Dry for 36 months today ! ( February 23rd. ) 😃
Three Years ... : Dry for 36 months... - British Liver Trust
Three Years ...
Written by
BSA-3
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3 years sober and a compensated liver still going strong! That's a true success you have on your hands and a fantastic example of what staying off alcohol can do to stabalize cirrhosis in the long term. Congratulations BSA!!
How are you feeling these days?
in reply to
Wow!! Congratulations to you, 3 years is a long time so well done!!! Take care Lynne
BSA-3 in reply to
Thank you very much Lynne, I hope you are doing well, take care
BSA-3 in reply to
Hi PhoenixPalazzo,
Thank you for your kind words, they're much appreciated. In answer to your question, if I'm perfectly honest I feel pretty shocking. My legs and feet are swelling again and the fatigue is unbelievable. It's only a matter of time now I suppose, in fact I'm 2 months into Extra Time on my prognosis and the liver and lung consultants think that it will all happen the same as before in that I'll get a chest infection which will turn into pneumonia and then my liver will go again only this time I won't be so lucky. I've no complaints really because I've had 3 years I shouldn't have had, the last of which, illness notwithstanding, has been the best of my life. At the end of the day it's all self-inflicted and I was warned enough times so I can't grumble. I think the hardest part is being immobile due to my lungs and the P.N. and thus being more or less housebound but I get amazing support from the love of my life and I've promised her ( rather rashly perhaps, ) that I'm going nowhere and I'm nothing if not a man of my word so I will never give up. I fully intend to post the same sentence again next year !
I hope you are well and take care.
Nick
Well done! Positivity is the way. I'm sure that you will be here posting this time next year. Roughly 5 years ago I told my wife the same thing. I had been told that I had 5-6 months to live without treatment. You will win through with your attitude. Anyway you can't go anywhere because the love of your life hasn't done with you yet! lol. That's what my wife was always telling me. Wishing you all the very best. Alf
Thank you very much for your reply. I think it's always a big boost to know that you're not on your own ; someone else who is having the same thoughts, the same fears and going through similar experiences. Cheers for for that. Take care.
Dear BSA-3 .....I'm totally in awe of your achievement...you are a 🌟🌠🌟. To have reached 3 years "dry" is simply wonderful to read and then I read on into your story and feel a mixture of emotions. I'm stage 4 COPD and need oxygen 24/7 so I understand how difficult it must have been for you. You are blessed with a devoted wife,who I'd imagine helped you and continues to guide you through the darkest of times. Would you mind if I asked you how you became t-total? Did you use any of the NHS drugs available to help you?
The sun 🌞 is out today so I hope you are able to take in some of its rays! Best wishes.
Hi SquirrelsHolt, thank you for your reply. In answer to your questions ; I became teetotal because I developed double pneumonia and then my liver failed which in turn put me in a coma. As a result, all my detoxing was done whilst I was out of it, which I suppose made things a whole lot easier for me. I never asked nor was offered any of the drugs available to help with stopping drinking but I once took a drug I was prescribed several years ago called 'Antabuse' ( Disulfiram, ) which made you exceedingly ill if you drank on it. I took it for a week and decided that I didn't like abstinence and surely it can't be that bad and so had a drink. Dear god ! It was absolutely horrendous ! I hadn't read the P.I.L. and so didn't know that you had to abstain for at least a week after stopping the drug ! I can honestly say that anybody who took the full course and drank whilst on it would almost certainly not drink again. All clever me did was throw them away and wait the week out, ( which wasn't hard because I was in bed for most of it waiting for the effects of it to wear off ! ) before beginning drinking in earnest again. The rest, as they say, is history.
I hope you are as well as can be and that my response helps in some way. Take care.
Nick.
I hope you believe in yourself as much as I believe in you. I am so, so very proud of you grasshopper. xxxx 🐀 💕
Hi Caspiana,
I honestly believe that I would not be here now were it not for you and your strength and resilience amazes me as much now as when we first spoke. I feel so very privileged to know someone like you and I shall be forever grateful for everything you have done and continue to do for me. Take care xxx 🐁
Give yourself a huge pat on the back. Love your liver, it really deserves it 👍
Congratulations!!!! I am so happy for you well done. Such an achievement. I for one am delighted for you.
Jaycee
BSA-3 in reply to
Hi Jaycee, thank you for your reply. I suppose it is an achievement in a way when you consider how many people struggle so hard with it. I was 'lucky' insofar as my detox was done whilst I was in a coma. I'm quite certain that if I hadn't been so seriously ill at that time, then I'd have started drinking again, so in that respect I suppose I was very lucky. After 3 months in hospital I came away feeling sick at the very thought of alcohol and if I could smell it on someone then I almost vomited and still do, which I count as a blessing. Deep down there is a lot of anger for letting myself get in such a state and what the ensuing time has done to my family so I know for a fact that I'll never drink again.
I hope you are well and again, many thanks for your kind words. Take care.
Nick.
in reply to BSA-3
Well done Nick. You’re doing a grand job. I was ill, bit like hugefredddy, for 4 years before I got on THE list, now T-total 4 and half. Waiting to get on the list was pure purgatory for me as it must be for you. Or are you not able to get on the list because you are compensated?
Whatever it is please keep up the positive thoughts.
Feeling for you (like all the others here).
🤞🤞🤞🤞🤞
Miles
BSA-3 in reply to
Hi Miles,
Many thanks for your reply. I fully intend to keep going for as long as possible but sometimes you do wonder how much further you can go. To answer your question re transplant, I am ineligible for a liver transplant because they say I am not physically strong enough to survive the operation and no matter what I do, never will be. I don't fully understand their reasoning because if I'm not mistaken, liver and lung transplants are not that uncommon nowadays but both my liver and lung Consultants said that I wouldn't even be considered for assessment. To put it into perspective, I have an 'unsafe swallow' ( I don't know the medical term, ) which means I aspirate food into my lungs which causes pneumonia, scarring to my lungs and further infection, each one making me weaker and harder to recuperate from. The usual treatment for this is to have a P.E.G. fitted in the stomach - a half to one hour operation under I.V. sedation. They tried to do it last Autumn and I was in recovery for four and a half hours before they got my sats back up to a normal level ! They then said they'd do it under General Anaesthetic but I noticed a lot of apprehension from the Consultant down to the nurses but when the Anaesthetist came to see me and said he'd do it but he didn't want to do it because he doubted whether he could bring me back and to prepare myself for a long time in I.C.U., I then thought about it, talked to my G.P. and refused it. As a result I now have a permanent N.G. tube which is ok , if a little bothersome at times.
When my liver Consultant first told me that I was ineligible and had a couple of years I was angry and felt cheated and conned. I had done absolutely everything by the book and did everything asked of me including having all my teeth taken out - another horror story in itself because I had them out in two goes under local, not even any sedation, and apparently my jawbone has been affected by a treatment they put me on for osteoporosis so the sockets in the bone won't heal and I can't have a plate because I'd be unable to tolerate it due to this. I also had infection after infection, was given the wrong antibiotic which nearly killed me and I really was ready for the 'off' at that time.
So, that's why I'm not on the list. I personally think that they won't do it because of the scarcity of livers and they don't want to risk 'wasting' one on someone like me. If anybody reading this hasn't got an Organ Donor Card, then they might want to consider getting one so that one day there may be enough organs so that people like me might get the chance. Going slightly off-topic ; when I read that post the other week from somebody's wife asking if it would be alright to drink 'moderately' now he was transplanted, it made my blood boil ! If he's an alcoholic he knows that there is no such thing as moderation. What about his donor and family ? Isn't another chance at life enough for him ? Why on earth would anyone put themselves and their families through the hell that is decompensation and liver failure again just for a drink ??? Anyway, I digress ...
I hope this helps clear up anything you were wondering about and I apologise profusely for its' long-windedness. Take care.
Nick
in reply to BSA-3
Wow Nick. What a sad sad story, not even being given the chance to get on the list - absolutely heartbreaking 😢. And I mean😢.
I am at a loss for words...
I expect you’ve already thought about second opinions etc? Perhaps you’ll be “lucky” like alfredthegreat who was on “death row” for over 4. Years and then something happened thhat meant he could have a transplant (sorry. Freddy, I’ve forgotten the details- you know my memory 👎🏻).
Hw old are you not that it makes any
difference....?
Drinking after a transplant? Are they stark raving mad. They must surely be 👎🏻
I really hope they bring in this legislation soon that mean you have to opt OUT of organ donation rather than opt IN. I’ve keep registering every time I see something that says please register 😁 just to be sure 👍.
All the best Nick
Miles
in reply to
Miles,
I really am not being pedantic but it is perceived consent. You must make your wishes perfectly clear to your relatives, as well as opting in to be a donor. That remains the same when we get the opt out clause through Parliament.
Mark.
in reply to
Yes you are pedantic - how can you turn my simple comment into something unnecessarily complicated. Sometimes you should just chill and go with the flow. Totally unnecessary response.
BSA-3 in reply to
Hi Miles, thanks again for your response.
I did consider at one point a second opinion but I think you have to be realistic about these things. I have good days and bad days like everybody else and I sometimes think that, on my good days, I could 'pass' the transplant assessment but my bad days now far exceed the good and some days I can barely move, whereby with every movement I have to think, " Is it worth it, " or " How long will it take to come back from, " if you understand my meaning, so I think my Consultant was right when she said that they wouldn't even consider me for assessment. Last year I went for a 'Fitness To Fly' assessment. I turned up, all raring to go for the 6 minute walk test, all pumped up in a vain attempt to get my sats as high as possible for when they took my obs, and they wheeled me straight past the area where the test should have been and into a Consultant's office. He turned to look at me and started laughing ! I asked him what was so funny and he said that the only way I would fly would be in an Air Ambulance ! As a result I think it highly unlikely I would pass something as rigorous as a transplant assessment. Another factor in my decision was that I assumed the Consultants and surgeons will be a pretty closed shop whereby, if they don't actually know each other, they are well acquainted and I think my case would've been decided with a couple of emails and phone calls rather than by me travelling to Birmingham or wherever. I haven't given up yet and I never consciously will but that's the state of affairs as regards me at the moment.
I hope this goes some way in answering your questions, Miles, and thank you for your interest. Take care.
Nick.
in reply to BSA-3
Nick
That was a very interesting reply, thank you. I now understand your predicament a bit better!
Did the Consultant really say that to you at fitness to fly session? You should have teported him/her because that sort of comment is totally inappropriate. Seriously- i think they are not allowed to say those sort of things. So what was he basing that on? Your previous tests? If so why was your time wasted by having to go the test? I am baffled (yes Snoutie I know its not difficult in my case 😁).
So as others have said it’s all a bit of a bummer for you ☹️👎🏻
I wish you the best and hope by some miracle or other you can get “fit” enough for the Assessment. I’m not sure if fitness comes into it in absolute terms though. One of the extra tests I had to do was a myocardial test. For ths you were supposed to walk/run on a treadmill. Lol I couldn’t walk or run on it so they gave me some stuff via IV which made by body react as though I had been running. I don’t know what happened because I never felt my pulse rate increase at all and I still passed!
Which tests do they think you can’t do - surely they can tell you that?
Miles
BSA-3 in reply to
Hi Miles,
I should have perhaps explained further, my apologies.The Consultant went on to say that just by looking at me he thought I'd need at least 4l/pm, probably 6 or more and that the airline would only provide two, furthermore he also said they'd refuse to fly me as too high-risk. To be fair, all my other doctors had told me it would be a waste of time but I was desperate to be somewhere at that time. As for reporting him, well, to be honest, he was like a breath of fresh air, no pun intended, and I came away appreciating his honesty and candour. It was hardly a great shock to me.
As for the liver transplant assessment, I've only ever had a vague idea as to what tests were involved, not really seeing the point in worrying about what would never concern me and also because if my liver Consultant said that they wouldn't even consider me for it, then that was for good reason. I hold her in the highest esteem and her word is good enough for me. I was vaguely aware of a fitness test similar to the 6 minute walk which immediately knocked the wind out of my sails ( pun again ! ) because not only do I struggle with that due to my breathing but also because I'm virtually immobile down to P.N. and the pain that walking for 6 minutes would bring on made me wonder if it was worth it when they'd already pretty much decided that I wasn't eligible anyway.
I hope this answers your questions Miles. Take care.
Nick.
in reply to BSA-3
Thanks Nick 👍
Just a moot point because you say it’s irrelevant you don’t have to do the actual 6 minute walk. At that timeI couldn’t walk for even one minute, that’s why you can do the alternative I explained above.
What does 4l/m mean? Ditto P.N?
Miles
BSA-3 in reply to
Hi again, yeah, I got that re the walk after re-reading your response, sorry.4l/m means 4 litres of o2 per minute and P.N. means Peripheral Neuropathy i.e. severe nerve damage to my lower legs, but mainly my feet which is because of Wernicke-Korsakoff Syndrome, a disease which damages the brain and nervous system brought on by ... you've guessed it ... severe alcohol abuse. Am I blessed ???
I hope this helps.
Nick.
in reply to BSA-3
Hi Nick
Does that mean you always have 4l/m all the time? If not why different on a plane. On new planes like B787 the cabin air pressure is quite a bit higner than old planes...
Hey well, i have some PN also then - but caused by diabetes! No-one even mentions that any more...
Miles
BSA-3 in reply to
Hi Miles, it means that 4l/min comes out of the tank through the nasal cannula, yes. I don't think cabin pressure has much to do with breathing problems but the o2 concentration does. Normal room air has about 21% o2, whereas in a cruising plane this apparently drops to 15% which is a big difference for someone with severe respiratory disease. This is how it was explained to me by that Consultant. I think cabin pressure can make a big difference for those with varices however.
Nick.
in reply to BSA-3
Having worked on the B787 during my time at RR I was interested in its improvements. Although the level of detail in the following was beyond my remit I took a mild inerest 😁
Boeing say..
“The research showed passengers' bodies reacted at 6,000 feet similar to that at sea level," Emery said. "So we decided to pressurize the Dreamliner at 6,000 feet."
At 6,000 feet, the cabin air is more dense and has a greater level of oxygen saturation. As result, the body does not have to work as hard to oxygenate blood and sustain itself.”
Sorry if it doesn’t help, but I’m not always certain people outside of the industry always know the ins and outs of improvements.
As they say Just twopenny’s worth 😁
Miles
BSA-3 in reply to
Hi again, I really cannot comment on that being neither a doctor nor an aircraft engineer, I can only repeat what I've been told. I can only say that someone with severe respiratory disease may have sats in the mid-80's at rest, e.g. sat in a plane, which is borderline dangerous, whereas a healthy person may have, or should have sats of 96-98% at rest. This is at sea-level with normal room air and an oxygen level of 21%. In a plane at cruising altitude I've been told several times that the oxygen level in the cabin is only 15%. Whilst this should not present any problems to a healthy person, that oxygen level soon takes the ill person into dangerous territory requiring supplemental oxygen. If the ill passenger is already on oxygen the 2l/min the airline provides might not be adequate to take it up to the percentage needed and they would refuse to take someone who needed more than this as high-risk. Again, this is how it was explained to me so if I'm wrong , then I apologise but I think my numbers are correct. Also, if somebody with sats in the mid-80's got up to stretch their legs, bathroom, etc, then their sats would drop like a stone and the on-board supplementary would not be enough to bring their sats back up to safe levels. I hope this makes sense, I know what I'm trying to say ! 🤯😁
Nick.
in reply to BSA-3
Nick,
I appreciate that one, there are no bars on the ward where you are on IV drips and quite frankly, you know it’s game up. Good luck and well done again.
Mark.
BSA-3 in reply to
Cheers mate, thank you
in reply to BSA-3
Small and irrelevant question but is your username after a Rocket 3? I had a B25 once?
BSA-3 in reply to
Hi snoutie, yes it is ! The bike of my dreams when I was a little kid ! Apart from the Honda multis, Helmut Fath's URS, Gileras and MV Agusta's, which were all very highly specialised factory bikes, I still have never heard anything as sweet as a Rocket or Trident 'on song' ! Bloody marvellous !!!
Congratulations on 3 years sober. That is a massive achievement. Here’s to your extended life and the next 3 years. Success stories make my day xx
Great News!!!! Well Done👍 I am just over 2 years booze free, and would rather cut off my left leg than start boozing again. Although if I did, at least I would lose weight🤣
Celebrate your achievement with a soda & lime.
David
in reply to davianne
Why does the price of Lime and Soda vary so much? I actually shouted at the landlord who tried to charge me £3:00.
Cheers David and well done you for your 2 years. Funny, but I could murder a soda and lime right now ! 😃
Nick.
Hi Nick, do as I do and order loads of it in my on-line shop. Another fun result in abstinence is watching other people get squiffy. We had a drinks & nibbles party at our Vicar's on Xmas Eve, and one of the parishioners got absolutely smashed and was stumbling, spilling his wine over people, and being generally obnoxious. He was asked to leave by the Vicar to cheers from the other guests. People watching can by fun for us ex-drinkers.🤣
David
A fantastic achievement, and I'm just bowled over by how you have such optimism after having gone through so much! You're a real inspiration to all of us on here!
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