Liver transplant - Let's support each other

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.

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?

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/

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.

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.

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.

@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

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.

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.

@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.