Have you been having regular 6 monthly ultrasound scans as per the stipulated guidelines for monitoring cirrhosis and have they been confirmatory in showing cirrhosis?
What was your initial diagnosis of cirrhosis based on? Hopefully NOT just fibroscan which can report a false high result in cases of ongoing inflammation of the liver which might have been present if you had alcohol related hepatitis & now isn't a factor on your healthier lifestyle.
I think you 100% need clarification on your current diagnosis
Yes 6 monthly scans and switched to MRI for the last 3 ( fat belly🤣)Course ecotexture, normal size liver, patent blood flow, gall stones etc confirmed.
Also confirmed with a full private liver work up at the Royal Free 6 years ago but 6 months after quiting booze.
Had ELF 3 years ago and was just into the chirrotic range score.
well done for quitting the alcohol, it must have certainly made a difference to your wellbeing and blood tests , I haven’t got any answers , only to say that my husband was diagnosed with cirrhosis a while ago and has improved, he also has gallstones and a blocked bile duct , we took life insurance out with Staysure ( I think and will check) we declared everything and only cost around £350 for the year . We are currently and constantly keeping our fingers crossed as we are currently holidaying in Zante , take care
I think you have too much faith in single test like fibroscan which is very useful but not conclusive neither to rule in/ rule out cirrhosis or general fibrosis level. It is not that simple. You need more tests I think.
That's the point, over the 6 years the surveillance scan and blood tests have been done 12 times with no cause for concern. Only test I have not had is biopsy and my consultant said the risk of that outweighs the benifit.
Now with my KPA below the cirrhosis score it would be nice to lose the cirrhosis lable and might encourage others that reversal is possible.
It's certainly given me the hope needed to keep doing the right thing and stay off the booze.
Hey Roy, I was told by my specialist there was a 1% chance of reversing cirrhosis. My response was something along the lines of, “so you’re telling me there’s a chance”. Lol. This was after me saying there have been documented cases that I read in journals.
Prior to that I was told it’s not possible. From my understanding once you have cirrhosis repeat testing of the fibroscan is not necessary and doesn’t add or take away from the original diagnosis.
I am a firm believer that anything is possible. With that said, I think all other tests would need to indicate your liver has regenerated enough to put you back under f4. How that would be determined I don’t know. In the states they also avoid biopsy in favor of the mri with elastography. They say the same thing. The risks outweigh the benefits. Some specialists take it a step further and say the biopsy is no longer the gold standard, the mri with elastography is. Either way, job well done friend. It’s certainly promising news and I really hope your liver has performed a miracle for you. It’s worth drinking that coke.
I’m a few weeks from my 6 month check up (4th I believe) znd I always get on edge around this time.I’m 40 and was diagnosed with arld cirrhosis and my kpa was 18.7 or 18.9 with a meld of 6. Last check up my meld was at 10. I pray to God it’s back down to 6 because every time it goes up 1-2 points
Hi. Firstly wishing you all the luck in the world. Coming from someone In a similar position! I’m 2 yrs 4 months into this whole nightmare.
With regards to your health insurance. This is what my consultant told me on a Tuesday. My notes will always say history of liver cirrhosis BUT things have improved so much that he can provide a letter to any insurance company which stops them from upping premiums.
Because my levels are all normal, my US scans show slight patchy texture and I am otherwise fit and healthy my liver nurse said if I can get my fibroscan down under 12.9 I can be discharged! It’s currently at 14. My initial diagnosis came from a fibroscan also.
I’ve been declined for life insurance because I have Alpha 1 antitrypsin deficiency, and AIH/PBC crossover and I only have mild fibrosis. So I’d say play safe on insurance even if it costs a bit more. You don’t want to give insurers any excuse not to pay out if you need them to. However, you could ask an insurance broker for their advice - they would have experience of this.
Hi Roy. This is something I would like to know too. I was admitted a year ago for 5 weeks with alcoholic hepatitis with poor prognosis. Since then Ive had no alcohol, ate an healthy diet and exercised. My bloods are normal and fibrosis is F0-F1. I am not on any medication and just last week I had an ultrasound which is all good. Endoscopy not done since last August which showed stage 1 varices but Ive had no bleeding or problems. Ive just booked a holiday and declared everything but wondered, like you, at what point can I stop declaring this previous condition? I feel much better than I have in years and am sure Im much less of a risk than I was a couple of years ago.😀
From.an insurance point of view, as someone with plenty of experience with approving travel insurance claims, if your medical history mentions any kind of liver disease or it has in the past, always declare it or they would turn your claim down.
For the rest, I'm not experienced but best of luck!
My wife and I planned a holiday, but unfortunately before going our medical consultant advised my wife not to fly due to her varicose. Therefore on medical advice we had to cancel. We were insured under two policies as I insured my wife under single trip, where mine was an annual policy. On submitting a claim to recover my holiday costs I was refused on the following grounds:-
A close relative or close business associate or friend who is not travelling with you, a travelling companion not insured by this policy, or the person you are intending to stay with, may have an existing medical condition; even if it is considered as ‘stable’ or under control or in remission. Unfortunately, we are unable to provide cover for any claim arising as a result of an existing medical condition or any known or recognised complication of or caused by the existing medical condition of:a) a non-travelling close relative, close business associate or friend; or b) a travelling companion not insured by this policy; or c) the person you are intending to stay with
All of my wife's medical conditions were declared under her policy, but I did not believe it was necessary to declare my wife's condition under my predated policy.
I have assumed there is little I can do, but my situation may help others to check the small print under cancellations.
If we had NOT been given medical advice not to fly, I am bot sure what the situation would have been, if we had actually gone on holiday and my wife suffered a medical issue requiring her to be repatriated.
Hi Roy - no idea about legal declarations for insurance etc but to share my own case
fatty liver for 10 years - didn't deal with it - fibroscan 19.5 last September - F4 scarring and definitely cirrhosis - gave up teh demon drink and lost a lot of weight - 12.5 fibroscan in MArch - message from teh liver consultant is " still cirrhosis, now F3, if you maintain lifestyle changes etc etc score will come down further in time, if you get to F2 score (below 10 I think but its almost academic) then you can stop thinking of yourself as cirrhotic, you can expect not to get very ill anytime soon, but if you backtrack at all then you can expect to get irreversibly ill very quickly ". I am 61, and bloods like your own (my patelets are lower)
I believe that higher threshold KPA for Alcohol Cirrhosis is if you are actively drinking. I am not positive of this though, so maybe do some research on it.
I agree. From my understanding to get an accurate kpa the person should have already quit drinking. Otherwise your liver will be inflamed from alcohol and inflate the stiffness.
I can't remember the numbers but it was done about 3-4 years ago and was around 0.5 to1.00 above the fibrosis/cirrhosis cut off point.It confirmed the initial diagnosis.
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