B. The Early Days

beginningB. The Early Days

When I started out on this journey through the land of cirrhosis in November 2008 I was terrified. Terrified of the unknown, terrified of the consequences and terrified because I didn’t know which way to turn, what questions to ask or where this was all leading me. Then the symptoms started in earnest, a visit to my local doctor about constant diarrhea had raised the flags about the condition of my liver but no one ever warned me of what was about to happen to me.

There was nowhere to go and ask the question, ‘ok, I have cirrhosis, now what is going to happen to me?’ My then GI doctor would shrug it of with a “well, you’ve killed your liver and there is no treatment”.

As time went on so my symptoms changed. I had ascites, I had portal hypertension, I had diarrhea that defied description in its intensity. I had the stomach pains, the body aches the tiredness and the insomnia. It seemed like every new day would bring on yet another new symptom and sometimes, if I was lucky, another would go away.

My taste buds changed, what used to taste good one week tasted foul the next. I have never ever vomited so much in my life. If food would stay down for 20 minutes that was a good thing. My appetite went away, but even if I was hungry I was scared to eat, the vomiting was so awful. I had hemorrhoids which caused me endless pain, I couldn’t pee unless I pooped first and I couldn’t poop!

I used to wear a condom when I went to sleep just in case I might pee, I tried to will myself to pee but it never happened. I wore diapers to bed, I wore diapers to go out anywhere. I timed every trip away from a toilet with precision, but kept an emergency change of kit in the car just in case the timing failed.

I lost weight and I got very weak. A trip around the supermarket was only possible in an electric buggy. And then there was the diet. Low sodium this and no sodium that and the fluid restrictions were awful for me.

No alcohol of course, not that I missed it at all. I felt so ill that drinking never ever crossed my mind. No coffee or caffeinated drinks, No carbonated drinks. No milk, no Gatorade, no nothing……except water. Oh life was miserable.

I couldn’t stand, or sit or lie down. I found my only comfortable position was flat on my back on a sofa which was ok, but I couldn’t get up. My ascites piled the pounds onto me. I couldn’t wash my feet in the shower, I couldn’t get my socks on and I couldn’t tie my shoe laces.

Then there were the clothes. Jeans? No way, my gut was too swollen. I spent six months wearing nothing but fluffy pajama bottoms, nothing else fitted.

Finally what really tried to kill me was Cachexia – catastrophic weight loss. I became a walking skeleton. My weight crashed dramatically, month after month. By then I knew the doctors were not going to be able to fix me, I could never make it to the transplant table.

 

However, in the beginning…..

October 2008 was not a good month for me. I was unemployed, no insurance, it was cold and I had terrible stomach cramps. Being a typical male I didn’t go to Doctors. Doctors always told me things I didn’t want to hear ‘cos I’d heard it all before. Yes I drank, though would never admit how much, yes I’d given up smoking which was one thing in my favor and no I never got sick ‘cos real men don’t do they?

The reason I could no longer put off my dreaded visit to my Immediate Care doctor was an infected sebaceous cyst on my back which despite squeezing’s and prodding’s wouldn’t go away on its own and now hurt like hell and so it was on Saturday the first of November I made my way to the doctors to see what he could do for me.

During my visit at which he cut out the offending cyst I mentioned the other problems I was having in terms of diarrhea, nausea, and stomach cramps all of which had been going on for some time, but due to the constraints of time he asked me to return on the Monday for a change of dressing and to look into my other issues.

I returned to the surgery on the Monday, had my dressing changed. As I had been lying on my front, he had not had a chance to really look at me and when I turned over he looked startled and just asked “My God, what’s happened to you?”, “your eyes have gone completely yellow”.

He gave me a once over and remarked that my eyes had been fine on the Saturday and went on to say he suspected cirrhosis, was going to order various tests including blood work.

I felt my heart drop. I knew about cirrhosis, a little bit anyway. I knew it was a liver condition and I knew that almost certainly my drinking days were going to be curtailed for some time until things got better.

I never realized at that time quite how serious a situation I was in. I never realized a lot of things. Maybe I didn’t want to realize the reality of it all.

The doctor was talking about going to hospital to get tests done – I was freaking.

Life doesn’t teach us how to deal with situations like this. Illness happens to other people doesn’t it. Apart from a bout of Legionnaires Disease a few years prior, I was 52 years old, hadn’t been sick in the previous decade or so and didn’t expect to be hearing what I was hearing now! The thoughts and emotions began tumbling through my mind going from blind panic to analytical rationalization in nano-seconds, before wondering how to tell people, how to react, what to do…..it went on and on.

I thinks it’s called one of those “Oh Shit!” moments when all of a sudden life is turned upside down and mortality rears its ugly head and the immature thoughts of being invincible get strapped to an ejector seat and disappear in a flash and a bang. Welcome to the real world!

I’d spent my life as an engineer of one sort or another and had ended up doing a lot of advanced forensic analysis on computers and networks. I knew how to analyze and I knew how to think, but this curved ball threw me completely.

I went home and told Linda what was going on and I think we both knew that perhaps this was inevitable. We’d both been having a party for eight years and something was going to have to give.

I reacted to the news in probably the only way I could. I started researching cirrhosis. I knew it was bad, I knew it was serious, in my naivety I thought it would sort itself out after some weeks/months of laying off the booze. There was a lot of information out there on the web about all aspects of cirrhosis and they all included terms about which I knew nothing and symptoms of which I had no experience. The information was diverse, often conflicting, confusing and not really helping me.  It took a while before the reality of my situation finally started to sink in.

Cirrhosis is both untreatable and irreversible.

I think Linda already knew, though she hadn’t mentioned it to me. I don’t think we really discussed it, the implications were just too awful to think about and anyway, the disease had yet to be confirmed. But within a few days my doctor got me an appointment with a Gastroenterologist and by that time, my stomach was already getting swollen and I still had jaundice. He asked me if I was still drinking, to which the answer was ‘no’. He gave his opinion, Cirrhosis and ordered a CT Scan.

A not so pleasant part of having a not so pleasant disease are the not so pleasant things that get done to you as your disease progresses! My first introduction to the awful medical side of having cirrhosis was the need to swallow about 1.5 liters of ‘marker’ before having the CT Scan done. It does come in various degrees of awfulness from the merely nasty through to the unmentionable. I opted for ‘banana’ flavor – big mistake! How I kept any of it down I do not know. The only thing I ever had worse (yes, there is worse) was liquid Vitamin K, which I spewed forcibly within about 5 nanoseconds of the first gulps. I have never wanted to drink dog piss and hope I never will, but this must be the nearest thing to it.

The CT Scan came and went. I never got the results. Within a few days of the scan being done, I ended up in the Emergency Room, at night, in absolute agony from my swollen abdomen and having difficulty breathing. I had put off going for as long as I could – I had no insurance, I didn’t know what would happen to me once I got to the Emergency Room and I didn’t know how I would pay for any of it.

 

6 Comments

  1. kie on May 15, 2014 at 8:19 am

    I have read your article on what you went through due to this disease, and you have really inspired me, I was diagnosed 2 years ago, it started with my having type 2 diabetes and was given regular blood testing on a yearly basis, apparently I was left for 3 years with high liver function, was only told when platelets dropped, still it meant nothing to me, I was then sent to see a gastroenterolgist had liver scan that came back normal, my liver function dropped by half which pleased the gastroenterolgist who was going to discharge me, but left it for a while due to my bloods, then liver function went very high and he then ordered a biopsy which said I had well established cirrohiss, I still felt very well and thought they must have mixed up someone else’s notes with mine, he then ordered a endoscopy Jan 2013 results were small hiatus hernia seen, acid in stomach and 2 lesions that the endoscopist took 2 biopsys of he said no varices seen, then one month later on Feb 2013 I nearly bled to death losing 5 pts blood via mouth lost consciousness due to severe HE and my family told would not survive, but obviously I did, as you know my life has changed dramatically, depression all sorts emotions but really am trying to be positive as I can my husband died August 2013 so now live alone another fear as he was there when I was choking on blood, I was not aware of anything just waking up 3 days later in intensive care as yellow as a daffodil, the anxiety was horrendous as nursing staff were not informative as to why I was there, I really thought I was kidnapped, I will never forget that, so this HE lark frightens me literally, I only get it in small does now, have portal hypertension, massive lge vein in stomach, have 6 monthly endoscopy s and also 6 monthly scans on liver and bloods done at kings college liver unit London, would you believe I have been told nothing and up until now after reading your experience, I am going to ask everyaathing, before that first endoscopy I felt fine now not so fine, still now nothing about meld score but am now going to ask, I have dreadful rehabilitating breathing, and although I have had heart scans, ecgs, chest x-rays all normal, yet the minute I start walking or going upstairs that’s it it starts no doctor can tell me anything, must mention it to heptologist at kings have not asked him yet, sorry for going on you can tell I have no one to talk to about this, for some reason my daughters both in early 40s do not visit, I know I’m being stupid but I am now acting as if I couldn’t care less, as I am so hurt, so I know what you meant when you mention friends disappear ing , anyway everything you said made sense to me and thanks if you can give me any advice, oh I am a 60 year old female not old old just 60 haha. Kie

  2. Stephen L. on June 11, 2014 at 7:37 pm

    Craig, your story is compelling to say the least. It is virtually a carbon copy of where I’ve been where I’m at and as we all know dealing with a? As to where we will end up and go. It’s extremely beneficial to me to have access to this information and your site, it does give me something more than what I have had and just as you know like me you really need something to latch onto so thank you for that. I will continue to be active on your website as I find it intriguing and very accurate for my case. I would like to also tell you how much I think and appreciate my wife Susan. I know you and her have spoken in times past and without her I would have long since been no more of this earth. That’s also a very compelling thought. I’ve never had to rely on anybody in my life for a thing. Now I can’t get my own socks on. Life never ceases to throw a curve balls and it never ceases to amaze me but at the same time most of these curve balls we deal with and overcome. This one is for more significant and when I think about the potential outcomes, it truly is scary. And I’m sure like you in many ways there wasn’t much that scared me before this. Thank you for your insight your candor and your site I look forward to keeping up with it. Hope you have a great day.

  3. craig on June 11, 2014 at 7:44 pm

    Thanks Stephen,
    It is a tough battle but it CAN be won and as you are a former Marine I know you are used to toughing things out!

  4. Nikki on September 28, 2017 at 6:57 pm

    i am so sorry this happen to you . You are a brave person and thank you for sharing your story. I have stage two cirrhosis from fatty liver and stage 3 pulmonary hypertension. I lost faith in God so i dont pray hardly no more. Im still angry he not gonna heal me just let me die young and im only 46 yrs old. Im living day to day and i hate my belly is swelling like im pregnant i hate it so much. But i offen think of sucide but dont have the guts to do it. IM so alone in this world and wish i met people like you if wouldreally help me alot. But im here with no support from family and only have few friends who i seldom see or talk too.

  5. Jazmin Lara on October 15, 2017 at 10:31 am

    Truly inspiring…. i wish i would have stumbled across this when my mother got diagnosed with End Stage 4 Alcoholic Liver Cirrhosis. This gave me a hole new look of living with liver disease. Your are brave very brave…

  6. Mathew on June 15, 2018 at 9:48 pm

    Like so many others my diagnosis hit me like a sack of bricks in the head. I had absolutely no symptoms whatsoever. But one night just prior to New Year’s 2018 I felt a sharp pain in my right upper abdomen and was having trouble inhaling on that side. I don’t drink alcohol, smoke, or partake in any recreational drugs at all…never did.

    I told my wife to take me to the local ER…I thought it was possibly a gallbladder attack. By the end of the day I found out it is cirrhosis.

    I got bounced between 2 gastroenterologists and then sought the advice of a Hepatologist. She cleared up a lot of misconceptions for my wife and I. I’m also going through Eastern Medicine. I’m getting weekly acupuncture and taking Chinese herbs. They have helped to keep my symptoms in check.

    I’m not throwing in the towel…I am only 43 and have a 6 yo daughter. I will survive this at least until she is out of high school. Anything else will be considered a treasure.

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