1. < Transplants

Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

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?

Interested in more discussions like this? Go to the Transplants Support Group.

mostlybill | @mostlybill | Nov 8, 2019
In reply to @contentandwell "@mostlybill @tgshomes I too welcome both of you to Connect. Bill, how do you feel that..." + (show)
@contentandwell

@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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Changes? These seem small, yet add up to a strange feeling. I lost most of my muscle mass after an active life. My hands are not my hands anymore--there are no calluses or dirt under my nails, no cuts or splinters. I now have high blood pressure, which I did not have before. And I feel drugged all the time, not in a clear state of mind as I was before transplant. While I know many of these things are resolved with time, these obstacles are difficult now. I notice other small things every day, feelings I never had--things hard to describe or define. It has been difficult getting back to my usual daily schedule as well. Setting goals has also been a challenge, I think mostly due to drug side effect draining my energy and fogging my mind. I am blessed with a wonderful, caring family who sustain my efforts to recover and inspire me to be better.

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racing212 | @racing212 | Nov 8, 2019
In reply to @jeanne5009 "I have HE and am taking borh meds. Did you have these episodes while on the..." + (show)
@jeanne5009

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.

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I'm on both meds and still get have episodes. The. Last one was in August..

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 8, 2019
In reply to @mostlybill "Hello, I am eleven weeks post transplant and doing well with recovery. I am back to..." + (show)
@mostlybill

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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Good Morning, and Congratulations on your successful liver transplant and recovery! My experience has been that it takes some time for our bodies to adjust to these new medications. And over time, your medical team will be able to establish a maintenance dosage that works for you. No two of us are the same, so our antirejection medications and dosages are individualized and monitored via routine labs.
My prednisone dosage was lowered to a maintenance level, so I did not have prednisone related side effects. My biggest bother was that my tacrolimus caused me to tremble, and at 10 years post transplant, I do occasionally experience the trembles. For example: currently, my tacrolimus lab level is within my target range, but a little highter than it has been, so I am experiencing trembling, again.

You are doing the right thing to discuss this with your surgeon. I try to encourage everyone to seek the advice of their medical team, and never to make any changes on their own.
You can read about medications on Transplant Medications 101: Q&A -
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-medications-101-qa/Transplants>Changes after Transplant

Here is a discussion where our members are talking about changes that they have experienced. I found it to be an eye-opening experience to learn about what patients actually experience. Please know that you can add your thoughts, ideas, questions.
https://connect.mayoclinic.org/discussion/changes-after-transplant/

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1 reply
tgshomes | @tgshomes | Nov 8, 2019
In reply to @gaylea1 "@tgsholmes please feel free to ask me any questions about HE episodes." + (show)
@gaylea1

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

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What is a HE Episode?

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1 reply
tgshomes | @tgshomes | Nov 8, 2019
In reply to @contentandwell "@mostlybill @tgshomes I too welcome both of you to Connect. Bill, how do you feel that..." + (show)
@contentandwell

@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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Thank you for your reply! And thank you again, my parents are awesome people and my Dad and I are very close. We run a custom home business together which I have taken on my own, and sometimes I feel like all I want to do is call him and ask him a question, but he literally is so brain fogged, that he can't even get a simple sentence out some days. Other days he is pretty alert and he can talk and have a conversation, but other days he is weak and frail. He is on both Lactalose and Rixfixin (SP) and I am not sure if it is going to get better or worse. He pretty much just sleeps all the time and his appetite is non existent. Anything to help the HE? Does it get better over time with the medicine? Also, with the tiredness and loss of appetite?

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tgshomes | @tgshomes | Nov 8, 2019
In reply to @racing212 "Im on the waiting list for over a year now. I see the Dr. At mayo..." + (show)
@racing212

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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I am so sorry to hear that. The wait is so long, and it makes life a serious struggle. Do you mind me asking, and I am super sorry if I offend anyone by asking, but what is the cause of your liver to be replaced?

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tgshomes | @tgshomes | Nov 8, 2019
In reply to @rosemarya "@tgshomes, Welcome! I am happy that your dad has you to support him during the transplant..." + (show)
@rosemarya

@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?

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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.

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2 replies
rowdyramsey | @rowdyramsey | Nov 8, 2019
In reply to @tgshomes "Thank you! I am getting used to the chat format, and answered all the recent comments..." + (show)
@tgshomes

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.

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Just wanted to welcome you and I’m sorry to hear of your dads illness. My name is ramona and I had a transplant in July of 2015. I’m on my 4th yr post transplant. I was 47 yrs old. I’m from MD,Baltimore county. My transplant was done at the university of Maryland. I lived in the hospital for almost 2 yrs. If I was released,I would be back in the ER within 12-14 days. I had 2 main problems,fluid and HE. I was about 180 at the most when I got sick. By transplant date I weighed 420lbs. All fluid. Docs had to tap me every 12 days and each time they fulled out 6 2 liter bottles. Image a 2liter bottle of coke. Now at 5 more 2liters to that. Every 2 weeks. I now weigh 150lbs at 5 foot 9. I also lived with HE every single day for almost 2 solid yrs. I had it bad! My ammonia levels were 190-over 200. Comatose levels. I drank lactolose all day and all night long! Every single day for almost 2 yrs. Sorry,I already said that! If you have any questions feel free..... I will try to follow your posts.

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rowdyramsey | @rowdyramsey | Nov 8, 2019
In reply to @gaylea1 "Mind fog or brain fog is an ongoing battle as a symptom prior to transplant. It..." + (show)
@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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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.

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gaylea1 | @gaylea1 | Nov 8, 2019
In reply to @rowdyramsey "I also had bad HE. I had it daily for nearly 2 yrs. I have a..." + (show)
@rowdyramsey

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.

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@rowdyramsey I have to admit that my long term and short term memory have improved since transplant but my immediate short time memory isn't the best. I'm only coming up to 1 year post transplant but there is a definite improvement over the past 4 months. I am sorry to hear that this is an ongoing event for you.

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