Well, just got put on inactive list for transplant. They said i have had no change in my MELD score for a year (it is 12) so they would not transplant me even if the perfect liver showed up. Risk/Benefit thingy. Still feel tired and achy. HATE Lactulose, wish I could stop taking it now that I am not on the active list. But I guess my liver still is not processing ammonia properly. Anyway, thats my update.
I am sitting here awake at 3:45am, recovering still from the sleeplessness that comes with my high ammonia bouts.... I HATE LACTULOSE, TOO!!!!! I went into the hospital with my very 1st "high" ammonia level of 77 in the end of Sept., '11 - I couldn't find my words, write, talk in any form of a sentence, figure out how to cut chicken breast, read... I truly thought I had a brain tumor! I got to the hospital, (yep I drove myself and everyone survived!!), checked myself into the ER, and had one hell of a jerk doctor. He laughed at me when I couldn't say anything but "It just doesn't work...", then I couldn't even give him an active drug list. The first day there, I was sure I wasn't going to come out of it. I wrote a short, make shift will to take care of my kids and family when I felt I could. Once they ct'ed my head to be sure of no injuries or tumors, I was admitted, and they started pounding the lactulose. Hard to believe that is the ONLY thing that rids you of ammonia! After a day, I could talk better but not perfect, and still couldn't sleep - when I did, I had the weirdest dreams ever in my 40 years. After 3 days and 2 nights, I came back home feeling like I was on the mend... Afterwards, I took the lactulose until I felt better, and if I started feeling funny I would start again. This time, the decline occured so rapidly that I passed out in my car. My Mother noticed me in her driveway 1/2 hour later, and thought I was dead. I got inside her house, laid down, and moaned for 3 hours, having fever dreams and the cold that would not go away... UNTIL... the sickness began. I started dosing on the lactulose again, got much better, and learned that I CANNOT go without it, no matter how gross it it!
My MELD score after 10 years is still below 15, though I have super varices, the ammonia levels, portal vein thrombosis, and sleep reversal. I am not on the list, have recently lost my doctor, and am watching my Mother and Sister battle ovarian stage 3C cancer... Not to mention the monetary woes!! I will say one thing, though - I will NEVER, EVER go off of the lactulose again!!!
Hang in there, see your strength in who you are, and know that things can only get better!!
Much Love and Light ~
~Pandora~
Thank you pandora for your comments. I have wondered whether some of my symptoms were in my imagination, since my levels are supposedly "low" enough not to be transplant-worthy. I went through the gibberish talk, even emailed a few people with garbled silly emails, I thought i was fine of course. Once they cleared my liver I steadily got my wits back after about a year. For a while i could not add more that two numbers in my head, which sucked for a manager of a coin shop. anyways, good luck with your battle too.
AMMONIA??? Is that what makes us brain dead? If I was embarrassed by it, I'd never leave the house. I know why people hide but I'm glad I don't. I still can't work. I was a COST ACCOUNTANT of all things. Talk about adding 2 numbers together. WOW! Isn't it great to find out we are normal. I find it very hard to explain. People who know me and have always counted on me just don't get it.
Mona
Yeah, I kept telling people it was like overdosing on antihistamines