My Fibroscan results.: Hi I'm 34 and had... - British Liver Trust

British Liver Trust
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My Fibroscan results.

acjb007
acjb007

Hi I'm 34 and had a very serious drink problem which ended up with me suffering ruptured varices and I was vomiting blood. I was rushed to hospital and thank god after 2 very tough and painful weeks I was allowed to leave. If I ever drank again it would result in death.

2 years later after tests, scans, endoscopys and a biopsy I've not touched a drop. I now have savings, got promoted at work got my confidence back to drive again and life couldn't be better.

I went for a check up yesterday and the doctor suggested I use the new fibroscan machine. After a very nervous wait she gave me my results. I was told the highest and worst score you can get is 75. My result is 75! She said I'm suffering with terminal liver disease. She said my liver over the next few months/years will have many issues like cancer, more ruptured varices, other organ failure and I will need a transplant. I'm absolutely devastated. I haven't confided in anyone as I know I've basically done it to myself. It's not a case of if, it's when and what will go wrong. I'm revaluating my life and any long term life goals are no longer a dream.

20 Replies
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Hi acjb. My message to you is think positive. Do what you can: continue to abstain from alcohol obviously; eat well as you can & exercise.

You can live for many, many years with symptoms of "liver failure" and then of course there may be the possibility of a liver transplant further down the line if and when that time comes :)

Can't comment on the Fibroscan numbers: I've been having symptoms for the last three years, I'm now 99.9% sure it's serious liver damage, but nobody is telling me that. I hope to have a Fibroscan at the next BLT roadshow. I'm 43 by the way, with two young children of 3 and 4 to think about. So a negative outlook is not an option.

Be positive & if you can't do that from within, go see your GP voicing your concerns, he/she may perscribe liver-friendly anti-depressant medication for instance.

Good luck & don't give in!!

regards, Tim :)

acjb007
acjb007 in reply to Avux99

Thanks Tim. You should find somewhere that has a fibroscan machine. I had to wait 2yrs before my hospital got one but it's the most accurate analysis of your liver. My biopsy revealed cyrossis but not to what extent. I'm already on antidepressants and I am a positive person. Part of me is pretending it's not happening. When I was in hospital they thought I'd die and 2yrs later I'm still here. Just shows how they can get stuff wrong. Good luck with your journey and I hope you find your answers. Aaron

Hidden
Hidden in reply to acjb007

god bless you. how much were you drinking? im 39 and am now terrified o]f what i have done to myself, had very bad hang overs that last a week if i do drink, i now think that it is actually my liver talking to me. i havent drunk for 4 months now and never will again

Hidden
Hidden in reply to Avux99

hi time

im having similar thoughts as you, i was a pretty heaving drinker for around 10 years, actually worse the last 5, about 4-5 bottles of wine a week. i had a heavy weekend 4 months ago and will ill, i think it was a mild case of alcoholic hepatits.. I have had a liver function test 3 weeks after the binge and it was normal. im struggling to get a ultra sound out of them, but i should get one in about 3 weeks. i am a mess, im on beta blockers and currently off work, i cant face the world etc.

ive been phoning around for a fibroscan even prepared to pay, alot of nhs hospitals now have them, but i think they are for the hepatitis wards and are usually a portable machine. after my ultra sound im going to try go the hepatitisward and have chat with them

acjb007
acjb007 in reply to Hidden

5 bottles of wine a week isn't too bad if spread out evenly. I used to get through 15 a week, 2 a night!

Hidden
Hidden in reply to acjb007

im pretty small, usually 2 sessions of 2 bottles a week. 15 is quite alot, my uncle has done that for years 2 a night. im getting an ultra sound soon, did you have and did it find anything?

Cobwebs
Cobwebs in reply to acjb007

You were clearly a lightweight! Good luck. Life has its ups and downs. Make yours be an up and be kind to yourself.

Hidden
Hidden

You Keep your dreams alive, All of them! And let us all hope you get your transplant.

Don't give way to depression you have come thus far to change your life.

I wish you all the best.

The first fibro scan that I had showed a high reading like yours I was asked to go in again the following day with a different operator and the readings on that time were pretty normal.

I then moved to London and have had a further 2 readings done and they are normal.

I was told that sometimes with the fibro scan it is easy to miss the target.

if I was you I would ask for another scan with a different operator and then compare the readings don't just take the first reading as being the right result.

Good luck

Splodge60
Splodge60 in reply to lanceslot1

Very interesting and very relevant to all with liver disease.

Hi I have just read your post and just wanted to reply and say how fantastic you have done to 'change your life' to such an extent.....You really have done so well to turn your life around and never-ever lose site of that!!!! Congratulations ( I do not know if you have got help in that dept i.e A.A or somewhere like that - but if so make sure you keep in touch with them, or if you find yourself 'sinking' a little-get in touch with them-as you are most certainly 'inspirational')

I do not know much about Fibroscans but judging from the above comments by people that do, do not go on just that ONE result......some results are misleading.

Once again WELL DONE-you have come this far-keep on climbing!!! Good Luck xx

Hi again Aaron. You say you had a biopsy that revealed cirrhosis but not to what extent?

I've not had a biopsy, but if they are actually looking at a slice of your liver under a microscope I'm not sure why they couldn't tell you what stage Cirrhosis you have after telling you that same sample revealed Cirrhosis?

Hidden
Hidden

i have heard few cases where high results have been reported that go against biopsy, although i think they are in 95% in agreement usually. What were your biopsy results? Get atleast another 3 fibroscan too try a different operator for sure

Thank you for all your kind words. My biopsy revealed cirrhosis but it was a small area of my liver whereas the fibroscan does a larger area which is more accurate. She did do 5 readings of the fibroscan and all were very high. I will ask my doctor for advice asap. I'm hoping they are wrong but after drinking 2 bottles of neat vodka a day for 2yrs plus wine when I went out I'm guessing my liver is pretty much wrecked. On reflection I'm very lucky to still be alive and not have any symptoms.

After I got cnfrmd abt cirrhotic. I started to gv time to my liver so that it may fight itself from scars tissues by having medication which were doing part job for him. Also accepts all beneficial natural resources like fruits,frreenvegetables, naturopath y,yoga.

Devoting more time for myself as now I've a direction definite to go.

What have done was not a mistake as I enjoyed my time while drinking alcohol, although biopsy says its cryptogenic. But i quit 3 years back.

what I've to be fight for long will surely interesting I believe

Oct2012 fibrosan was 75. As cite,swelling present.

Jan 2014 it was 45. No as cites and edemma.

strictly following prescription and diet.

Fibroscan as 32 tested last week.

Fab!

Hi glad you gave up alchohol, just do what you were doing be hopeful again and positive, I know its scary I've had the bleeding varices last year nearly resulting in death, and nearly gave up the fear was so strong of having another one, I to have regular endoscopys, still have grade 1 varices no banding as yet, but feel well so will continue to live without fear, like I was all last year that's no way to live, look after yourself eat properly the worse scenario may never happen, I to have regular six monthly scans to look for any changes but really it may never happen live your life, I know it will always be in the back of your mind, try not to let it control you. Keep well Angse

I'm very confused. My blood test results show my liver is functioning as normal yet my fibroscan results were terrible. Can your liver be damaged and scarred yet function normally?

AyrshireK
AyrshireK in reply to acjb007

Yes they can weirdly - LFT's are notorious for being ok even in very advanced liver disease - your liver can be compensated so doing most of the jobs it is intended to do. My hubby has advanced cirrhosis and was assessed for and accepted onto the transplant list in June but at the last clinic appointment we were told his bloods have now more or less normalised - only his bilirubin and albumin outwith normal range (and this only slightly) all others have improved (at the moment). This means that should they a current calculation of his UKELD score (i.e. the scoring system which sets the bar for transplant need) would currently mean he doesn't actually meet the criteria for transplant. So as it stands although listed for transplant they medics wouldn't be allowed to give him one at present and he's probably at the bottom of a very long list all down to an improvement in his bloods - his liver remains, small, shrivelled and shrunken and burned out - as two separate consultants have previously described it.

Just another of the dilemmas with the wonderful organ which is the liver. :)

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