u/Fit_Restaurant_3832

Title says it all. I’m guessing the answer is a big fat negative! Seems anything that would help us sleep exacerbates HE.

Is this too banned?

Has anyone talked to their hep about this Promethazine. I suspect the answer is “no!” Anyway just putting it out there. It’s a much stronger antihistamine than hydroxyzine. Excellent to help fall asleep and relieve allergies. I can now pet my pups with no break outs. I take 25-50 mg with night meds. I’ve not seen anything on Reddit about it helping cirrhotic patients.

Im so tired of worrying about all this liver shit. It has sucked the joy and peace out of my life. I just wanna go crazy and aggressively fast and workout for hours. I mean if fats the problem the fuck it! I’ll borderline starve. The wasting will set in, maybe then I’ll be able to sleep. I’m tired of being tired. Benzos were the best thing that ever happened to me. It calmed me and I was finally able to get some fucking SLEEP!! If I die from HE then so be it. I hope my hep doesn’t demand I stop Ativan. I’ll just drink lactulose until I’m pooping every 2 minutes. At least I’ll be calm and not be holding a razor to my jugular. Don’t these doctors understand a sleep deprived mind is a recipe for a disaster. THIS IS BULLSHIT! I’m tired of folks dancing around this. INSOMNIA is as deadly as HE when the mind and body are no longer able to function. I’m sick of the judgmental doctors, sitting behind a big desks with zero idea of what this is doing to their patients!!! More research needs to be done on this and the lack of quality of life in cirrhotic patients. I worked decades in healthcare. I was aloof to the pain and struggle. Who’ll advocate for us if we don’t start the fire?

In 2014 during sleeve sx my liver was noted to “appear cirrhotic”. The surgeon took a shitty biopsy that read F2 but they were sure it was way worse. I having have illness anxiety since my mid twenties completely broke. I refused another biopsy until I’d lost weight. Do 2 yrs later 90 lbs lost, new biopsy F3. I was given zero hope. The hep looked me straight in the eye and said “you got 10 years, after that, you’ll start seeing signs.” He didn’t even bother explaining comp and decomp. I’m 48 now, I was just 36 then. And the more I did for hope, the more horrific it gets Well it’s be 10 yrs. The other day I urinated what appeared to be pure bilirubin, in the well of the toilet was blacker than night. Of course pale stools followed. Then, this girl who cuts my dads hair said her mom suffered horribly before she succumbed to MASH cirrhosis. I began to read the suffering is up there with bone cancer.

Last elastography showed F3. I started Rezdiffra but quit after a few days. In my mind, I’m already cirrhotic going into decomp any sec now. another symptom to add RLS. I know they’re worse things but this shit is horrible even with meds. My med list is a HE recipe. But yet, I’m TERRIFIED. Like wtf!! I actually read even high doses of melatonin can cause HE. I advocate for quality over quantity at this point. No I’m not officially cirrhosis but my symptoms are telling. So just how the hell are any of us with insomnia related cirrhosis and the knowledge of how we suffer unless we get the ever elusive transplant suppose to have a decent nights sleep??? When you ho for a transplant it’s like you better damn sure be practically perfect, on zero meds if possible?? WTF!! This disease offers little room for those meds that other folks get when they’re afraid of a terminal illness. I guess this falls under life isn’t fair. But it pisses me off that hospices can’t manage a peaceful death for this! It’s here are ways to lean oneself into passing from HE. Yeah we may get loco and gave personality changes but eventually we fall into a coma. I wanna just give up. Take my HE inducing meds and go to sleep. But there are those I wanna fight for, I’m frantically trying ways to address anxiety and panic but at some point, I have to rest and my thoughts take over.

Two days ago my husband as be offered a portion of his liver. Nothing more precious could’ve been offered me. Hes a beautiful soul. Of course we don’t even know if we’re a match. I wanna grow old with him, I never wanna see him cry. So for now I’m working my ass off to lose more weight. Sometimes I think I should go into an intense inpatient rehab to get off my Ativan, but it’s what allows me to sleep for now. I hate myself, f—king pill is worth more than my husband? . I’ll never be a candidate because of that. Finally, not to get religious on yall but we are talking terminal illness here. One day It hit me, even Jesus was afraid before he’d be captured and tortured from sun up to sun down. He prayed until blood and water poured out of His pores. And said let this cup pass from me. So are we not to fear? Are we to put on a brave facade at every transplant center sit down. Then leave and crumble when there’s no one is around. This is a special kind of torture, not just the body but the mind. I don’t believe in medical assisted suicide because it’s a sin in my book. But there the choice to stop eating and drinking, is that suicide? My mother did that before I put her on hospice. In one year I’ve lost my parents, save my husband they were my rocks. I envy their passing, it was nothing compared to this.

Well now that I’ve finished this very blunt rant, I’m hoping to get some advice on dying, living, hope, overcoming anxiety and fear. For the past 12 years, hopelessness and despair have been my constant companions. Learning to trust in God (or whatever divine being you choose) is the hardest thing, at least for me.