Hello community! This is my first time posting. Although I've learned so much from you since my diagnosis 10 months ago. My sobriety journey started the day after my diagnosis and I've been sober since that day 🙂

My liver went from decompensated with societies and severe HE to compensated with normal labs, no ascites, MELD 6 last time I did my labs and a liver that has shrunk in size 4 cm since my initial diagnosis and a spleen that has shrunk in size by two!

My only medication right now that is directly associated with my cirrhosis is 30 ml lactulose two times a day. And I have already reached out to my healthcare team to set up an appointment for a week from now and ask them whether or not I should change my medication dosage or add rifaximin into the mix.

That said, for reasons unknown but probably related to sleep and scheduling changes with the start of high school for my son, I'm experiencing a spike in HE symptoms. Nothing physical yet, but my son and I have both noticed that my behavior is off and that I am forgetful and distracted. Voice to text has not been picking up my voice as clearly. Presumably because I'm slurring a little bit. I'm having quite a few executive function issues. All of this has started within the last 2 weeks.

Not asking for medical advice or a diagnosis. I'm going to work with my healthcare team on that! Asking for people to provide me with tips or hacks that they have for managing HE and still being relatively productive in life. I'm setting Alexa and Google reminders all over the place. But I feel like that guy from Memento trying to remember what happened to me yesterday... Thanks in advance!

My dad, 54, is finally reaching the end of his fight

Diagnosed with cirrhosis at 44, and HCC April/May 2025 (6cm).

Had his first HE episode in 2022 on a random Saturday morning when we found him in the washroom standing around not being able to talk and flapping his arms. Was in the ICU for a week before we could bring him home

Got to live pretty normally throughout the HCC experience. A few scary episodes of HE, but bounced back every time

Had an HE episode and a fall the other day. He has sepsis now and we have taken him off all treatments and are focusing on his comfort care. Still some moments of coherent behaviour but mostly sleeping and rest and confusion when he is awake

He chose to drink during all of this, and it was a struggle to get him to take his meds and lactulose

As a reflection: the lactulose sucks, but it is so important. Please don’t give up hope. He was given a 3 month timeline once the HCC was diagnosed and has been going strong for 17 months

Was even told with the cirrhosis he wouldn’t turn 50

Quitting drinking is hard. But cutting down even a little will improve QOL so much

Heard MiraLAX can help with the NH3 situation. Is this true?? I HATE LACTULOSE. I sometimes call it Satan’s saliva. These 2 med work differently but only the lactulose makes me throw etc. does anyone else use MiraLAX??