Liver transplant - Let's support each other

@rowdy Ramsey I am very sorry that HE may have given you permanent brain damage. I have heard that can happen but if it did for me it was fairly minor - some forgetfulness. Is there any therapy that might help with it? There is so much they can do these days and they are always finding new therapies. Maybe a really good neurologist could help.

You have mentioned having a case pending. Who would you be suing? It sounds as if all that could be done, was. You were taking large amounts of lactulose to try to minimize HE, and being drained of fluid regularly. I did not have significant fluid build-up until shortly before my transplant, I did have edema when I traveled, but never needed to have fluid drained. I was on two diuretics.
JK

I have also had a problem withHE and believe I’ve suffered permanent brain damage from it. Just wanted to say that I have enjoyed reading your posts and responses. I can relate oh so well! Thanks for sharing!

Thanks, @gaylea1 every time I think about those days I shudder. It really was a nightmare and going almost a year and a half not knowing what was wrong with me is insane, I had many typical symptoms such as low platelets and shaky hands. As I have mentioned before, the PCP I did have called me, on the phone, and very simply stated that she thought I had Alzheimer’s! This was after one HE! She was the first doctor who referred me to a neurologist, but I stayed with him, after I quickly changed PCPs. The neurologist was stunned at that suggestion too, after one episode of confusion, and did a little informal testing, and although he didn’t know yet what was wrong he did know it was not Alzheimer’s. He was the one who figured it was a liver problem.

When I was hospitalized they didn’t know yet what was wrong and the treatment was horrible. It wasn’t much better after my diagnosis either, except for a small handful of nurses.

That it took so long to diagnose me is ridiculous. Granted, I never got jaundiced, and my ALT and AST were not horrible, but I have read that is not uncommon. The doctor I switched to, who is still my PCP due to not being able to find a decent one taking new patients, said when I confronted him about not diagnosing me, that he was relying on what previous doctors had diagnosed - shaky hands as essential tremor, low platelets as ITP (immune thrombocytopenia). My other symptoms were not addressed. I’ve had it in my mind that I will change doctors but have been dragging my feet. Being reminded of all of this, along with him dropping the ball on my osteopenia that is now rather advanced osteoporosis, has given me more resolve to make a change after the holidays. The one thing making that decision difficult is that I have a good communication with my PCP, and I like him!
JK

@contentandwell I am so sorry you had such bad experiences. My first, and worst HE episode is what led me to diagnosis. My husband came home early from work to find me incoherent. He insisted I go to the hospital but I thought I was fine. He called my daughter and with much resistance on my part they called an ambulance. I don't recall going to the hospital or much of anything for 3 weeks. My son flew in from Ottawa as they thought I might not make it. The nurses were kind and concerned. I had several nurses check in on me as their shifts changed and they would visit with me (so I'm told). I didn't recognize many but they all knew me. I was indeed fortunate. I don't know if your hospitals have this procedure but when my nurses changed they had a board where they would write their name and the date. My family were super impressed with all the nurses and aides.

@flagal22 they didn’t tell you to titrate the lactulose yourself to achieve the desired effects? I generally took about 30 - 35 ml, 3 times a day but if that wasn’t doing it increased it to 40 or so. When a hospitalist put me on over 60 ml, 4 times a day, all heck broke loose and that was when my husband had to get disposable underwear for me. When I decreased it things normalized with controllable loose bowel movements, 3 or 4 times a day.
Your MELD is one of the highest I’ve heard of. You must have really felt miserable. The last time before transplant that mine had been calculated was a few weeks before. Things were going downhill fast so I wonder if it was calculated again when I went in for the transplant.
I didn’t buy new shoes, I had some Ugg slip on slippers and they were the only thing I could get on my feet.
These conversations make me wonder if the little memory problems I have could be due to my HE episodes, not simply old-age.

@racing212 ammonia levels can really fluctuate greatly which is why testing ammonia randomly is not a good indication of an impending HE episode. I was discharged from the hospital after an HE episode but was back in a day and a half later, ammonia up again.

@gaylea1 when I had HE episodes I went to my local hospital. I was very uncontrollable so my husband needed to get me somewhere fast. My local hospital apparently knew nothing about HE, and initially I had not even been diagnosed yet, so I got no sympathy and little help from most of the nurses. To them I was a problem patient. 😥. I hope I NEVER have to be in that hospital again, it would give me nightmares.
JK

@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 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

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, 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.

@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