Hi all, hope everyone is coping with this new lockdown! After being sober for 21 months, and having a severely decompensated liver, and 3transplant stand downs, I find myself having normal bloods, etc, I have an appointment finally with my consultant on Thursday and I am terrified that he will discharge me!! Surely I should feel happy but I find myself wanting to have a drink !! Help!
Decompensated liver recovery - British Liver Trust
Decompensated liver recovery
Don't even talk about wanting a drink if you wish to remain on the t/p list. At your appointment on Thursday take with you a list of your current meds, current symptoms being experienced and list of questions you want to ask.
If they suggest taking you off the list because you are stable enough it is a good thing as you are better to keep your own liver as long as it keeps you going because at the end of the day not everyone gets the Golden Ticket from transplant. Some people feel worse afterwards than before, something like 5% actually die during the procedure or quickly afterwards. When my hubby was delisted we felt like the light at the end of the tunnel was snuffed out, we had a lot of mixed feelings over it and I have a post on here about it somewhere with the emotions we went through BUT five years down the line hubby is still here, still walking every day, being monitored regularly and doing 'ok'. Yes he very much still has issues but he is well compensated and you'd have to be too before they took you off the list.
If they suggest delisting then say you wish to stay under the t/p hospital doctors to be sure you are getting the appropriate level of monitoring and have a contact there in case things start to go downhill again and you can get back on the list.
When hubby was delisted he attended t/p clinic and to be honest we saw no continuation of care, getting told different things each time we went. We asked if we could just see the one doctor and the same doctor whom we'd seen initially and who had taken over hubbies care in 2013 kept him on her books. So hubby sees a local gastroenterologist (to keep him in the loop in case of local hospitalization) and his consultant in Edinburgh at her liver clinic and she is in overall charge of hubbies care.
I have to say that I'm feeling a little bit scolded by some of the response I have had! I am very aware of the hard work the team have done to get me this far, but also as we all have had tough times and been told I had about 3 months to live at one stage. In the last year I have lost my mum, my sister got sick at the same time as me and sadly died in an awful way from a brain tumour, then four months later her husband hung himself!! So no I don't want to die or put my family through anymore pain! I just fancy a drink occasionally!!
I certainly didn't mean to scold you, I was just saying that any mention of a drink will probably get you debarred from transplant list full stop and you've come a long way and if you want that chance of a future you certainly can't falter from sobriety. Be sure to get help if there is a chance of slipping and your t/p team might help with that.
Maybe you need some help at the moment to stop those feelings about drink because if you do go back to it - even once - then you'd lose your chance of transplant.
Thanks for your response, I wouldn't be telling my consultant that I want a drink, and if push comes to shove I won't be having one, I have come a long way and it was only me pouring it down my neck for forty odd years, and it's only me that can stop doing it again! And I WON'T!! I just wanted to reach out to people who may understand. I appreciate it.
Hi dotandken. Firstly, great news that you’ve stabilised. Secondly, isn’t it great to come here and know how supported you are?I had liver failure April 2019. It is hard isn’t it struggling with a decomposed liver. Remember? Of course you do?
The tears. Fear. Terrors at night. No body temperature regulation. Itching that is indescribable keeping you awake. Bruising everywhere. Shakes. Wondering if every slight pain is the beginning of the end etc etc etc. Yes, that long, terrible, hard fight you had to go through! Well done! Do you remember? Then you would start having a few good hours in a day but you darent hope you were getting just a little better. Then those few hours became more prolonged. You started to enjoy your family(so sorry for your losses) your friends, your relationships because you knew how close you came to not being here anymore.
Please, please. Reflect on what you have fought through. What you have had to overcome and mostly what you have gained.
True sincere love.
Great memories and horrible reminders that you have beaten!!
Every time you feel like a drink , and we all do, please think of what you have, what you will lose and when you sip at your lemon, lime and tonic(my preferred tipple) smile to yourself and thank your Heavenly Father that you are there! xx
What a breath of fresh air you are!! Thank you! Went to see consultant today and with my ukeld no at around 50, kings hospital were emailed and their response was almost immediate, saying that for the present,I am being suspended from the list! Bitter sweet emotions. But somewhat more relieved having seen my consultant face to face. He reassured me and congratulated my progress and not to give up. Still monthly bloods,and an ultrasound to check for nodules. Time to start chapter 2!!
Hi, I’ve just been browsing the posts and came across yours. How are you doing? I hope you’re managing to stay strong and keep your head up. My mum had decompensated liver disease. I never knew but I wish I’d had the chance to tell her how proud I was of her for trying her best. I’ve been doing so much reading since she died and it really does seem like alcoholism is a truly terrible disease and that people suffering from it need so much help and support so I just wanted to send you a virtual hug xx
Aww thank you so much🤗! Im really sorry about your mum, you must miss her! I have three grown up children, and thankfully they are really supportive for me. And so proud that I have managed to stay sober, I don't really give them all the gory details, my poor partner has all of that joy!! I am very well at the moment! I do have a lot of joint pain, which can be quite debilitating sometimes,but I will see doctor about that. I think that sometimes it's the guilt of knowing that I did this to myself that is hardest. It is hard after drinking almost every day for forty years ,to just stop. But eventually I will get to hug my children and grandchildren and be very grateful that I got really sick, but a lot better now! I thank you for your kind thoughts and taking the time to send me hugs! You are a diamond!! X
You won't be discharged. My husband's liver was decompensated when he found out he had cirrhosis. He stopped drinking straight away and his liver is now compensated with his blood results being stable. He'll have six monthly check ups for the rest of his life - if you have cirrhosis it won't go away but there are lifestyle changes you can make to help it stay compensated. If you're going to have a drink make it a soft one - or a coffee which is said to be good for the liver (in small doses)
Thank you, I didn't have that drink, but abstinence seems to be getting harder instead of easier!
Are you getting any counselling for your drinking? It's very hard for a heavy drinker to stop and STAY stopped without any help. If you don't want to go to AA (and many people don't) ask your GP about alcohol and drug community counselling services in your area. I still get cravings oc occasionally, even after three years' abstinence.
Thank you, I am generally ok with it, I just think things have just come to a head of late. I will speak to my consultant on Thursday. And see how that goes.
It's never easy giving out advice, but more so support, as we all can throw our hats into the ring and sometimes it might not be the right thing you want to hear, sometimes things happen, and all of a sudden it can trigger of a mechanism that may want you to have a drink,it could be a passing phase,or a build up of things that's been happening, which from what ive been reading has been quite an upsetting time for you, however, this is your time, and you have done a fantastic job to get yourself to where you are,and we are all different, I'm coming up to 9 years sobriety, and have not had the urge to drink since the day I stopped, and this is where we are all different, so ,its just trying to find out if this is just a blip and can you ride this out without any urges too drink again, I'm not having a go at you,just trying to let you know that we all care about our fellow members,drinking is not just a drink to most of us who have struggled to stay sober, its those around us who are also involved can see the damage, but are helpless to a certain degree,I wish you well on your journey to staying healthy and sober.
Thank you! And well done for 9years!! I will get there, I have got my stubborn streak back and that demon has been pushed back into the depths, it won't resurface!! Too much to live for and not enough time to sit feeling sorry for myself! This time next year I am determined to be all that I can be!! Thanks for your kind words.
You will get their, and its trying to find your own way sometimes, but it's with support, if you feel that you are tempted, everyone deals with the drinking differently, I'm as stubborn as an mule,and once I make my mind up too do something I'll follow it on, I decided to stop smoking on the last lockdown without any patches, or any other form of help,I emptied the ashtray one night and that was me,that was 20 years of smoking done with, but like I said we are all different, its like a certain medications might work for one person, but not on another, but you sound very determined,and I never thought I'd have 9 years of sobriety under my belt and the years have flown bye,and I don't regret a moment,good luck for the future 🤗
It's in your head now well my bloods are normal I must be ok for a drink that's the alcoholic side of it but the right thinking should be telling you my liver is still scarred and if I take another drink I will be back to square one saying till yourself I wish I hadn't of done it I've been sober over 6 months my god it's one of the hardest things I've ever had to do I was diagnosed as borderline cirrhosis 7 months ago but unfortunately they should have told me 2 years prior some mix up but all I got was a phone call in june to tell me and I would be tested every 6 months I've had bloods done by the doctor all the bloods came back satisfactory and normal then got a message 3 weeks ago by my consultant at the hospital to get bloods done for him got them done but haven't heard a thing back my anxiety is through the roof and if I drank it would be 10 times that dont do it stay sober for your own peace of mind and personally I think would be an insult to the team trying to help you I know if I ever get a face to face with my consultant the first thing he will ask me when the last time you had a drink I got hold my head up and say I haven't touched a drop since I got the news and I will feel good about that because you have to do your part it's not worth the anxiety the guilt and the more damage you can do to your liver I know it's tough but so is dying my best friend died through drink and it's a horrible horrible death
dont do that you wont live long at all drink last thing on my mind go for a walk cofee or talk to friend