Liver transplant - Let's support each other

@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

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.

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.

@tgsholmes please feel free to ask me any questions about HE episodes.

@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

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?

Thank you! I am getting used to the chat format, and answered all the recent comments first before I saw this one. Now I know how it works!
My Dad and I are very close, and I want to help my mom and myself as much as possible for this long road we are on, and about to be on.
We are currently waiting on the insurance to approve of the transplant, and then we will be proceeding to the testing. The Phoenix, AZ location is the Mayo we are receiving care at. They said his score will be high enough that he will be competitive enough for a deceased donor, which they would ultimately prefer rather than a living donor.
Thank you so much for your support.

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.

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.