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.

JK | @contentandwell | Nov 8, 2019

In reply to @tgshomes "This is helping so much. Did anyone have kidney issues as well? My dad is also..." + (show)

@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

racing212 | @racing212 | Nov 9, 2019

In reply to @racing212 "I'm on both meds and still get have episodes. The. Last one was in August.." + (show)

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

Rosemary, Volunteer Mentor | @rosemarya | Nov 9, 2019

In reply to @racing212 "I'm in hospital now because i had an he episode yesterday at the shop..my forman broight..." + (show)

@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.

JK | @contentandwell | Nov 9, 2019

In reply to @racing212 "I'm in hospital now because i had an he episode yesterday at the shop..my forman broight..." + (show)

@racing212 Kudos to your foreman for knowing enough to bring you in. I am thinking it must not have been that severe an episode if today you are able to be on the computer and communicating. When my episodes were severe enough for me to end up in the hospital it was a couple of days before I was able to communicate with any sense on my iPad, I sometimes couldn't even remember how to get on it!

Take care and get better quickly, it sounds as if this will be a brief stay in the hospital.
JK

mostlybill | @mostlybill | Nov 9, 2019

In reply to @contentandwell "@jeanne5009 hi, Jeanne. I hope you don’t mind my responding to this too. Initially I was..." + (show)

@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

Jump to this post

I take 5mg of prednisone as well, but the side effects are huge for me. The nurse told me I wouldn't notice, but can't sit still, sleep or get physically comfortable--my fingers and toes ache. Hopefully when I see the surgeon on Thursday she will have a better solution.

tgshomes | @tgshomes | Nov 9, 2019

In reply to @rosemarya "Advancing liver disease can affect the kidneys. Sometimes the liver transplant will bring the kidneys back..." + (show)

Thank you guys so much. We are just trying to get some answers here and it’s just one bad situation after the other. I’m hoping they will put him on dialysis and hoping that will help, even if it’s just a little. Seeing him struggle is so heartbreaking. Thank you again to everyone helping, it means a lot and is helping more than you guys know!

flagal22 | @flagal22 | Nov 9, 2019

In reply to @tgshomes "What is a HE Episode?" + (show)

@tgshomes The diagnosis I was given was NASH. I had one severe HE episode 7 months prior to transplant. I woke up one morning very incoherent and combative about getting dressed and going to work that day. I tried to text my work supervisor but could only type nonsense into my cell phone. Luckily my daughter was visiting and called my husband to come home. I was hospitalized for 3 days but do not remember the first 2 days. My ammonia level was too high and affected my brain. They increased my Lactulose and brought the ammonia level down. The downside of the Lactulose was having severe diarrhea and needed to wear Depends. I was no longer allowed to drive. I also noticed short term memory issues. My husband was my primary caregiver and thank goodness he would remember what the medical staff at Mayo in Jacksonville would explain to us before and after the transplant. I was also very fatigued and would fall asleep frequently each day. As the months went on my health declined very quickly with 3 more hospitalizations due to kidney failure. I also started to have ascites and needed a paracentesis once a week to remove between 8 to 9 1/2 liters of fluid. The week prior to my liver transplant I was again released from the hospital and became very weak especially in my legs and was barely eating anything. I also had edema in my legs and needed shoes 2 sizes larger than I normally wore. I was hospitalized again after a week out of the hospital with a MELD of 44, over the 6 to 40 scale that we were told that there was. I did receive the liver transplant that night.
Since my liver transplant 8 months ago, most all of these symptoms went away. I do feel the HE episode and memory issues did create some changes to my brain. I have trouble remembering a word to use in the middle of sentences frequently. It takes me a few seconds and I usually can recall the correct word.
I hope your father receives a liver very soon. You sound like a wonderful son and an asset as a caregiver along with your mother. My children stepped up when we needed their help during my illness and appreciated all they did for us.

racing212 | @racing212 | Nov 9, 2019

In reply to @contentandwell "@racing212 Kudos to your foreman for knowing enough to bring you in. I am thinking it..." + (show)

The Dr. Said my amonia levels have come down a lot since i came in...I've had really bads one's where I'm in hospital 2 weeks in another town with a bigger hospital. And i don't know how to use phone

racing212 | @racing212 | Nov 9, 2019

In reply to @rosemarya "@racing212, I hope and pray that this is a minor episode for you. Hugs to your..." + (show)

I live 3. 5 hours from my transplant center... The Dr's here let him know when I'm in the hospital

gaylea1 | @gaylea1 | Nov 9, 2019

In reply to @racing212 "The Dr. Said my amonia levels have come down a lot since i came in...I've had..." + (show)

@racing212 I'm happy to hear your ammonia levels are down. This is a victory! Be easy on yourself. If you have troubles with the phone ask a nurse for assistance. I was in the hospital for 3 weeks and when i forgot something or needed help I always asked a nurse. They are usually very happy to assist.