Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@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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@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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@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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@jeanne5009 hi, Jeanne. I hope you don’t mind my responding to this too.
Initially I was just on lactulose and did have some episodes still. It is one of the only medications that the patient needs to titrate themselves – take the amount that gives the desired results without overdoing it. After a hospital admission the discharge hospitalist told me to take a HUGE amount of it and it was way too much. My husband had to go out and buy disposable underwear for me. Lactulose upset my stomach a lot so when I saw a hepatologist she switched me to xifaxan. Lactulose had not totally stopped my HE but xifaxan did for almost a year. When I had another HE episode I had to resume taking lactulose along with the xifaxan but I did still have some HE episodes. It was decided that my liver had deteriorated further.

@mostlybill more than likely the prednisone dose will be gradually decreased. I am on 5mg now and do not notice any effects but I am pretty sure that it has contributed to my developing osteoporosis. I’m happy to hear that you are back to a fairly normal routine now.
My BP has also increased but I have read that cirrhosis tends to make BP go down! My PCP wants me on a BP medication.
I think fatigue is pretty common, both before and after transplant. I find that I get tired a lot now too. I don’t sleep well but that’s another issue, but I have assumed that contributes to my fatigue. I used to be a “night-owl” but I am usually in bed now between 11:00 and 12:00. I did not have a drugged feeling but I think fatigue can cause that. On mornings when I have had a severe lack of sleep I feel woozy.

@racing212 not having HE since August is a pretty good amount of time. When I was getting them I woke up every morning praying that I would not have one that day. It’s so incredibly disturbing and I found it depressing too to not have control of my mind.

@tgshomes HE occurs when your liver doesn’t filter out ammonia and it goes to your brain. The effects can be anything from a mild fog, to confusion and being irrational, to coma and even death if severe and not attended to.
As I mentioned above, he does need to titrate the lactulose himself to get the desired results. Also certain foods tend to contribute to it more than others, particularly animal protein. My hepatologist did not recommend not eating any animal protein but she did say to have small portions. I found beef, which I love, to be most apt to bring it on.
I actually weighed my portion of meat and never exceeded 4oz.
I am glad to hear that they feel he will be close to a high enough MELD score that he won’t have to wait too long. It’s such an incredible blessing to be on the other side of transplant and be able to really live again. My cirrhosis was from NASH – non-alcohol steatohepatitis which starts as fatty liver generally.

@rowdyramsey you sure had a tough time before your transplant, with HE and fluid retention. I had edema off and on, but I didn’t have ascites until the last 6 weeks, I gained 35 pounds.
I suspect that, like me, you now feel that every day is a gift. I try to remember that even when I’m having a bad day, because it truly is.
JK

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@tgshomes

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 it's me once again lol. The loss of appetite and tiredness are unfortunately a couple of the symptoms caused by liver disease. I drank Ensure or Boost most of the time. Occassionally I could stomach some scrambled or soft boiled eggs. I tried to eat fresh fruit as often as possible. I also remember drinking lots of water. As for being tired I still am battling fatigue but I know that exercising will help me beat that. My appetite is still poor but I had post transplant problems that held off my appetite for another 7 months. The lactulose and rifaxamin definitely curbed my HE episodes but I was in a constant fog. Conversation was difficult and it was taxing. I preferred to have silence with just my family around me. I didnt participate but liked to listen. Hopefully your Dad will eventually become clearer once the meds start to do their work.

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@rosemarya

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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Thanks for your thoughts. I think the tough part is that we need to come to terms with side effects, they will never go away. As I grow stronger I will be adding yoga to my weekly activities. This was a great help to me with relaxation pre-transplant. Daily walks help as well. I am also eager to resume social activities. See more of friends, grandchildren, and my wife and fewer doctors!

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@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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@tgshomes
As a Newcomer to the world of transplantation, I want you to know that no two transplant patients are alike – before, during, after – transplant. With that in mind, I want to share the link to the Transplant Pages on Mayo Connect. Unlike the discussion groups, the Pages are written by Mayo Staff, and like Discussion Groups, we have the opportunity to join in the discussions there, too! I believe it is a win win situation. I would like to suggest to you that you begin with –
Top Takeaways from "Transplant 101: Preparing for Your Journey" by Mayo Clinic Transplant Staff
https://connect.mayoclinic.org/page/transplant/newsfeed-post/icymi-key-takeaways-from-transplant-101-preparing-for-your-journey/
Here is the link to the Entire Transplant Pages. You can scroll thru the Newsfeed and find articles that are meaningful for you. You might even recognize some faces! https://connect.mayoclinic.org/page/transplant/tab/newsfeed/

Your dad is in good hands at Mayo. I look forward to hearing from you.

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@mostlybill

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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@mostlybill I am definitely not the same person post transplant. As you mentioned a myriad of small things add up to different obstacles in every day life. I also seem to be living in a "drugged" state. My tastes for certain foods has changed dramatically. I live day to day not thinking much about tomorrow. I am not depressed but seem to be melancholy. I cant think that my experience is due to medication as I only take 1mg tacrolimus every 12 hours. I am optimistic though that as time goes on I will begin to bounce back. Right now I'm just grateful that I'm healthy and still here to enjoy life with my family.

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@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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@mostlybill I was taken off prednisone and cellcept months after transplant . I had very bad tremors and shaking and once off those meds i was fine.

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@contentandwell

@jeanne5009 hi, Jeanne. I hope you don’t mind my responding to this too.
Initially I was just on lactulose and did have some episodes still. It is one of the only medications that the patient needs to titrate themselves – take the amount that gives the desired results without overdoing it. After a hospital admission the discharge hospitalist told me to take a HUGE amount of it and it was way too much. My husband had to go out and buy disposable underwear for me. Lactulose upset my stomach a lot so when I saw a hepatologist she switched me to xifaxan. Lactulose had not totally stopped my HE but xifaxan did for almost a year. When I had another HE episode I had to resume taking lactulose along with the xifaxan but I did still have some HE episodes. It was decided that my liver had deteriorated further.

@mostlybill more than likely the prednisone dose will be gradually decreased. I am on 5mg now and do not notice any effects but I am pretty sure that it has contributed to my developing osteoporosis. I’m happy to hear that you are back to a fairly normal routine now.
My BP has also increased but I have read that cirrhosis tends to make BP go down! My PCP wants me on a BP medication.
I think fatigue is pretty common, both before and after transplant. I find that I get tired a lot now too. I don’t sleep well but that’s another issue, but I have assumed that contributes to my fatigue. I used to be a “night-owl” but I am usually in bed now between 11:00 and 12:00. I did not have a drugged feeling but I think fatigue can cause that. On mornings when I have had a severe lack of sleep I feel woozy.

@racing212 not having HE since August is a pretty good amount of time. When I was getting them I woke up every morning praying that I would not have one that day. It’s so incredibly disturbing and I found it depressing too to not have control of my mind.

@tgshomes HE occurs when your liver doesn’t filter out ammonia and it goes to your brain. The effects can be anything from a mild fog, to confusion and being irrational, to coma and even death if severe and not attended to.
As I mentioned above, he does need to titrate the lactulose himself to get the desired results. Also certain foods tend to contribute to it more than others, particularly animal protein. My hepatologist did not recommend not eating any animal protein but she did say to have small portions. I found beef, which I love, to be most apt to bring it on.
I actually weighed my portion of meat and never exceeded 4oz.
I am glad to hear that they feel he will be close to a high enough MELD score that he won’t have to wait too long. It’s such an incredible blessing to be on the other side of transplant and be able to really live again. My cirrhosis was from NASH – non-alcohol steatohepatitis which starts as fatty liver generally.

@rowdyramsey you sure had a tough time before your transplant, with HE and fluid retention. I had edema off and on, but I didn’t have ascites until the last 6 weeks, I gained 35 pounds.
I suspect that, like me, you now feel that every day is a gift. I try to remember that even when I’m having a bad day, because it truly is.
JK

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This is helping so much. Did anyone have kidney issues as well? My dad is also battling kidney failure and was just hospitalized again this afternoon. He doesn’t know the year, the president, only who my mom and I are. Which I am thankful for. This is so incredible hard for our family and we are not giving up.

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@tgshomes

This is helping so much. Did anyone have kidney issues as well? My dad is also battling kidney failure and was just hospitalized again this afternoon. He doesn’t know the year, the president, only who my mom and I are. Which I am thankful for. This is so incredible hard for our family and we are not giving up.

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Advancing liver disease can affect the kidneys. Sometimes the liver transplant will bring the kidneys back to health. Sometimes patients require dialysis until liver transplant.
Never give up! My doctors and my family did not give up on me. I had a liver and kidney transplant 10 years ago at age 60.
Sending positive thoughts.

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@tgshomes

This is helping so much. Did anyone have kidney issues as well? My dad is also battling kidney failure and was just hospitalized again this afternoon. He doesn’t know the year, the president, only who my mom and I are. Which I am thankful for. This is so incredible hard for our family and we are not giving up.

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@tgshomes I'm sorry to hear your Dad is in hospital. I personally never had kidney issues but there are others here who can address this better. Be patient with your Dad even though it is scary for you. Being in his place I remember feeling extremely frustrated not being able to answer the simplest questions correctly. I had nightmares about this. Eventually things will come back to him but maybe not quickly. Just keep giving him the correct answer. Patience is the key right now.

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@gaylea1

@mostlybill I am definitely not the same person post transplant. As you mentioned a myriad of small things add up to different obstacles in every day life. I also seem to be living in a "drugged" state. My tastes for certain foods has changed dramatically. I live day to day not thinking much about tomorrow. I am not depressed but seem to be melancholy. I cant think that my experience is due to medication as I only take 1mg tacrolimus every 12 hours. I am optimistic though that as time goes on I will begin to bounce back. Right now I'm just grateful that I'm healthy and still here to enjoy life with my family.

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I understand melancholy. I have been pushing hard through the fog to reclaim myself. I worry about kidney health and blood pressure. It seems to me that the stronger I get physically, the more mental strength I gain. Someone suggested that I challenge my self by adding one new activity every day–simple things like sweeping the floor, getting the mail, cooking. Now I can walk 2 miles carrying 5lbs in each hand and not pant going up the hills. It is tedious, rebuilding what you had only weeks or months ago, but for my mental state it is necessary. It is great that you are optimistic, that takes you far. Best wishes.

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@tgshomes

This is helping so much. Did anyone have kidney issues as well? My dad is also battling kidney failure and was just hospitalized again this afternoon. He doesn’t know the year, the president, only who my mom and I are. Which I am thankful for. This is so incredible hard for our family and we are not giving up.

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@tgshomes I’m sorry your dad is in the hospital again.
I did recognize people I knew, but I didn’t know the year, who was president and a slew of other things. As you may start noticing, HE symptoms tend to run the gamut. I think everyone has confusion but many other symptoms vary. I am a very non-confrontational, non-aggressive person, but I tried to hit my husband during one episode. That was before I had a diagnosis so we didn’t know what was causing my behavior. My daughter (she’s an adult) was present and horrified. I think for a long time after that she was actually upset with me.

@gaylea1 I do have some short-term memory problems but I assumed that was due to getting older. Interesting to think it could be related to past HE or perhaps to medications.
JK

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@racing212

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

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I'm in hospital now because i had an he episode yesterday at the shop..my forman broight me in

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@racing212

I'm in hospital now because i had an he episode yesterday at the shop..my forman broight me in

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@racing212, I hope and pray that this is a minor episode for you. Hugs to your foreman for his quick action to get you in for treatment.
I don't know whether you live near your transplant center for treatment, but if not, I hope that they are involved and will be able to figure out what is causing these episodes.
I have not had any HE episodes so I can only try to imagine what you are going thru.
Hugs.

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