Hi Everyone. I'm so sorry to bother you all again, but I've had a very down day. I just thought I'd post a reply I sent to one of the lovely members of this group, with the hope that maybe someone could share with me and the rest of this lovely group how they cope with this condition. I wrote to him that " Your reply came at just the right time as I've had a very down day today, constantly thinking that because cirrhosis is called terminal, that I might not have long left. It's the uncertainty that's got to me I think, and the mixed messages I get from my specialist. One moment he's telling me I've got less than 5 years to live, then during the same appointment he tells me I can reverse from decompensated to compensated, and he then he mentioned a patient who lived for well over 20 years with this. The mornings, when I first wake up, are the worst. " Thank you so much to anyone who can help.
Uncertainty of living with Cirrhosis - British Liver Trust
Uncertainty of living with Cirrhosis
Well both are true. Cirrhosis is end stage liver disease (because it comes after all the others!) It is also terminal - but so is life. After we are born there’s only one certainty and that’s that we’ll die! The liver is, however, very forgiving - as I can attest. Mine had had a pummelling from overdoing alcohol. 100+ units per week for years. I was diagnosed with cirrhosis just over three years ago and was in hospital at the time. I’d been admitted with acute on chronic liver failure. My liver had finally called time after it had had a deep rooted infection thrown at it too! I was very lucky to be wheeled out of the hospital after that onslaught. It took some time to recover once they finally let me home, but I did. I’m well compensated with a child Pugh score of A5. My bloods are all normal, I take no medication and my last endoscopy showed no varices. I had 2 small ones at diagnosis. There were a couple of things I did which have saved my life….the first and most important was to knock alcohol on the head, I’ve not touched a drop in over 3 years and to be honest don’t miss it. No hangovers, no haze when I wake up, no forgetting the night before and who I need to apologise to and best of all I feel really well. I’ve more energy than I’ve had in years. The next two things I did were to follow a prescribed diet and listen to the professionals and ask them lots of questions. The final thing I did was to never give up and keep positive. Never once did I believe that I wouldn’t get well. I set goals and achieved them. Those goals were often small at the start…like being able to get into the bath unaided. Being able to walk to the end of the village. Being able to cook a meal. They’ve grown over time. I now work in a demanding job and run a couple of miles every day. You can do it too. Try not to worry what might be and focus on your immediate goals. Don’t set new ones until you’ve achieved the last lot and keep positive. Cirrhosis is only as serious as you allow it to be. Take care.
I'm sorry you are feeling down at the moment, and also sorry you are getting mixed messages from your specialist. This may partly be because they have to tell you all the possibilities, but now that you have been told the range could you perhaps have a discussion with your specialist and tell them what you want to focus on. If you do not function well with threats that you might only have x time left if you do not mend your ways, but prefer to be given something more positive to strive for (like a move to compensated) then tell them. I recently spent time in hospital with a bad case of pneumonia. Every single doctor who saw me said "don't worry, we can always put you on a ventilator". I think they supposed it would be encouraging that we were not out of treatment options but I found it objectionable and got quite angry with them, telling them I wanted to focus on getting better with the oxygen I was already having rather than the dubious "comfort" of the ventilator waiting round the corner.
As for a terminal condition - that does not say anything about how much time you may have left. The definition is, as far as I know, a condition which cannot be cured and which is likely to be the cause of your death. There is no time scale for that. The best thing you can do is to try to get as much enjoyment as you can out of every day and not fret too much about how long may be left. It was interesting to me that the mornings when you wake are the worst. Might it be possible for you to try to re-frame your thoughts on waking? After all, it means you have survived the night and have more time ahead of you. Have you any projects or activities you really enjoy doing that you could schedule into each day? So you have something definite to look forward to even among the daily grind. I realise this is all much easier said than done and wish you well.
Thank you so much, NieceByMarriage. What an awful experience for you when you had pneumonia. I'm so sorry. I tried your suggestion of re framing my thoughts in the early hours, and the more that I do it, the more successful it's becoming. Thank you so much. God Bless.
Hi I’m in my 12th year of the Cirrhosis diagnosis. Caused by excessive alcohol. I have been abstinent since diagnosis. Initially decompensated and compensated for years I take a book and pen and have a list of questions when I have my 6 monthly appointments
Focus on the present. Don’t look back. We can’t change the past but hopefully we all can have a decent life. I’m doing ok. I don’t have a perfect life but I’m still alive. Try and stay positive. I appreciate it’s not easy. But I wake up every morning and thank god that I’m still here another day.
People can live for years with cirrhosis so don’t let it depress you.
There are good and bad Drs and unfortunately I find there is a stigma. But hey ho, no one is perfect.
Keep battling and don’t let the bad days depress you.
Take care.
Thank you so much, Oscar21. Your reply has given me such a lift. It's so wonderful that you've been compensated for so long - something for me to aim for. I do tend to fixate on the past, and blame myself [quite rightly] for doing this to me and my family, even though they are so forgiving and say to just look forward. But it can be so hard to do this sometimes. Thank you once again for responding. God Bless.
I've had cirrhosis since 2004.. Still reasonably well apart from occasional lethargy and umbilical hernia.Medically I've been well managed by a very positive Consultant
Hi Porcupine_Tree. Wow! You sound like you are going so well! Thank you so much for sharing with me. God Bless.
Hi, Please try to stop worrying about it, I saw my Consultant last month to see how I have been getting on since my diagnosis over a year ago, I have been diagnosed with cirrhosis now from Fibrosis stage 3/4 ( it shocked me, has I can't understand why I've now got Cirrhosis) I've done everything by the book to slow it down.. But my Consultant was amazing he said " Don't worry, carry on doing what your doing, ie: diet, exercise " and the most important thing he said was I could live until my 90's and still die from something else. With him saying that, I walked out the hospital feeling positive, that was a month ago, and I'm getting on with my life and going to enjoy every minute. . Think positive and take care of yourself x
Hello, sorry you are having a low day. I can't really comment on your cirrhosis as I don't know the cause but can say what my husband was told. "if you carry on the way you are you will die in 18 months. But if you change and live a cleaner healthy life you will die with cirrhosis not from it". There are many reasons for cirrhosis but there are even more reasons to get better (or as well as you can) keep doing what you've been asked to do and things will change. It's slow but it does get easier. He was told this in 2021 and we have had two holidays abroad and his bloods are nearly normal. Take care x
Thank you so much, Oldbits. [I love your name, by the way....it gave me the giggles!] I loved what you said about 'if you change and live a cleaner healthy life you will die with cirrhosis not from it". This has given me such hope - thank you. It's lovely that you've been abroad, and that your husband's bloods are nearly normal. Something for me to aim for. God Bless.
Hubbie was assessed for transplant in 2021, UKELD 49 bilirubin in the100's and decompensated. Alcohol and AIH the cause (Turned down because of alcohol). It was a good 18 months from then till he was compensated. Not an easy time for any of us but with the small wins we got there and as he got stronger he coped better. Good and bad days, up and down but each day was a new start. Don't be too hard on yourself when you have a bad day, it happens. We made plans and said as soon as he was compensated we would go to Italy. That was 2 years after the assessment and we went in June 2023. Look after yourself x
Hi Puddy, I liken life with cirrhosis to a roller coaster - there will be up days and there will be down days and you have just got to ride it out. Make the most of good days and write off the bad ones. Eating well, exercising and keeping abstinent will hopefully give you more good days than bad. Also, try not to constantly dwell on the situation - find something else to occupy your mind and body.
Since practically day one of my hubbies diagnosis I have shared our story on here to hopefully provide some insight and maybe some inspiration. You can click on any members profile and look back at their previous posts and there are several there from our 'journey'.
Hubby was first diagnosed after bring hospitalized with a massive variceal bleed on 23rd April 2012 and in the past 12 years we've rode the roller coaster daily. We've had spectacular highlights of life in that time and sometimes the roller coaster has been a bit scary but we've rode it out.
It's only been the past 8 or so months that hubbies health really plummeted to bring us to where we are now (2 days post transplant). In the last 9 years he's made the absolute most of good days or less cr*p days and has lived his best life rekindling his love of walking although at much shorter distances than pre-illness. We have still managed some impressive hikes. Since lockdown he's taken up and really taken to cycling and we've done loads of cycling on both our manual and pedal assist e-mountain bikes - our e-bikes were new in 2021 and already have almost 2000 miles on them.
Apart from burst varices and Hepatic Encephalopathy hubby has thankfully avoided some of the other major symptoms of decompensated cirrhosis (although I can tick off many of those on the BLT cirrhosis page symptom list that he has had).
Towards the back end of last year the wheels fell off the roller coaster and he'd become poorly enough to require transplant and we are so greatful this is now happened and he is making progress post-op. Doctor and nurses are crediting his underlying fitness from pushing himself with his walking and cycling to how well things are moving. In the past 6 months he's barely spent many hours awake in the day so it's obviously the stored fitness that is coming into its own.
Stick with it, any advice from doctors follow, dietary advice follow. Get yourself as well as you can and hopefully you can live ages even with a dodgy liver and if down the tracks things once again go wrong then you have done what you can and tranplant might be a necessary option.
Ride the roller coaster, make the most of good days and learn to live your best life. They reckon people only learn to live when they find out they are dying and at the end of the day that is what is always going to be our trajectory from our first breathe it's all about living the time on between that's important. Hubbies motto for life even before he knew he was ill was "Life isn't a rehearsal you only get one go at it so grab every opportunity and live your best life possible!"
Katie ❤
Dear Puddy68 from reading all the incredibly helpful replies and the positive energy from those in this group I hope that you are feeling hugged and these people are a true inspiration those who have kicked the booze when it was needed those who are years into the journey and those of us newbys but what I read and hope you take from all of us is that its an opportunity to re focus and each day you can actually see how far you have come it's really the small things that matter, my hubby literally couldn't sit up on his own when he was in hospital let alone put one foot in front of the other, we are only 6 months into this but there is so much more hope now and I feel very very privelidged to have stumbled on this group it's been a real rollercoaster up to now and I know it will be but then I guess that's life I remember a doc telling me over 30 years ago ' it's like riding a dragon you can just let go and jump off at any time but better to face your fears and hang on and never give up and you will make it through' the body (and in particular it would seem the Liver) has an amazing way of 'healing' itself but it is your mind that will guide you it's ok to have off days it's ok to not feel ok sometimes that's how life rolls for most humans but there is always hope and always support and always better days as so many of these lovely people here have already said. Just know that you can do this and celebrate the wins however small they may seem they are honestly quite important and you can see from some of these real life stories everything is possible you just have to beleive. Big hug xx
What a lovely reply, MilliganHorse. Thank you so much. And yes, I well and truly feel hugged. I don't know what I would do if I hadn't found the warm, sharing and caring people of this group. I was really floundering mentally until I found you all - the "real life" advice, the messages of hope and the encouragement I receive from you all is just remarkable. And a big hug back to you, too. God Bless, and thank you.
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