Thanks to all.: A big thanx to all up... - British Liver Trust

British Liver Trust

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Thanks to all.

cityman62 profile image
27 Replies

A big thanx to all up here,who,obviously, despite having huge health issues, still retain a great sense of humour-and massive humanity.I fully expected to be heavily 'dissed' for my provocative?/honest reflections yesterday-it teaches me that it's an awesome community-whoops,went all American there for a mo;-).Seriously tho,the value here,isn't just educational-vital as that is. It's also about honesty,truthfulness, baring your soul,reflecting on past mistakes,and perhaps for some asking/saying stuff that may trouble your immediate nearest and dearest,so,thanks to all for having/bearing with my meandering rambling.I love you all,(he withdraws rather melodramatically strewing roses as he retreats). X

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cityman62 profile image
cityman62
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27 Replies

Your comments were food for thought indeed. I have not had any alcohol for nearly 500 days, I stopped thinking I had done my Liver in, scared out of my mind.

It tuned out my Liver is fine, but after reading so many stories of people suffering I vowed that would be it even if my Liver is fine im not drinking. So getting over the Liver failure fear I thought about alcohol and life alot. First it was easy to stop, but after a while I understand exactly why people drink. Life is a long hard bitch and I can understand why some people feel we are already in hell. The constant pressure Im under to produce at work so I can pay my bills etc. The lottery of how healthy you are going to stay, some live clean and still die early of cancer or something. everyone you love will die and be forgotten in a generation or 2. The human condition is pretty depressing really, that's why people get high and drink etc.

cityman62 profile image
cityman62 in reply to

It's hard for me to argue with you,because,basically I agree with all you say,the big picture in the UK.is basically a model of civilisation in decline-and that's it.Food banks in the 21st Century,OMG.The vulnerable/sick and poor stripped of what small safety net they have.Ruled by a public school elite who regard the entire working class as 'politically suspect',and potentially dangerous.The most spied on nation-on Earth.numbed and opiated by Argos,coronation St,quiz shows and the Daily excess/Mail.Mums go to Iceland-apparently.Though stats show that Icelandic men have extremely large penises,so fair play....;-).BUT,and Heres the beauty that can't be stolen from us-a robin preening its feathers/dew on the lawn in the morning/watching a spider weave its magic trap/smiling at snowdrops in january/sticking 2 fingers out of your letterbox at the postie when he knocks your door,intimidating your cat with a French horn when he nags for food-again,propping books on top of an internal door and calling in your son with a false alarm!These are indeed HAPPY days,I wish you well,don't fight it,just go with the flow,and ride out the bullshit.live long and prosper.And when annoyed,tweak testicles and run away-fast.P.s.-practise your standing starts..,.

RodeoJoe profile image
RodeoJoe in reply to cityman62

Ahhh you smell it too. There's something rotten in the state of Denmark.

Anne-laure_ profile image
Anne-laure_ in reply to

Hey. Just read your message, I totally understand where you coming from,before I was diagnosed with pbc, I used to come home and pour a wine after a long stressful day, easiest thing to do I suppose to forget our daily stress, til I was diagnosed with high cholesterol levels , way over the limits, I panicked and thought I had to change a few things if I wanted to be alive, remove the alcohol was easy at first, then it hit me big time even though I wasn't drinking loads just that glass was enough to distress at the time, I joined a gym! Going to the gym every other day was as good to relieve my daily stress! :), music on and the world was my oyster,, by time I done a session I was too tired to even think about a wine,, I lasted 5 years where I would only have occasions drinks at parties or celebrations, I changed my diet where my cholesterol levels went from 9,1 to 2,6! Way below normal range, then my life changed again when I started falling ill. On going issues till they realise I have pbc. This time it hit me hard, a progressive illness out of my power,, no matter how I change my life, I will still get Ill, but life is too short to just stop here, so on my good days I'm back in the gym and I totally stop drinking, the gym gives me such a sense of achievement that I would recommend it to anyone! Who knows maybe I will start competing again but till then gym is my wine lol,, maybe you should try it,,, and something else to think about than our precious liver,, take care,, Anne x

RodeoJoe profile image
RodeoJoe

It's refreshing to hear someone talk openly about that fine balance between taking the Dr's advice and really living your life. I was diagnosed with liver disease at about 25 years old, so every drink I've had since then has come with a feeling of guilt. Then about 8 years ago I found out I was also coeliac so gluten i.e. 50% of foods were also "off the menu". It drives me mad when my mates can just go out for a p*ss up, and take away without a care in the world.

I've got mates that got up to all sorts in the 90's took enough drink and drugs for all of us, and they never even got a cold.

cityman62 profile image
cityman62 in reply to RodeoJoe

I totally get what your saying, it ISNT fair,and perhaps we shouldn't ask for that.I've seen blameless peers die,I see some skanky old mates keep doing what I did in my Twenties,and they still rumble along,no doubt infecting a new generation.I dislike the differention between (blame)/no blame hep c infection-it shouldn't matter.Just me-was it sharing a syringe with my idolised older brother,was it giving blood,was it selling my blood in Athens on a long trek,was it sharing a rumpled note snorting speed with friends?Who knows,who cares-it really doesn't matter.What matters for me,is education,particularly for the next generation, our children. They WILL get tatoos,they will experiment with drugs,they will hand round notes and stuff them into a million blood capillaries up their noses.They need to know,they need help and guidance,its our call,we learnt the hard way,they don't have to......Best,Andrew.

RodeoJoe profile image
RodeoJoe in reply to cityman62

I had no idea you could catch hep C like that.

cityman62 profile image
cityman62

I'm afraid so,in our County-pretty rural,my hep c nurse tells me tatoos are the biggest cause of the virus,they throw away used needles of course,but the inks are hugely expensive,so if you only use 5% of say a black ink,you may well hang onto it for reuse,I believe hep c can live in the ink for 4-6 days-not good.As to snorting speed etc involving blood capillaries in your nose,well that's blood to blood sadly.As you say,you didn't know,so it would be good to share this,because Frankly,it didn't cross my mind either 20 years ago.Then again hep c didn't exist back in the day.,..

Mama41 profile image
Mama41 in reply to cityman62

I've got a few Tattoos and they have always poured roughly the amount of ink they need into a bowl and then when they are finished the bowl and left over ink are thrown away.

I've never seen them dipping the needle straight into the bottle of ink :)

liveronmymind profile image
liveronmymind

it's caught from lavatory seats really -

cityman62 profile image
cityman62 in reply to liveronmymind

But I religiously used clingfilm you bounder ;-)

liveronmymind profile image
liveronmymind

LOL So you knew about the clingfilm! but then what did you do with it? Put it in your pocket? :)

dizzime profile image
dizzime

Totaly in agreement with you Cityman, I cant remember how many times, by diferent Drs, nurses , hospitals did I get asked 'how did you get your Hep C' --der-- if I knew i would tell you!!! It was like they were trying to trick me all the time. I said tell me how long I've had had and I will tell you how I got it. I was so embarressed

when I finally got told what was making me ill. I didn't tell any body at first only my hubby. I felt everybody would judge me etc. Rather let everybody think I had a drink problem than tell them the truth. But---as things progressed and reading letters posted on here started to tell close friends and family at first and (suprisingly) -everybody was ok about it, It was more in my mind what people would think than what they would actually do. (if that makes sense) It is such a hidden silent creeping desease which people don't understand. I really think every body should be tested for any sort of Hep, treat it, cure it before it carries on to do the damage it can do as, usually, by the time you find out you've got it --its too late!!! As I found out. Education is definately needed. keep smiling, keep positive and good luck to you x :)

liveronmymind profile image
liveronmymind in reply to dizzime

You were still one of the lucky ones as you found out in time to have a transplant. Lucky you - please, I dont want to be nosy but how DID you get the diagnosis before it was too late........................? because as you said hepatitis IS a hidden silent creeping disease :(

cityman62 profile image
cityman62 in reply to dizzime

Apparently-and I can only talk about my locality here,its still not common for G.P.s to routinely screen patients for hep c.Younger G.P.s are better I gather.That rather staid middle-aged bank manager you know well could actually have been lying,senseless face down in a puddle at the Isle of Wight festival in the early 70s.Or that nice Mrs Thompkins from the grocers could have had a reckless liaison with a racy bohemian French student back in the late 60s.

art4949 profile image
art4949 in reply to dizzime

When most of us contracted HCV it was decades ago...well, speaking for myself, I did loads of things back then that I would never do now...really, I'm on gravity overload these days...that's torture enough for me....oops, off subject..the point is, most of us have moved on so why should we feel guilty for contracting a disease that wasn't even known about before 1987/92..so how could I have behaved differently.

I was having fun and I trusted those around me. I do not believe anyone would have infected me knowingly.

Today, there are so many undiagnosed people with HCV who need to be tested...we are more likely to encourage this by leaving the guilt trip treatment to the pious. You are so right about educating the public about prevention regarding HCV, and that starts at home and in the schools.

Everyone born during the Boomer years should just get tested...forget the lifestyle. HCV has been around in the population so long loads of people are infected indirectly as a result by now.

Now the NHS need to do their part.

liveronmymind profile image
liveronmymind in reply to art4949

HCV and HBV

dizzime profile image
dizzime in reply to art4949

Here Here. There is a world Hepatisis day on the 28th July. If You go on hepctrust.org.uk then press 'get invoved' then 'world hepatisis day' it shows all events that happened in 2015. I am going to see what will be happening for the 2016 events in my area and see if i can help. People need --have to be tested there are a lot of people walking rounf with this time bomb that dont know. with these new drugs it can be stopped. Lets stop this together. sorry that was a tad over the top but hey. keep postive and smile :) x

cityman62 profile image
cityman62 in reply to dizzime

Good stuff,I keep getting urges to do something positive to raise money/awareness.What I find extremely puzzling is that the revolutionary new treatment regime seems to be completely slipping under the media's/presses radar-weird....

dizzime profile image
dizzime

Not nosy at all--i could tell you all about what has happend to me but it would take forever lol. It was when i started bloating out a bit, started to look pregnant but thought it was a bit to much of the beer, when I got to being uncomfortable and looking about 8 months (Jan 2011) I went to my local GP, a different Dr to my usual one, She then told me that it could be due to the hepatitis. i just looked at her in shock and said 'what hepatitis' she then told me that when i had been at hospital for liver checks in 2007 it was showing on my blood tests that I had a Hep virus and asked me what had been done about it, had further checks been made to see what type of Hep it was etc. By this time I was dumfounded and said again to her 'WHAT DO YOU MEAN HEPATISIS!!!) I then explained to her that the consultant who I had seen in 2007 had told me my liver scans where fine and blood tests ok just advised me to cut down on drinking or even stop. i then took this to mean everything was ok. My Dr then sent of more blood tests to see what type of Hep iw was and that came back as Hep C Geno type 3. I was then referred to a liver specialist ( adifferent one from before at a different hospital) who the informed me I had decompenstated liver desease and that I would probaly need a liver transplant in the future. I have since found out that the liver scans he told me were ok infact showed cirrosis !!!. Things then went from bad to worse but thats another story. Hope this answers your question. I found out because of my symtoms of ascites but it should have been ealier. keep strong, keep positive and keep smiling :)

liveronmymind profile image
liveronmymind in reply to dizzime

Thank you so much for taking the trouble to explain all that and I read it with interest. You were very lucky. At least you had some liver checks done but it's terrible you weren't told earlier especially as they 'knew'. But How lucky you were in the end to get a new liver. I have been writing here as it's my hubby who had the hep B ( apparently had it for years and never knew until it was too late............... ) One GP in 2013 said his liver function tests were a bit skew wiff and said its because of having diabetes 2 - - - then last year he was told he hasnt . In March this year discovered the ascites and the rest is history.

I am still hanging around here as a way to cope with my grief. The cirrhosis had turned into HCC liver cancer - and again only discovered all this because of the ascites.

We were told at first that he ' may' be a candidate for a transplant but by the time scans and mri's done etc it was too late - the hcc was too 'big' although only by a smallish margin but they have such strict criteria - and after that he missed the boat every time. He passed away a month ago tomorrow. May he Rest In Peace . I am heart broken.

dizzime profile image
dizzime in reply to liveronmymind

My heart goes out to you it must have been a terrible time for you and your husband to go through all the tests for it to be too late. I'm not too good at this but I hope by reading other peoples stories and you giving any advice helps you in some way. xxx I do believe that if earlier testing was done it would help so many people in the future as liver illness is not nice in any way at all. if I could give you a hug I would, please stay positive for yourself and stay strong x Ruth

liveronmymind profile image
liveronmymind in reply to dizzime

Thank You xx I am trying. And I DEFINITELY AGREE that every one should be tested for hepatitis infections perhaps once they reach the age of thirty and then every five years or so in much the same way people get smear tests and get tested for breast cancer etc - most GP's don't have a clue about hepatitis or liver disease - they ask how much you drink only and then if it's nothing overboard they dissmiss any possibility of liver disease...........

Thank You for your 'cyber' hug and kind words

cityman62 profile image
cityman62

Tragic to hear,I'm so sorry.xxWords are,of course inadequate. A similar story in some respects to my late brother.I hope your coping OK,in so far as you can.

liveronmymind profile image
liveronmymind in reply to cityman62

Thank You, xx yes, i'm doing my best to cope albeit by cracking some jokes and making weird comments on this forum - it's a grief buster technique I think! but i am also sorry that you lost your beloved late brother. Thanks for your reply x (and I thought that poem you wrote was really good! ...the one with" night sweats and past debts" in it! )

liveronmymind profile image
liveronmymind

Cityman62's brilliant Poem:

Ode to HepC

Beaten up,

Kicked down,

Feeling frail,

Friends regard you with a worried frown.

Keeping it dark,

Keeping it deep,

Running on normal,

Feeling like a freak.

Talking the talk,

Walking the walk,

Itching at nightfall,

Spasms in the dark.

Paying off old debts,

With nocturnal cold sweats,

Maybe now regretting,

Those reckless old bets.

dckimberly profile image
dckimberly

I think it's important for you to be you and to express you in whatever manner you deem necessary (as long as your not hurting others) to make life easier.

I got hep C over 20 years ago, and it did nothing, until 3.5 years ago, then it moved fast on my liver, ugh, and I got ascites, I went to hospital..they acted like I knew what was happening..I had no clue. I had been sober for 3 plus years. They said it was too late for treatment..thank good for the new Harvoni treatment, that's made the Hepc go away in my body, and makes it wayyyyyy easier on my new liver.. But still, I was so uniformed..like many drunks, I thought, you sober up, the liver heals itself! Not so, said the girl who is one month post transplant! I for one would like to see more info out there!

As for me, I've been sober a bit over 7 years, and for me, personally, the 12 step program of AA basically saved my life. For me, cuz im an alcoholic, quitting was not enough..I had to find out why I did it, and change me, from the inside, so I would not drink again, but also so I would not act like a dry drunk..someone who might as well be still drinking, cuz their attitude is the same..I was a selfish person who hated myself and wanted to die everyday for a decade. I remember I used to be angry when I woke up in the mornings...lol..mad because somehow, yet again, I had survived the day before..even though I was drinking enough to kill two people. So yeah, the group meetings help me, working the steps, and being able to go to a place and talk about my feelings...lol..I know the Britts are famous for the stiff upper lip and holding it all in..but that is a killer for drunks..and AA is a bit different here than the US but not much.. And has been so great..

Again, that's MY story and no one elses, but I'm so grateful for the program..I've even been in contact with my Spenser and AA pals while in hospital this last month!

Anyhoo..talk about what you need too, whatever gets you through the day..you'd be surprised how many people can relate, or wish they were as honest as you xxxxx

Kimberly

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