Hey. Lost post sorry! If this makes no sense to you, dont worry, this disease is confusing enough.
I have cirrhosis from alcoholism but dont drink anymore and never will. Found unconscious on 9th jan and apparently had liver failure, as well as alcoholis hepatitis. Went though DTs, had hepatic encephalopathy, was put on lorazepam IV for alcohol withdrawal. I swear i dont remember how i get there or how long it took to realise where i was. I had recurring psychotic dreams I couldn’t escape, didn’t know what was real, thought everyone was against me, thought I was taken hostage overseas. Dreamt of Jack Torrance in the Shining being both myself and a third person. I remember seeing nurses and drs in these “dreams” and they were conspiring against me, and even wanted to apparently destroy my brain stem to make me a sponge. I saw family and friends try to “save” me in these psychosis episodes/dreams/DTs and they’d get mutilated or something if I didn’t beg them to leave and save themselves.
I also have portal hypertension, given carvidol 12.5mg. I got out on the 25th Jan, had heatstroke then a seizure and ended up back in for 2 days, they daid no more damage was done but still. Also has one kidney from my left kidney being removed at 17. (Unrelated and idiopathic)
So my meld since Jan had sat at about 27, not drinking anymore, eating super well and healthy, go to all appts, vitamins, rifaximin, lactulose, and I don’t get it, this is so confusing. My bilirubin in Jan was about 55, now after being healthy and sober it’s went up to 400 last month and is now floating around 350.
However my haemoglobin level is around 70-80, meant to be 125-175 umol. Low platelets. they think I have macrocytic anemia, but I definitely have some type of aenemia. Electrolytes look good so far, anion gap and bicarb are off by one point. lactate dehydrogenase, liver enzymes etc are high but not as high as they were in Jan. Basically I’m trying to say my other liver levels seem to be somewhat slightly improving but my bilirubin has climbed and I’m sick of looking so yellow. I apparently have developed a shunt or something around my liver to act as a pressure release which according to my GP, is a reason why I don’t have fluid build up (yet)…, but it also means there’s a bigger backflow of toxins that flows into the liver meaning higher chance of Hepatic encephalopathy. I am very wary of that and take my rifaximin and lactulose as required. My kidney and other organs are all normal they say.
I however am struggling very hard emotionally and mentally like it’s an endless uphill battle and there’s no mental supports available for me as of yet. This is pure torment. I don’t feel pain yet, so that’ll be fun when it happens.
https://paypal.me/cirrhosiskid?country.x=AU&locale.x=en_AU
i was a huge drinker, kept it under wraps for years. Trying to care for my ill mother by myself. It’s just such a long and lonely story. No alcohol at all now, I have nightmares about it. I never ever do this but I am desperate and don’t know where to put this…
I have tried asking on Facebook and my family members, which I don’t have many of about a fund-raiser for my cirrhosis diagnosis as I handle chronic health management for the remainder of my life. Even 5 cents helps. But no one has helped. If I could work I would. I hate asking and would never expect anyone to help out. I am struggling with government payments, cannot work at the moment, i do paid surveys for cash. I am still my mums carer, she is getting worse with her brain tumour and her ataxia. I never learnt how to be there for me. I am doing all I can, am on lactulose, rifaximin, carvidol, many vitamins, blood tests weekly for anemia and I need a very high protein, low sodium fresh diet. I once again understand money isn’t something to just ask for, and I do not expect a thing. Just thought I would try all the help I can. I hope everyone else is doing okay today. I really just want to have a weekend or a few days in a local hotel room by myself, I don’t need anything too fancy…
https://paypal.me/cirrhosiskid?country.x=AU&locale.x=en_AU