Liver transplant - Let's support each other

@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.

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!

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.

@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

@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.

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

@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

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.

@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.

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.