Last cirrhosis diagnosis has floored me into a deep dark pit
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Diagnosed with decompensated cirrhosis 5 years ago next month, after 4 months denial of looking 8 months pregnant.
Had Hep C for maybe 30 or so years, genome 1, hadn't heard of new treatments till way too late.
Fainted in street, taken to hospital where 8 litres of fluid tapped - often think of the analogy of carting around 4 x 2 litre bottles of milk! Received 2 intravenous bags of albumin.
Since then, everything seems to hit me. 5 episodes of bleeding varices banding, UTIs, ingrown toenail surgery, everything seemed to be plotting to stop Hep C treatment.
Finally, over a year after my faint, started Hep C treatment, only to end up in hospital with pneumonia. I did not miss a single pill though, so Hep C clear over 3 years.
My latest scan showed virtually no ascites and blood tests as good as they have ever been.
I've had surgery twice a year apart for umbilical hernias caused by ascites. First time couldn't pee for 2 months without a catheter and was worried for my kidneys.
The constant crap - wicked beyond belief cramps that often wake me, in sides of lower legs, calves, feet, hands, groin - and best of all, quite often several at once!
The maddening itch that keeps me up all night, I've scratched my legs so hard I've drawn blood and had scarring for months.
The come and go incontinence, the hideous spider veins all over my legs from knees down from portal hypertension, having to go from dress girl to pants girl, in the heat and humidity of Queensland.
The hideous muscle wasting which has aged my arms 20 years and my refusal to wear anything less than 3/4 sleeves. Feeling hideous and full of self loathing. The horrible thought of how ugly a cirrhotic liver looks and to know I'm walking round with that inside me.
The insomnia, tiredness, hideous nightmares, the time I was frozen with fear, convinced there were things that wished me harm in my bedroom in the middle of the night, unable to move or scream.
Told I needed to reduce my stress levels - ha! that's a good one, then on top of it all breaking my left wrist earlier this year night, when I am very left hand dominant, necessitating having plate and screws inserted, then 6 weeks later it getting badly infected, whereupon told I'd probably need plate and screw removed, gunk scraped out and all started over. I was frantic with anguish that day, luckily they put me on intravenous antibiotics.
The utter loneliness of having no-one to talk to about it all, though I did avail myself of the 12 psychologist appointments offered.
Now I've found that I have candida glabrata - oh joy! They have just repeated test to make sure before deciding on a course of treatment. 6 hours in ER the other night and they did a urine scan that showed I had about 1 ml less than a litre of urine in my bladder.
So now the terrible urge to pee that comes on extremely quickly, going at least a dozen times a day and maybe 20 ml coming out.
Finally this is the straw that broke the camel's back. Have read up of the revolting options, an infection notoriously hard to treat, which would have to be half dosage or something to not kill my liver, which completely kills gut bacteria, so anything that comes along gets free entry.
Feel like I have been having myself on, thinking a good diet, apple cider remedies, exercise, deep breathing, all of it, is all for nothing. Very much now feeling like refusing these vile drugs to rid myself of the glabrata, and departing this planet, really, truly had enough.
To anyone who bothers to read this without falling into a coma, I thank you, felt the need to purge myself of my black dog nipping at my heels relentlessly.
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