I have been posting many questions on here which I have found extremely useful with the replies I have received.
I'm not sure if I am just being stupidly naive or I just don't seem to have a doctor that give me enough information I was diagnosed with cirrhosis in 2014 following years of alcohol abuse. I was not through biopsy but through my condition at the time, Blood results off the scale, ascities, varical bleed, fever, jaundice you name it and my liver scans where my liver is showing scaring and is enlarged
These days I live in normal and fulfilling life and feel well in myself I have not had a drink since I was diagnosed
I seem to be unaware of the real impact of cirrhosis on my life. Apart from the fact that I am no longer able to have children due to it
when I asked my doctor any questions around how my life will be affected, a prognosis, life expectancy I don't seem to be given any definitive answer, more along the lines of if I never drink again it shouldn't get any worse am I wrong in thinking that potentially I can live a long and happy life without it getting worse or transplant.
Maybe I am being naive I don't know?!
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Miss_C78
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You are very lucky in that following the stage where your liver was in a decompensated state (as indicated by your symptoms) it has now gone into a compensated state. This is the 'how long is a peice of string?' question because no one and not even a top liver specialist will be able to say if your liver will go decompensated again or remain stable.
Staying off the booze, living healthily, exercising and eating a good diet will all improve your chances of a normal life span - my hubby's consultant has always told us that he is treating patients who have had a cirrhosis diagnosis for 20+ years and still doing 'ok'.
My hubby presented with a massive variceal bleed in April 2012 and was diagnosed with cirrhosis due to Auto-Immune Liver Disease, he was assessed and listed for transplant June 2014 but delisted May 2015 after an improvement in his condition meant he no longer met the criteria for transplant (not poorly enough).
Keep doing what you are doing because something is obviously working for you to have changed around from such serious and what might be described as fairly end stage symptoms in 2014.
Make sure you are being monitored though because cirrhosis is generally regarded as a progressive and irreverisble condition so you need to be having 6 monthly ultrasound scans to check for any nasties in the liver (cirrhotic tissue is a breeding ground for liver cancers), also for any blockages or pressure in the portal vein together with any signs of fluid build up. You should be seeing a consultant roughly 6 monthly and having blood tests because your liver could possibly flip again into a decompensated state.
My hubby sees consultants (2 different ones) 3 months apart plus has blood tests, endoscopies, ultrasound scans and at home I have to monitor his bowel habit, diet, fluid intake and weight to keep an eye on any signs of deterioration - he has fatigue symptoms and confusion/memory difficulties due to mild HE. No ascites, no jaundice, currently no varices (42 banded to eradicate them).
Anyway, look after yourself and don't be tempted (because you feel reasonable) to go back to any drinking because that will surely lead you towards liver failure & if transplant becomes a necessary treatment alcohol abstinence is 100% required.
After 5 detoxes, dying nearly 3 times and losing my partner to drink I now work in recovery and there is no possibility or desire to drink again.
I have 6 monthly consultant checkups, endoscopy's and scan did have repeat banding in Jan this year to this seems so far to be the most risk to me at the moment. Back in 2014 I had Gamma readings in the 2000's (now 45) and bilirubin of 484 now 29 although a month ago was 16😁 (was concerned that this had raised marginally). My INR now 1.2 and platelets still low but all other results at the mo are good so I have Meld score of 10 at present .
My consultant was is referring me to Kings due to an enquiry into pregnancy treatment possibility or whether it's too risky as she feels it's unfair to say definitively no with her level of experience which I thought was good considering I thought it would be a straight no.
Anyway thanks for your response it's really helpful. I eat to much sugar and have a slightly high BMI but I know I need to work on this 😊
Depending on which stage of cirrhosis you are at will depend on your future outlook. There are three stages of cirrhosis. If we take them as 1,2, and 3, with one being the mildest and three being the most severe. At stage 1 and 2 the liver can still have a chance of recuperating and not degenerate any further if you don't drink, eat a good diet and take supplements like vitamins and thiamine.
Bad cases of stage 2 and 3 mean the scarring is too much and the liver will fail in time and you can generally only survive with a liver transplant. Your liver enlarged is a slight positive as end stage cirrhosis results in your liver getting smaller as it shrivels up and fails. However if you keep an eye on it and do the right things then you might avoid a transplant and it may regenerate. But watch closely as I had the same and did what you've been told and unfortunately it worsened and they only noticed it in the nick of time to save me.
But keep at and hope everything turns out well for you.
Thanks my consultant said the same to me about the size she seems so reluctant to give an explanation about the damage itself, how can I find out categorically what stage in at? Thanks
That was my point earlier, your consultant probably isn't reluctant to give an explanation she probably can't.
Like I said it is a 'how long is a peice of string?' type question. My hubby's liver has always been described as shrivelled and shrunken yet his blood results are next to normal, he has no ascites, jaundice or any of those symptoms. He has mild HE and chronic fatigue but he has gained weight and muscle in last couple of years & all docs say he is doing well.
There is a new scan called a MULTI-SCAN which is on trial at the moment and several members of this forum have taken part in the research at Oxford. It combines the technology of Fibroscan and MRI scan and gives a colour picture of the state of your liver - I believe in traffic light colours so it shows which bits are ok, which bits are fibrotic and which bits are cirrhotic. It sounds an amazing piece of kit and I do hope it eventually goes further afield because we too would love to know how badly damaged hubbies liver actually is.
How can he go from being in need of a transplant and 10 months later completely normal bloods, weight and muscle gain and off the list? No one has ever been able to tell us what the future holds, we just live the best life we can and having spent 10 months on the the transplant list living at the end of a phone we are now absolutely making the most of our renewed freedom and the better days. Hubby is obviously still very much affected by his illness but we make the best of it, he might never get worse or overnight he could suddenly deteriorate - we just trust that all the monitoring and tests pick up if that is happening.
It is frustrating, but you seem to be doing good, live your life! Your consultant doesn't have a crystal ball and can't see into the future so live for now - none of us know what is around the corner for us.
The only way to positively tell how badly scarred it is definitively is a biopsy. However they only tend to do that if they are not sure where it's at. If the bloods and scans are not too bad they will continue monitoring through blood, scans, endoscopys, etc... Likewise if they are sure from the tests etc... That it is real bad they will skip the biopsy as they already know it won't recover and start considering transplant options. So it sounds like they are confident that they can keep an eye on it without a biopsy for now. Real bad scarring leads to the liver starting to shrink which they can see on the scans.
My heptologist on my first visit examined my finger nails, looked at my skin and eyes, felt my liver region and after 4 minutes said I had 9 months to live. Nothing else. I thought he was mental. He was accurate to within 48 hours. I never had a biopsy and he was able to tell me at every stage exactly what was happening and would happen just from my bloods, scans and looking at me. Very few want to alarm people or make themselves liable by giving a concrete diagnosis and to be fair sometimes they generally can't tell until things start getting real bad.
Don't panic too much if they don't or can't identify how badly scarred it is, they will definitely tell you when it worsens when it happens. Just keep monitoring it.
Sorry what! He said you had 9 months and was within 48 hours? Do you mean you got a transplant within 48 hours?
If so that's some impressive diagnosis however not common. I was told it would be 5 to 8 years before I needed transplant. I got away with 15 years. I thinks it's common that predictions are not accurate, and that's why consultants are reluctant to give them.
Yeah I was failing real bad and my compatibility factors were difficult and I was 7th on the list. Last minute they bumped me up the list and when they took out the liver and did a biopsy on it they said I would have had at most 48 hours left before complete failure and death. I don't know if he had a lucky guess and I'm sure it's not possible to be that accurate but it just turned out to be 48 hours short of 9 months to the day that he told me. Either way glad of the result 😊
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