Hi Everyone. I have yet another question[s] [I'm sorry!] I just read a post from 6 years ago that gave me a bit of a fright, and I'm wondering if anyone has any thoughts or advice on this?
The post stated that cirrhosis patients can do "remarkably well provided they can keep clean, & early stage cirrhosis (if he is in fact early stage) can usually be stabilized and managed well for 10 years or more before you need to start thinking about a transplant."
Does this mean that you only have a good prognosis if the cirrhosis is caught early? [I thought that even if you're decompensated, you can revert to compensated by going all of the right things?]
Does this also mean that even if you're doing well/compensated, that you'll eventually have to have a transplant anyway?
The post also said that "Maximum Medical Improvement" usually occurs in 6 to 12 months. I thought that it could take quite a long time to stabilise your liver and see improvements.
I'm so sorry to bother you all again......it seems that once I'm feeling settled/starting to get my head around this condition, I read something else that will get my anxiety started again.
Thank you all so much.
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puddy68
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You are sweating this too much - no one knows what the future holds. You could get hit by a bus tomorrow! Somehow you need to put the cirrhosis diagnosis out of your mind and just concentrate on living each day as it comes.
I personally know of folks with cirrhosis who have had it for 20-30 yesrs who are not transplant needy.
Ok my hubby has hit 12 years and needed t/p but there was nothing we could do to treat his or no ongoing attack we could stop in his case. Major damage was done before we even knew he had it (some form of auto immune issue). He went from an initial decompensated start in 2012, recompensated by 2014/15. Lived the next 9 years to the max and sadly has deteriorated to the point of being transplant needy and transplanted.
No one can accurately give any cirrhosis patient any clear prognosis as there are too many variables. All you can do is look after yourself the best you can, Let doctors deal with any symptoms or side effects that crop up and make the absolute best of the days you have - don"t waste valuable time dwelling on the 'what ifs'.
Thank you so much once again, Katie. You're absolutely right, I am sweating this too much. Thank you for your post, I really needed to hear your wise words. Congratulations on all of the positive news regarding your husband, too. God Bless you both.
Please do have a read through my old threads and see how our journey panned out and how hubby (after an initial period of what they labelled adjustment depression) learned to get on and live his best life possible - walking, cycling, hill climbing, travelling. It is possible to live a decent life even with such a serious illness especially when you don't let it beat you.
It is early days for you and you are yet in that shock phase - adjustment depression is like a kind of grief where you go through various phases but you will hopefully work through it and gsve better days, years. Don't let it consume your every waking hour.
Thank you again, Katie. I most certainly will read through your old threads - thank you. It is definitely interesting to hear about adjustment depression and what it entails. As a person prone to depression and anxiety, I can definitely relate to it, and it actually helps to recognise what I'm going through at the moment. God Bless.
I used to worry about how long I had to live when I was first diagnosed. I also made the fatal mistake (pardon the pun) of doing a Google search on life expectancy! If I’d believed what that search threw up I’d have been firmly 6 foot under by now! The honest answer with a damaged liver is to do all the things you can to help it - so keep away from alcohol, eat the advised diet and exercise. Then let it do the rest - it’s a pretty resilient organ and has a remarkable ability to regenerate even when badly damaged. I went from acute on chronic liver failure to well compensated and stable in less than a year. I’ve maintained that stability over the last couple of years. My consultant tells me this is quite common…..and as long as I continue to help myself then he sees no reason why it shouldn’t remain that way. I’m free of symptoms and feel really well. I really would take one day at a time and as Katie advised above, put your diagnosis out of your mind. As time goes on, you will get more confident in doing this. I very rarely think about my cirrhosis these days. I’ve got used to my diet - really enjoy it. Fortunately for me I don’t miss alcohol at all. I’ve learnt much healthier ways to relax. I also enjoy my exercise - which in turn helps with my relaxation. It’s a new, healthier lifestyle and my liver has repaid my kindness to it by allowing me to have a full and busy life.
Thank you so much, Aotea. What you have written makes so much sense, and your words are so encouraging. It's so fantastic that you went from chronic liver failure to well compensated in less than a year. You must have worked so hard to do this. You and Katie are spot on - I really need to try to put my diagnosis out of my mind. I can't wait until the time where I can actually go a few days without thinking about my cirrhosis. I think you're right, keeping busy is key. God Bless.
I am in the same boat as you puddy68. I just got diagnosed this past April. I am 42. Never have been a drinker. I have compensated cirrohiss. Just trying to make sense of how all this happened and looking for hope. My labs are all normal except for my platelets. They were slightly lower which lead to finding this diagnosis. I feel great. Am trying to loose weight. I have gotten back into exercising. I’m just looking for hope as well and trying to wrap my head around this.
Hi eblessed. Thank you so much for your reply - it definitely sounds like they caught your condition early, which is fantastic. I would be SO happy if my platelets were the only thing coming back as slightly low, and the rest of my bloods were normal. It sounds like your liver is compensating really well. As far as getting your head around this, I'll be totally honest - I have an anxiety disorder, and have been obsessing about the whole thing for quite a few weeks, but even for me, I feel like I'm stating to cope a little better. Read the posts on this forum, as the majority are really positive and uplifting. Please feel free to reach out whenever you need to. God Bless.
There are so many people walking around today with cirrhosis and unaware. Living life doing damage unknowingly.
The positive is you know so can halt the damage. You never know what medicine can provide in the ways of help in the future.
Like others have said. If you know why this has happened ( source) such as myself in a lot of ways I feel fortunate.
I can do something about that. Healthy living is in my control, so I’ll do that.
We all know people who have fallen ill and not had long left. My best friend 15 years ago had a sore back, had a scan and was told he had 3 months left at 32years old. He lived 2 days over this. Anything can happen.
Control and make positive changes. You can’t do anything about the other things.
Ask your consultant questions, be aware of what red flags are. Live life, my understanding is the majority of people in the past were diagnosed later in life, so the likelihood of living long wasn’t high. Hence the life expectancy average sitting where it is. In 1 year since my diagnosis this average has changed from 12 years to 20 for expectancy online.
My point is things change, care improves, knowledge improves, they’ve found a drug recently in the states which has the chance of reducing scarring.
Use this diagnosis to make a reason to make a positive change to your life. I’ve had people come up to me and say how well I’m looking, nobody knows I have cirrhosis.
I feel great, and to be honest being diagnosed potentially saved my life. I’m determined to reverse it( although I know almost impossible) but people have and people in worse shape than I was in. That only works by good change. Including the mindset.
As you start to feel more like you. The mind follows, I know where you are, I’ve been there. I honestly think by getting a plan set out and set little goals, momentum changes for the better.
Hi Dave....thanks so much for your reply. I've actually never thought about what you've said, that so many people are walking around, unaware that they have cirrhosis. Like you said, at least we know, so can make the necessary changes. Thank you also for your advice, and your positive mindset. I find it really uplifting. Thanks again. God Bless.
Hi puddy Bless you , I too used to ask similar questions when I was first diagnosed with end stage cirrhosis back in 2008 , my prognosis was not good ,6 months left.. yet with the hard work from the NHS, my imput and taking heed what my hepatologist/ gastro team advised me to do I'm still here
16 yrs later , mine was due to alcohol which I knocked on the head , healthy eating ,upping my protein back then amd on protein drinks .
I'm now eating healthy , taking as good care of myself as possible, just come back from my first holiday abroad for 11yrs , going to morroco in September and back to fuertevenura next year ..all booked up and so looking forward to it
Life expectancy no one knows puddy, even my hepatologist don't know so I just do my best to look after myself and get on with living.
My advice would be to try and stop the negative thoughts and stop worrying. I appreciate it’s not easy, but things will fall into place
I was diagnosed in latter stage. Decompensated. I initially visited the GP because I had fur like coating on my tongue. Initially was told I had dental problems annd had dental surgery anlthough the fur tongue remained. My GP anrraned blood tests on the Friday morning and 10,10 pm tht night the oin call Dr rang me and said he was arranging an ambulance as my blood tests were shocking. And I was in grave danger of bleeding to death. I was so shocked. I didn’t even feel ill. And the A n E dept said they couldn’t locate any results on their computer. So sent me home. The nxt day I was scared as had a slight nose bleed and was re admitted. Informed I needed to cease drinking and was discharged on the Monday.
A few wks later I developed ascites. And Thts when my whole world fell apart. Diagnosed with end stage liver cirrhosis. Decompensated. And told it would be 50/50 whether I would still be here in 6 months. And if I did survive 6 months it would be another 50/50 if I would survive this too.
Wow What a shock
And from there, my fight for life began. I gave myself a good kick up the backside and vowed to never drink again. And 12 years on I have kept this promise to myself.
I felt as though I was at the bottom of a mountain path and I have had to crawl on my hands and knees to get further up the mountain. It took me 18 months to start to see any improvement. I will never get to the summit but I am compensated child Pugh A. The liver is very forgiving. Trust your medical team and ask loads of questions. I do.
Try not to Google. I only come on here and go on the NHS website.
I have done well that I no longer see a Hepatologist. I just see the liver nurses which I am happy with.
I love life. I am still around to see my Grandson grow up and he has been my inspiration.
If I want a bag of crisps or bar of chocolate then I have one. I’m not going to worry either. The good Lord sees everything and when our time is up, he will take us.
Thanks so much, Oscar21. What you have written is truly remarkable. Your perseverance is truly inspirational to me [and I'm not just saying that - I really mean it]. And you are so right when you say that "The good Lord sees everything and when our time is up, he will take us'. As a Christian I guess I'm not setting a very good example - I give my problems and worries to Our Lord through prayer, then I just keep on worrying. It's ridiculous. I need to take my worries to Our Lord and let Him guide me, and do the very best with the knowledge I have to make healthy changes in my life. Thank you, Oscar21.
Thank you Oscar for your kind words Yes ! Exactly , I too wished I had known this forum existed a long time ago ,but it is what it is and we count ourselves extremely lucky
It's easier to say than do... but please don't google. Every person is different and every out come. It's a mindset... change of life style, healthy good diet and exercise helps the body and mind. It's such a big diagnoses and hard to accept, but as been said already there are a lot of people with cirrhosis and don't know so can't do anything to help themselves. You've been given a 'heads up' and a chance to help yourself. The liver is an amazing organ, it takes time to repair, look after it. You will be monitored for the rest of your life , which you can look at as a positive. My hubbie thinks he's so lucky to have the NHS keeping an eye on him. Take a deep breath, plan for the future. Xx
Thanks again, Oldbits. You are so right, I need to look ay my diagnosis as a positive, as I now have the chance to look after myself properly. God Bless.
Hi, read a few of your posts lately. Thanks for sharing your experience.
I am new to liver issues , started with problems 6 months ago so im no way long term experience to offer any great advice but all I can say is that I too have read lots about how you can make improvements and also the less positive situations and outcomes. You can literally drive yourself mad with it.
I don’t think there’s a definitive answer as everyone’s different but all you can do is try your best, what’s the alternative?
I appreciate your looking for answers and storey that may promote hope but also they can cause slot of anxiety which can’t be good.
Focus on you and try to avoid the negetive stories if your finding it hard to read and hopefully in time you’ll be the one writing a positive story for someone in your position to read and they will take strength from your post
Alternatively read posts on the day you’re feeling strong and on a positive day.
Hi Lukeliver. Thank you so much for your reply. And thank you for sharing your story, I really appreciate it. And it's a great idea to read stories on my positive days. All the best to you, too, and good luck with your recovery. God Bless.
Sometimes people can over think things, and of course if you're a worrier type of person things may set your mind off running at 100 mph, I was a chronic alcoholic, but never paid attention by the medical side of things , I've had drying out sessions, been hospitalised with various drink related problems, and even went to the nearest pub after being discharged from hospital with a ulcers in my duodenum, perhaps I was care free or didn't care about the damage the drink was causing. I recently had a scan and I suppose after being sober for 12 + years I expected some sign of damage, the result was an unremarkable view and no issues on the horizon regarding my liver, I'm more concerned about the other things that are highlighted, but not drink related, even now I'm taking things in my stride until a different scan is organised, so try not to worry, enjoy your life, and if you stay free from alcohol I'm sure you'll find life is so much easier, best of luck!
Thank you so much, Cb1963. It's so great that your liver has no issues. In regards to your other health issues, I think it's fantastic that you take things in your stride. I so wish I could be more like you. God Bless.
The lasting legacy from drinking is the constant pins and needles and burning sensations in my feet and hands, neuropathy, that's something that hasn't gone away, nerve damage, acceptance is a part of trying to live with this condition, it's a reminder to never drink again, thanks for your reply 👍
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