Liver transplant - Let's support each other

@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

@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.

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.

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.

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.

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?

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?

What is a HE Episode?

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/

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