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Liver transplant - Let's support each other
Transplants | Last Active: 2 days ago | Replies (1617)Comment receiving replies
@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
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@contentandwell my HE episode occurred shortly after diagnosis I don’t remember the dosage but took it 4 times a day. A month and a half later I was being evaluated at Mayo they added xifaxin and had me titrate the lactulose but I still had issues. I met 2 patients at Mayo that had MELDs in the mid 40’s before it happened to me. I read an article about increasing the MELD scale because more people are having scores above 40. I do not remember where I read this, sorry. Having only one HE episode but noticed short term memory problems before transplant too. My local Gastroenterologist asked me in September if I suffered brain damage. I responded “no” but since then am starting to believe my short term memory issues may be brain damage.
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@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.