The major issue that I experienced was having high ammonia levels. I had to stop driving because the levels made me feel and appear intoxicated.

I am a recent liver transplant patient ( March 10,2019 . You could experience a lot of things that you might think are not related to liver disease but are, like severe itching , rashes , weight loss just to name a few. My best advice to tell you is do what the doc tells you. Buy into the process it will be hard somedays, but stay the course, stay active as I worked for 4 hours on the day they wanted me to go to the hospital. Most of all stay positive that you will be blessed with a transplant . Even if you don’t get one at least your loved ones have good memories. I wish everyone could get the gift of life as I did. Good luck with the journey. Also if you can research life after transplant some as that ride is awesome and scary all in one.

What do u mean by”symptoms right before surgery?” Depends on how sick u are. But you have no increase in symptoms before surgery. Maybe just real nervous. I had a transplant 4 years ago. I know what u r going through! Are u on the transplant list? Do uspend a lot of time in the hospital? Just trying to figure out how far u are along! Know what I mean!?

I am a 17 year liver transplant survivor. I was very blessed. My transplant was much easier then getting to the transplant. Very ill prior to transplant. Had been sick for 4 years prior to my transplant. No pain, but had high ammonia levels and went into short term comas many times before transplant. After transplant, was very weak. I really never got my strength back. However, I had no rejection problems. Have been able to be here for my 2 grandchildren and 4 great grandchildren, what a blessing. This last couple of years have been a bit tough. I have worked full time for the last 16 years. I developed Afib, ended up having an ablation, which went good. Was put on blood thinner (Eliquis, had a GI bleed. Lost 40 lbs over about a year and have hyperthyroidism. Started thyroid meds, which has shaken up my afib. Finally after 16 years on prograf, finally went to kidney doctor and found out I have 50% kidney function. I am now 63 years, I was blessed with many good years. With age I think you just start having more medical problems. I am hoping that I start gaining weight ( I weigh 88lbs now. But looking forward to improving with new meds. Just get a very good set of doctors, Gastro, kidney and Heart doctors to keep an eye on you. Don’t just trust a family doctor or an internist. Mine didn’t even want to refer me to a kidney doctor. Said nothing looked that bad and he probably wouldn’t take me. He told me I should have came a few years earlier.

The symptoms can be quite varied. Personally, my biggest issue was encephalopathy. It can your whole mental status. But others include the yellow skin which can lead to a lot of itching. Esaphogeal varices and bleeding can be another problem. You need to be watchful of these. Most of the other symptoms are pretty invisable.

I just finished my transplant workup. Was in very bad shape this summer. Weighed 79 pounds and went into the hospital. Was having paracentesis every 10 days. Finally got a drain put in to drain at home. Then the acites just stopped all of a sudden. I chalk it up to lots of prayer. Nothing else had changed, except I was dehydrated and the Dr lowered my dose of fluid medicine. Went to Mayo in Jacksonville and found out MELD score is 6. Probably to early for transplant. Will find out next week.

Hi - Rick - age 49 - MELD score = 19 - alcohol abstinent - major co-morbidity = Type 2 Diabetes. Transplant is not ruled out. I just work the plan as the doc said, as others have said here.

My symptoms, which have progressed over the last 6-9 months:
-- itching. Big time. I'm not jaundiced but the itching can be intolerable unless I'm actively moisturizing
If I scratch myself in my sleep (see: itching) the odds are better than average I'll end up with some sort of skin breakage or rash, which leads us to...

-- platelet anemia (Thrombocytopenia ) = difficulty clotting.
This was the first symptom I had that got me into the hospital, actually - I had a minor nosebleed that absolutely would not stop. This is a function of the enlarged spleen that goes hand-in-hand with my cirrhosis

-- red cell anemia - this nowhere near critical, but this and the Thrombocytopenia are watched closely like everything else. I've had transfusions but they're not routine.

-- infections are more frequent than the Old Normal. These could be skin breaks, or could be due the stuff going on in the blood/spleen, or both or other

-- ammonia levels are rising... leading to...

These physical things are a pain in the you know what, but they aren't what's really rocking my world right now except in terms of how they drive encephalopathy.

Someone else mentioned they couldn't drive a car when it was bad. That sounds about right re: my case.

Extreme difficult focusing, falling asleep, (ha) getting up, the usual. Lethargy.

Over the holidays I pretty much lost it and wound up in a behavioral health unit getting my psych meds adjusted under observation.

It was then someone pointed out that depression was fairly common / can worsen with encephalopathy.

I do my best to combat the symptoms to take all my meds, drink the prescribed amount of water ( which is less than I want), avoid artificial sweeteners (the old bad ones; Stevia is ok), radically limit carbs and sodium, minimize protein as best I can.

I got to know that my liver had a problem accidentally.
When I had visited my primary, after a blood work, they found that my white bloods are at a questionable level. He requested me to go the Emergency Dept. and have it taken care. After procedure, I was requested to stay in the hospital for further review, which I felt was unusual.
After the hospital stay for 4 days, I was informed that I have cirrhosis in the liver and the only option is to have it transplanted.
This started the whole process and the hospital oncologist called several hospitals to find out who could work on my liver problem. The University of Virginia Transplant called, albeit it was a 100 miles one way from place. After a whole year of testing and checking on my health conditions etc. I was placed on the waiting list and my MELD score was very low. The ranges from 6 to 40 based on the lab test. The higher the number, one is more likely to receive a liver from a deceased donor or when an organ becomes available. A living person could also donate part of their liver to the patient, since the liver is the only organ which grows to its full size within a month.
I had a full time job and the nature of my job is I do not have to visit any office building and I could work remotely.
During the process one has to understand that there a so many test needs to be conducted and the hepetologists prescribe medications accordingly. Meanwhile, the patient ages very slowly, the face becomes dull, and also start the body starts itching and there will be ascites will build up in your stomach. One will be gaining weight and has to go to the hospital to have the fluid drained from the body. It is really messy process. Please note until the MELD score gets to 18 to 25 you will have no chance of getting a liver. It is a catch 22 situation. One has to get really sick to get a liver and there is no guarantee once you get real sick, that there will be a liver waiting for you. Once one is really ill, the survival rate at that point onwards is around 3 months.
My recommendation, just take one day at a time. If you do have real estate properties, auto, Bank account please transfer them to a Living Trust. I was continuously working during this time.
Also, after 9 months or so, my face was changing and I could feel, it’s time to go. I did not feel bad at this point because I did this to myself. I used to party a lot and drink as much as I can and ended up in trouble. I cannot blame this on anyone one except me. People around me were really helpful without any judgment.
For my luck, the hospital called me on a December day that they found a match. Just could not believe it. Thought they got the wrong person. The important fact someone who wants to give his/her part of the liver to someone to live. The transplant surgery took place on the 17th of January 2019 and it is almost 4 years and 2 months. I am still around.
Later on the Hospital set up a meeting with the donor, who was anonymous in the beginning of the process. I just fell of my chair when I met my donor. She was a very young girl aged 23. Originally from Allentown.PA was working in Lynchburg VA at the Liberty U.
I am an emigrant to the USA and most people say USA has problems. Wrong. The best and most generous people are here right in the USA. I am in contact with her on a regular basis and also have met her family in PA. I consider myself as a lottery winner. Have Faith in yourself and the rest is up to God who helps people all the time.
My medications are for life and I take approximately 12 tablets in the morning and 6 in the evening. Please ensure you have good insurance since it may cost around easily a million dollars. That is the story in a nutshell. I still take one day at a time. One will never know what’s in store for tomorrow.

@lmctif I had similar symptoms that some others listed (high ammonia levels) but one interesting symptom was a high fever and body chills.