a case pending where I’m trying to prove that having excessive HE for an extending period of time. I believe it has caused permanent brain damage. After transplant my memory has been different. I suffer from instant memory loss and short term memory. I can’t remember to turn the stove off or I forget I have food in the oven. I’ve even left home with the food burning in the stove. I’m only 51 yrs.old. I was 47 when I got my new liver.its been 4 years. Have you noticed or anyone else who’s reading this,noticed these things happening to you. Remember<I’m not saying I have episodes of HE. I’m saying that when I did,it left permenant damage.