Hi everyone, I'm a bit puzzled. I have reached the point of end stage liver disease starting with liver failure 10 years ago on my 40th and I have never, ever had a fibroscan. It has never been mentioned by the many hepatologists, I've had ultrasounds, ct, MRI. During my transplant appointments at Birmingham, not mentioned then either. It seems everyone wants one or has had one. Why is this?
Love to you all, julie xx
Hi Jules,
I had the same question for my Gastro! I too was curious as yes, it seemed that it was the norm for everyone to have Fibroscan on this site! He informed me I didn't need one as they knew the extent of the damage to my Liver from all of my scans etc etc. I never asked again, as with what they have on me is accurate.
Lots of love and hugs to you,
Kate xxx
I am in the US and my doctor noted a "mildly fatty liver" on an ultrasound.I was then referred to a hepatalogist who ordered a Fibroscan which showed a severely fatty liver. I was told ultrasounds are not nearly as precise as Fibroscans.
Hi, I think I'll sit on the fence on that one. My ultrasounds have proven correct
Best wishes to you
Julie xx
Please keep me updated Jules and hope it goes OK! x
Don't be worried about private messaging as it's a way of not losing touch. Many private message each other on here
Take care
julie
Hiya Jules,
Hope you’re keeping as well as you can.
I had a fibroscan shortly after diagnosis, to determine how far gone my liver was. The result was 75, and the nurse doing the scan seemed devastated, and even thought the machine was broken!! So, at that stage I had full cirrhosis.
I’m guessing with you that they have known that for some time. Certainly at the point we met it was obvious that your liver was damaged. A fibroscan wouldn’t have added anything to your treatment plan.
I only ever had the one, clearly after that reading they decided it was only ever destined for the bin!!!
Samantha says hi. We do think of you often.
Andy. Xxx
Hubby hasn't ever had one, his consultant at the liver unit has said there is absolutely no point in his case as we already know he has cirrhosis so a fibroscan would add absolutely nothing to the diagnosis. (Obviously diagnosed via very obvious symptoms, ultrasound, biopsy )
Locally our gastro has informed us there is only one machine in our health board area and for some unknown reason it is the blood borne virus's department and he can't access it for gastro/liver patients.
Katie
Hi Katie, I don't know if our health board have one. I doubt it as we haven't got a main hospital. I go to gwent for osteoporosis scan, north Wales as an inpatient and they have brand new MRI. They have a ct as well. My liver nurse deals in blood borne viruses so they may have one. I'm due pain clinic in carmarthen for my broken back, another health board 2 hour journey. I live in Powys, in the middle of Wales. Ct on my lungs due to atelectasis of left lung on Friday, Aberystwyth hospital again. Came out of shielding on 16th and needing oxygen I might get hospital transport without other patients sitting on top of me. Regards to you and hubby. I haven't been on here since the time you were considering leaving forum
Glad your still here, julie xx
I've never considered leaving the forum though I know others have. I am still very active on here. Keeping on keeping on as they say. Hubby never got an official shielding letter despite having no working spleen, being on steroids, cirrhosis, early diabetes etc. but thankfully as we live rural we still got out for wee walks and managed to get pretty regular supermarket delivery slots so managed ok. Have caught up with hospital appointments now - ultrasound was 11 months late, endoscopy, bloods done but no consultation now till February 2021 (if that goes ahead). Hubby and I just plodding on. Sadly I have to venture out into the big bad world this coming week - court citation in Glasgow that I can't get out of. Dreading having to go out and to the office etc as i've been home since early March too.
Katie
If they have already proven cirrhosis (End Stage Liver Disease) by other means, then there is no need for the fibroscan. It'll only tell them what they already know, lol.
I never had one either.
Exactly. I was decompensated in 1990 and recovered, going for 6 monthly ultrasounds and seeing hepatologist after that every 8 months. No fibroscan even then when my liver repaired itself to a point. Now I'm end stage.
Thanks, julie xx
The cirrhosis never went away though. If you were decompensated you already had end stage liver disease (F4/ cirrhosis/end stage are all the same thing and would have shown up as that on fibroscan). It may have stabilised i.e. compensated for a bit but it would still have shown cirrhosis as cirrhosis can never fully recover. I imagine your 6 monthly ultrasounds were still showing cirrhotic so a fibroscan would still have added nothing to your diagnosis. Same as my hubby, decompensated cirrhosis 2012, listed for t/p 2014, liver stabilised so delisted 2015, stable now, compensated at present and still very much cirrhotic.
Katie
how is your life being decompensated?cause me also i will be soon...You must be a very strong person.Learn me how to do this...cause i m down...
Hi, I'm sorry to here your situation, what's keeping the part of my liver, a small part which is decompensate is protein sachets called Aymes shake protein powder on prescription via my dietician, and liver nurse says protein like cheese, eggs, cottage cheese, chicken etc in small portions whether it be on toast or a sandwich but she said to have a bowl of cereal before bed to give the liver food so that your liver doesn't take nutrients from your muscles while you sleep. The liver trust would be delighted I'm sure to send you they're info on diet and liver disease. Keep in touch to let me know how you progress. Love julie x
Hi Jules, I was told that I didn't need one as by my ultrasound they could tell I have only about 23% liver left. I was confused too, as I thought a fibroscan was a more refined test.
Hi, thankyou as they could tell with ultrasound with me too. How are you coping with 23%. Have you been told like me that high protein diet is essential as is lactulose for HE. I refused lactulose for years until I became almost comatose and talking nonsense last month. Are you on transplant list as I'm not anymore.
Thanks, julie x
Hi Jules, I spent over 6 weeks in Bronglais Hospital after a relapse in Autumn of last year. The consultant talked about a transplant but subsequently the nurse I've seen does not seem at all keen, pointing out all the risks and not thinking I'm fit enough, although most of the time I look and feel fine. So I'm not on the list and cope as best I can- appetite can be a bit of a problem sometimes. No, don't take lactalose either but have it as standby.
What happened to the waiting list for you, if yo don't mind me asking?
All best wishes to you.
Hi Sally, what a coincidence, I was in for 3 weeks November under Dr Norrain, dr yow small Malaysian lovely dr and dr abraham very tall handsome. My nurse is Donna.. I was discharged from Birmingham as unfortunately I took an overdose but even before that they were very convinced i wouldn't survive the transplant. It's a small world, I'm in rhayader and going to aberystwyth tomorrow 10.30 for a CT on my lungs
Lovely to hear from you. If your nurse is donna she knows her stuff and will take care of you
Try to keep positive as it seems we are both trying
Julie xxxx
Hi Jules, yes I met them all. The handsome one 
I think was Egyptian. You must have been there when I was as I went in on 28th Oct. with liver failure, jaundice and ascites and discharged myself around 13th Dec. I was put on a Iltr a day fluid restriction which I found very hard and it didn't work.
Most of the time I was in my own room ac I got C. Diff. the severe tummy bug, probably because of the antibiotics given after a drain. At least I had a telly though
At the time we were living in temporary accommodation near Newcastle Emlyn. But now I'm in Cardiff and don't know if I'll be going back to West Wales.
I'm so sorry to hear about your troubles and hope you've got good support too.
Do stay in touch if you wish and again I wish you all the best x
Hi nice 2 hear from u again . Hope ur coping ok with the covid situation. Are u not able to have a transplant.
Hi I was diagnosed with cirrhosis at 34 or 35 when I had my first fibro scan and I scored the highest which I think is 75akp then they sent me again at 39 and I scored the same because the scores can differ each time you go I've know people who scored 40. And then 35 on there next 1 I am totally surprised that you haven't had 1 sooner considering your end stage cirrhosis as well .its a test that let's the doctor know how stiff the liver is I cant understand why there giving you 1 now when they already know how bad your liver is and how poorly you are well fingers cross it's for them to see how bad it actually is so they know if you'll be able to survive n operation for a transplant or to get your back fixed I really hope something positive comes out of it especially what you've gone through and still going through if anybody needs some luck its you jules your so brave and a true fighter .am sending you my love and always in my prayers x
Hi, no the message I sent said I've never had a fibroscan nor been offered one. Ultrasounds, ct, and 3 or 4 episodes of liver failure and organ failure last November and I was listed at Birmingham but they struck me off as unfortunately tried to commit suicide and they said before that I wouldn't survive transplant so doors closed xxx
Am so sorry jules I can relate 2 years after I was diagnosed i to tried to take my own life i was so depressed and scared plus am disabled because i had abscess on the spine which left me with paralysis and in a wheelchair I thought I was I a burden on everyone especially being diagnosed with cirrhosis so I took a load of morphine tablets and chewed them up which is fatal and washed them down with alcohol that night I had a row with my wife who was in bed I came home and fell asleep down stairs. My wife came down stairs and she noticed my hand was blue and then my face she rang an ambulance and they came and took over from my wife they gave me a needle that reverses the morphine I went into cardiac arrest I woke up in icu I hadn't got a clue only that if my wife had been 5 minutes later coming down the stairs I would of died but she kept resuscitating until the ambulance came that's when I went into cardiac arrest after this I had to speak with a doctor who gave me antidepressants and am glad I am still here and to have such a loving and precious wife who loves me as much as I love her .am glad I shared this story because having this disease gets you down and makes you worry about the future but to all the people who have read this and feels like giving up on life like me and jules even though I don't know jules story please don't give up as hard as life can be take each day as a blessing and not a curse xxx
Thankyou so much for sharing your story which is so, so similar to mine, even the overdose method was the same with same drug. I thank you for taking the stigma out of being in utter despair. I too have to be taken out in a wheelchair and spend a lot of time thinking what could have been. All my life I've spent in loveless violent relationships the last being for 20 years then I met the love of my life nearly 4 years ago, and I mourn for us not finding each other earlier, before I deteriorated further. I just take each day as it comes, have my disabled neighbours for phone chats, have 3 close friends who live all over the UK and have just employed a personal assistant who I've insured for my own car so I can see and do different things. Going to a supermarket instead of online tesco was a novelty last week. Going to a different town on Wednesday will be another adventure I used to take for granted. Broke my back in 5 places last year on holiday and while in hospital in July I broke it badly just putting my feet to the floor all due to osteoporosis due to anorexia in my 20s and 30s 5 times lowest weight 4 and a half stone so only myself to blame. You will be in my thoughts and can message me anytime, thankyou, with love to you and your wife
Julie xx
I think for most people if they know you have cirrhosis then in most cases they don't offer a fibroscan!
I asked for one and was told they know I have cirrhosis so why do a fibroscan !
Although I do think in people who can possibly have some reversal of cirrhosis it could be useful in finding out if there has been some progress!
Yes, it's worth a thought, but after the first failure the damage it did was catastrophic thus no fibre scan
Best wishes
Jules
I agree in reversal and I will do it! My fibroscan was 23.6! F4 starts 18.6! So am I being told my diagnosis of 5 over is irreparable damage! N0 I will not accept that, I am very fortunate that I have no symptoms all of this self inflicted disease at all ( truly blessed) completely TTotal and no desire to touch alcaholic again! Everyone I don’t want to sound sanctimonious but I a a believer I can reverse this! Any thoughts please?
Breaks my heart to hear your news. I’m 16 months in from liver failure and had the whole world diagnosed. Did you not get offered transplant( silly question I suppose). What is end stage, I personally was told it’s not pretty by consultant. Surely they should be offering opportunity of transplant at this late stage? I hope end stage does not mean that for you Jules
David
Hi David, it seems every time I go to a hospital, currently for broken back, oh incidentally I could have had urgent surgery with pins and plates, but you guessed it, couldn't have that surgery due to liver, I always see some poor soul stood outside entrance, yellow and either bloated or skin and bone puffing on a cigarette, obviously in liver failure. I don't want to think about end and stage but I've been told that end is that the liver is struggling at a point of no return.
In one of my previous replies I spoke about me not being able to have a transplant.
Love jules
I have never had one pre transplant, I think they got everything they needed from the CT scans and bloods. post transplant my Liver Co-ordinator has suggested one, but I believe it is to check for bone density, as I believe some of the medications can cause bone weakness and possibly osteoporosis.
Stay safe🙏
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