Dear all,I know many of you are having a tough time and my thoughts are with you. I am a bit confused about a consultation I had on Saturday (of all days). In 2019 I was told I had cirrhosis and had maximum two years to live so from that day I stopped drinking and I was so lucky to be able to do it on my own. Since then I've had bloods taken & scans regularly. On Saturday I was told they were so pleased with my last scan they want to start weaning me off my tablets. So what does it mean? Did I have cirrhosis at all, I honestly thought I would be on medication for life.
Trust me I am not trying to upset anybody with this news but it could be a little bit of inspiration for light at the end of a very dark tunnel. I'm still unsure how I feel as it seems too good to be true and I've lived with the fear of passing daily over the last four years. At the moment I'm a bit lost.
Take care all of you, I'm sending a little bit of strength to you all xx
Written by
Furpal
To view profiles and participate in discussions please or .
It's possible that they just mean you have become stable with well compensated cirrhosis - I take it every 6 monthly scan since 2019 has confirmed cirrhosis.
What medications are you on that they are talking about taking you off? There are no meds for cirrhosis itself but for the symptoms that come along with it and if you are compensated then these side effect symptoms may not currently be an issue.
Your stated 2 year life expectancy would have been if you had done nothing to help your liver and since you stopped drinking and started looking after your health better it has 'reset your clock' so to speak. My hubbies original consultant always told us he had patients on his books who have had cirrhosis for 20+ years who were neither at deaths door nor needed transplant.
My hubby was stable for years between his initial decompensated cirrhosis diagnosis, listing and delisting for transplant in 2014 and back end of last year when sadly he deteriorated quickly leading to transplant 8 weeks ago.
Keep looking after yourself and your liver will hopefully keep going for a long time though you should still receive 6 monthly scans and bloods as minimum to look out for any potential changes.
Never feel guilty for sharing any good news however small, it does sound as if they think you are stable and that is why they want to reduce/ween off medication but for sure the more questions you ask the better informed you will be. My hubby was told he had to stop drinking and low salt diet when he got his diagnosis in January but he is on the transplant list, and on a number of different medications but they change depending on his blood results etc. I hope that you will take care of you and also continue doing whatever you have been doing to get to this point, you should pat yourself on the back for sure.
You are obviously doing something right to have turned your health around to the point where your doctors are looking at taking you off medication altogether so you should be applauded for that and indeed anyone who has had a positive upturn in their health like yourself should be thanked for sharing their real experiences which you have done. So well done you and thank you for sharing your story.
Don’t feel guilty as it does give others hope and shows that liver disease, although a serious health issue, especially cirrhosis, isn’t the be all and end all and definitely not the death sentence the likes of Google would have us all believe. Far from it in fact as many on here are demonstrating.
As for the 2 years to live thing, whoever told you that, they had no real right to tell you so because no-one knows and while I know some doctors will mention such things to try and coax people into stopping drinking if that’s the cause of their liver disease or to take their health more seriously, I’m sure it can do more harm than actual good and can bring on all kinds of anxiety. I’ve read stories of people who having been told they have x amount of time to live going back to drinking again thinking all hope is lost.
Sadly there is a lot of stigma and downright falsehoods, lies and negative headlines associated with liver disease of all types and stages, if you have cirrhosis it’s assumed you’re an alcoholic, if you’re an alcoholic it’s assumed you’re going to keep drinking and will die, if you have a fatty liver it’s assumed you’re fat and eat junk, if you have cirrhosis it’s assumed you will need a liver transplant and will die of cirrhosis unless you get one and so on and so on.
It is really only by those with actual liver disease documenting and sharing their own real life, real time experiences do we begin to see the truths and the reality where liver disease is concerned and with it all sides of the equation, the good and the bad and yes, the ugly as well. And when we do get to see the real full picture there is an abundance of hope, positivity and a massive reminder that hey, as long as you draw breath, you are still alive, kicking and fighting and aren’t dead yet and can still live a long and normal healthy life.
2 years they say? There are people on here who have well and truly smashed that falsehood and are disproving such timelines. Of course some will die and won’t make it sadly through whatever reason or cause, but then we all die someday, from something, if you have liver disease or cirrhosis it doesn’t have to be from it, far from it.
Thank you, it is so true what you say there is an awful lot of scare mongering out there and it was actually a consultant who said 18 mths to two years. The anxiety is horrendous but no one knows your body like you do and I really believe only you know what to do to help yourself.I appreciate your reply and for taking the time.
Don’t ever feel guilty. You have listened to the Drs and followed their advice. And have proved that by doing this, your life has been saved. Many of us have been where you’ve been. I was told it would be 50/50 whether I would survive 6 months and if I did, it would then still be 50/50 whether I would survive the next 6. And from that moment, the fight for life began.
I use this theory, I was at the bottom of a mountain and at times I’ve crawled back up. I’ll never reach the summit but, god willing, and never drinking alcohol again, after 12 years I am still alive and loving life.
That's really great positive news by stopping alcohol which was the cause of your liver disease your liver health has improved. Well done you 😍. If you are unsure about what it all means then please retalk to your consultant they are there to help in understanding your livers health it's alot to take in knowing you were on a path to an early death and now improving so well that life is before you again 😉 well done xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Fibroscan Today
Have diagnosis now
Fibroscan results - can someone help please?
Confused
New guy from Canada 
