New to all of this: Hi. Not sure where... - British Liver Trust

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New to all of this

Xenom0rph profile image
42 Replies

Hi. Not sure where to start really. Headline is that all of it is down to being very silly with booze.

Started many, many years ago with NAFLD then the dreaded cirrhosis.

Stopped drinking for 6 months then thought I'd have another go and that was it. Eyes went yellow and felt the worst I've ever felt.

Fee days in hospital and discharged. Eyes and general colour back to normal now but I'm still scared. Regular bloods and scans will ensue but I guess I'm posting here for some real world human interaction outside of hospitals etc.

Otherwise I'm reasonably healthy but very tired and light headed to the point of almost passing out just starting today.

I suffer high blood pressure and general anxiety all down to the poison that is booze. However the past is the past.

Doctors tomorrow to talk about the light headed feeling etc.

So yeah, hi. I guess the rest begins here.

I shall go and have a peruse.

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Xenom0rph profile image
Xenom0rph
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42 Replies
ScotKat3 profile image
ScotKat3

Hi, I'm fairly new to this forum too. Joined as I've a family member with end stage liver disease. I hope you're next few appointments help resolve your light headedness.

This group has been very supportive for me, and I'm sure you'll find the same.

Xenom0rph profile image
Xenom0rph in reply toScotKat3

Thanks Scot. I'm still. It entirely sure what end stage means so still reading. Not sure how close I am!

Bootandall profile image
Bootandall

Hi x! Welcome to the forum.

Cirrhosis is end-stage liver disease aka stage 4 fibrosis. There are also 4 stages of cirrhosis, so it is a little confusing. But the main thing to know is that whatever you want to ask or talk about, you can turn here for help. Hope you're enjoying your weekend!

Hi and welcome xen

Please don’t get anxious - yes I know you will say it’s all very well for me to say that because I’m not in your shoes! But I have been, as have many others on here, What I learnt is you can spend your whole time stressing and it does nothing to change the outcome except perhaps make you feel worse if not make you actually worse.

Try somehow to relax and take one step at a time. Each step might be going to the doctors, going for a test, getting the results - really a step can be whatever you want it to be. What you will find though is that everything takes time, sometimes way longer than you want it to take and sometimes longer than it should take - in an ideal world.

Clearly your next step is going to the doctors to talk about your light headedness and sort that high blood pressure! Of course you have already recognised the fact that alcohol is not the answer and could be the cause of your recent suffering so you probably will want to sort that out and make sure to ask for help to sort it out if you, like many others, need help! Do tell the doctor about what you drink and no fibbing - I fibbed for years and years - silly silly me ☹️. But I can’t now be a hypocrite and say don’t drink but I wish with all my heart that I hadn’t drunk alcohol like it as going out of fashion and I wish I had found this forum years ago just as my woes were beginning!

Try and enjoy the rest of the weekend, like Boot has said already, without worrying - too much!!

Good luck and let us know how you get on.

Xenom0rph profile image
Xenom0rph in reply to

Thanks Pilo. I’ e Posted a rather lengthy update below on today’s state of affairs and some of it based on your words that resonate so well.

Keep moving forward and never give up. I think Walt Disney said that.

Xenom0rph profile image
Xenom0rph

Thanks all. Very encouraging. All in I do feel ok because I do realise that what's done is done and now it's damage control. I am a born worrier and it does me no favours and booze was used and abused as I have always been a terrible sleeper

Coupled with a high pressure, successful job just compounds things but a priority shift will happen.

I avoid the "poor me" thoughts as much as possible as I know there is always someone put there that is in a much worse place than me but that in itself can let complacency creep in. And that, my friends is when you think YOU are in control when we know fine we'll we are not .

01:38 and can't sleep despite the pills prescribed to help combat that but compounded by a shitty day overall.

Peace!

Bootandall profile image
Bootandall

I am in America, so I hope you are asleep now, but I'm up if you're not. 😊

Jason13124 profile image
Jason13124

Hello,

Welcome to the forum. I've had liver issues due to drinking and I found naltrexone helped keep me off the stuff (for the most part), unfortunately also having to keep some distance from friends who like to drink. I hope you find the forum positive and helpful x

Popel profile image
Popel

Hi there xenomorph.i myself was reasonably healthy up until a fourth bleed in November last year I happened to do a really physical job.and unless your knew what you were looking for i guess you wouldn’t know.my liver was packing in with stage 4 liver cirrhosis and after being a functioning alcoholic as in I only drank after work and at weekends I also had hepC.and nobody knew let alone myself that I’d carried the hepC virus all my life and only got rid of it by a course of Harvoni summer last year.so long story short I had a TP five months ago.and in hindsight I took my health for granted and its my biggest regret but there’s no looking back and I knew deep down that drinking was killing me but carried on regardless.most people assume if you’ve had a TP through alcohol that you drank spirits out of a brown bag or something and they’d be surprised how much actually you need to drink to end up with liver disease.staying away from alcohol is crucial which you know so don’t be playing Russian roulette with your life.lots of people Carry on thinking I’m ok and actually wait till the shit hits the fan then decide to stop and realise they’ve got a decomponsated liver so don’t be one of them as you can reverse this horrendous disease.take care paul

davianne profile image
davianne

Hi Xenom0rph, Hello and welcome to the crew. You have made a good start by admitting you have a drink problem, and giving up the booze. There are loads of us on here, who can help you through your journey, so just ask away as doubts or worries come into your mind. First thing is to get your lightheadedness sorted, I used to get this when I gave up booze nearly 3 years ago. For me, it was lack of sugar that the alcohol gave me. After that,you need to get some new tests, liver function blood test, an ultrasound, and finally a fibroscan to see how much your liver is damaged. Try and get some medication for your sleep problem, I take amitriptyline for mine. I hope you get control of your cirrhosis. I have stage 4 cirrhosis, compensated, and it's manageable, but there's no getting away from the side effects of tiredness, joint and torso pain, and sometimes HE.

David

Bootandall profile image
Bootandall in reply todavianne

Hi David,

Don't you take anything to prevent HE? I'm on lactulose and rifaximin, but am having some bathroom problems and have been feeling a little house bound because of that. 😕

davianne profile image
davianne in reply toBootandall

Hi Boots, No , I only have mild HE, and anyway, after the torrid time I had with Loo problems when I was first diagnosed with stage 4 cirrhosis nearly 3 years ago, I don't want to be housebound as I was then. When I had a colonoscopy, the bowel cleansing Moviprep I had to take before, was awful, but fortunately I haven't had to have another one.

David

in reply todavianne

I thought the moviprep was OK when mixed with orange squash........ The colonoscopy on the other hand - never again please!

davianne profile image
davianne in reply to

Hi Milipoo, I put lemon juice in mine, but it was the quantity of liquid I had to drink in such a short time, that was the problem for me 🥛🥛🥛🥛🥛🥛. Oh the colonoscopy Arrrh, I don't like having my photo taken at the best of times, let alone a movie of my insides 🤣🤣🤣🤣. The blue pants with rear ventilation were quite fetching though 💨💨💨💨🤣🤣🤣

Iddav

in reply to

Moviprep is shite!!!! 😅😅😅

I had my first about 15 years ago with no issue! The second time ERRR !!!! Immediate reaction to sash, felt really ill and almost blacked out as if allergy! Not a good situation to have been in ! Hospital told me off for taking second sash !

in reply to

Not surprised if you left a 15 year gap between the first sash and the second sash. It had probably gone off..

in reply to

Smart and witty as usual 😁

Aren't you away?

in reply to

No - still awake. Soon though I hope.

in reply to

Whoops my mistake ! 20th logged in head!

Just arrived home 5 mins ago to nice plug in smell thoughout Ahhhhhhh ! Everyone must think I'm sad ......

15 mins and bed to think !

davianne profile image
davianne in reply to

Oh Trish, the naughty step for you girl👉👉👉👉 Oh Moviprep the gift that just keeps on giving🤣🤣🤣🤣

in reply todavianne

Yes I agree! It should have been the naughty step 😣😣! I did take my punishment /telling off well and shrank into the corner !!!😁😁😁😁

Bootandall profile image
Bootandall in reply todavianne

Yeah, but of course the colonoscopy was necessary. Mine picked up diverticulosis and polyps, l hope yours either gave you the all clear or at least was similarly beneficial. The lactulose and rifaximin can be confining. They do however work to keep the HE from building up.

davianne profile image
davianne in reply toBootandall

Yes Boots, they found diverticulitis and polyps in my colon, which were biopsied.

I never heard back about the results, so I assume they were OK.

David

in reply todavianne

Hi Davi

I had a polyp removed a couple of months ago from colon and biopsy result arrived by letter a couple of weeks later addressed to my GP and copied to me which was clear!,

in reply toBootandall

Yep mine were snap too in fact snap snap to be precise. I don’t mean the camera clicking but the card game 😁.

Milp

in reply to

More wit! Pretty please, are you on new meds as you crack me up ! What's your secret ?

in reply toBootandall

Bootandall - absolute sympathy!

in reply todavianne

Well written!,

Bs1524 profile image
Bs1524

Hi and welcome I am new to this too. I am trying to support my husband through this and everyone here are so helpful and supportive. Hopefully your doctors will be able to give you some answers and the trust is a great source of information.

Xenom0rph profile image
Xenom0rph

Good morning all. Thanks again for all the replies. This morning I’ve awoken feeling pretty good both mentally and physically. Here’s hoping i’ve At least got my head in the right place which in my experience is a good thing. I’m an extremely active minded person however also fiercely private which leads to me leaving things far too late to give my body its chance to make its ailments known.

Anyway, someone above mentioned getting the usual tests done but I should be more clear about the history of my journey that has led to where I am just now.

Many, many years ago I had a routine test done for something else, I forget now but then my LFT’s were showing as out of range and at that point we put it down to a fatty liver. Thinking nothing of it and being almost a decade ago I thought, sod it, i’ve Got time to sort this. Sound familiar?

Anyway, time passed, as it does and I drank, ate crap and got up to all sorts of no good. As the saying goes “You may not remember the 90’s, but your body does”. I’m 40 this September and when the consultant realised this she audibly gasped “you are YOUNG”.

That was the first diagnosis of cirrhosis. I stopped for ages, got bored, got complacent and long story short 2 or three more episodes of varying time frames has put me where I am today.

I have a young daughter, beautiful wife, home, excellent job that until now meant that I had this whole life sewn up and could now just enjoy to excess right through to retirement where I could enjoy all the good things i’d Worked so hard to build. Complacency, again.

I’m hopeful that I can still achieve the above although how many years i’ve Taken off my life I don’t know but what I do know is that i’m Planning the rest of my life based on milestones that will occur as my daughter grows up; her 16th, 18th, 21st, 30th, maybe first child, walking her down the isle etc. The kick in the teeth? I’ve did so much damage that i’ll Never be able to enjoy a glass of bubbly with her throughout any of those milestones, or call her drunk one evening to annoy her into picking me up from the pub.

But, forever the optimist and forever the stubborn sod that I am i’ll Be ALIVE. I’m not religious, I don’t believe In a “god” as such but I do believe in something. At the moment that is self preservation and making Sure my affairs are in order, financially at least so if the worst does happen my wife and daughter will want for nothing.

Bit of a long one and a little melancholy, sorry about that but it’s a textual snapshot of where my head is at the moment and some of the thought contained therein.

in reply toXenom0rph

On the plus side xen you are indeed young - but that doesn’t necessarily mean you escape Scott free as you are now aware. There was someone brought into my ward post my TP and he was younger than you and he was yellow, boy was he yellow ☹️. He freely admitted he had been drinking excessively for years. Hopefully you are not as bad as that and also hopefully being young any medication you have to have you will tolerate well. If the worse happens and you need a transplant you should be able, hopefully again, to recover quickly.

Good luck!

Miles

Xenom0rph profile image
Xenom0rph in reply to

Thanks Miles. This most recent episode was initiated because it was my eyes that went yellow and I got the fright of my life. I barged my way into my GP and demanded bloods to be taken and it snowballed from there.

The consultant said that if the treatment doesn't do it's thing then the worst case is I had 4 weeks. Scary.

My skin wasn't really yellow though, just my eyes but I had just stepped off a plane returning from holiday with tanned skin so that may not have helped

Anyway, one day at a time. I'm awaiting a call from the consultant to put a regular check up plan in place.

I am very bored. I need to get back to work but that as you may appreciate provides its own stresses.

in reply toXenom0rph

Hi XenomOrph

Firstly a great big hello from me with a smile attached 😁 I wont say welcome to this great team of people as I see you've already met some of them who have given you some great advice, so I wont bore you to death just yet 😅Joking!

All I'm going to say to you is your young and you've come to your senses before it's to late! You will be around to watch your daughter grow up if you keep focused and enjoy life together!

Take care and try no to worry to much! I'm now going to bed as I've been in the car/ferry since 10am this morning and its now 23.44pm so nighty nite

I look forward to following your news.

Love Trish

Xenom0rph profile image
Xenom0rph in reply to

Thanks Trish. You're right. This place seems to be the most down to earth unbiased online resource I've used that has let me openly discuss what's going on.

I'm an avid user of Reddit and if you can trudge through the nonsense there are some good stop drinking communities but nothing that forms a hybrid platform where you don't have to break down the message so much.

I'll keep updating if people are interested in reading how I go. Likewise I've begun looking for similar stories to mine to follow.

Dream well.

in reply toXenom0rph

Of course please keep us informed Xen. But only when you have had lots of good sleep which is what you should have been doing when you wrote this - 0130?

💤 💤

Miles

Xenom0rph profile image
Xenom0rph in reply to

I know. My Achilles heel unfortunately. Sleep has always been an issue.

in reply toXenom0rph

Good Morning !

Hope you eventually slept well and managed to dream too! Cheers for reply too!

in reply to

Look who's talking.......2.....something

in reply to

Pilo's not biting today!!!!! so will go and cut the lawn ....

Bootandall profile image
Bootandall

We are thinking of you and your family when we say, work can wait until you get this sorted. The lightheadness could be the start of HE, hepatic encephalopathy. Or high blood pressure, high anxiety, really any number of things. But you can't just ignore it. It is important to get a better understanding of what is happening so that you can prevent further symptoms from manifesting, that's the name of the game now. You need to be totally honest with the doctor and of course yourself in order to get the best care now, good luck with your "latest project"!!

Xenom0rph profile image
Xenom0rph in reply toBootandall

Thank you! I'm a programme manager to trade so you're right about my project lol. I'm a serial planner.

Before I go and Google too much, I have read a bit about HE and do seem to have manifested a few symptoms but what are the cause and effect and long term treatment? I've chosen not to drive at the moment for obvious reasons but it scares me that I'll not be able to drive or ride again.

I have a telephone consultation with the doc tomorrow where I'll discuss further.

Stay tuned!

in reply toBootandall

Lovely reply Boots!

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