FibroScan

[jeananderson123]

My fibroscan result was stiffness 66.5kP is that very bad. I am told I have cirrhosis and that there is nothing further that can be done. I am seeking the help of a nutritionist later in the week

[susieanna]

Hi, I know someone whose fibroscan score was 75! and they are still alive, about 3 yrs after the diagnosis of cirrhosis, so don't despair just yet . Have you seen a liver specialist yet?? Who told you that 'nothing further can be done'? Do you live in UK? What is the cause of your cirrhosis? If its alcohol, it could be the case that provided you cease to drink, your liver might stabilise. This can happen, as the cause is removed. It may depend on whether its compensated or decompensated cirrhosis. It may stabilise even with decompensated. But i think this will vary. Can you provide more details; have you had a ct scan of the liver yet? Perhaps you may need a transplant at some stage; i find it odd that someone just turns around and says 'nothing further can be done'

[jeananderson123 in reply to susieanna]

I have been in Spain for over a year now in and out of Hospital since unable to fly. I fell over my dog and was paralysed, they were looking for back problems then eventually found I had internal bleeding caused by two duodenal ulcers caused by taking anti inflamatories for 15 years prescribed by my GP. All was then infected pancreas, spleen, gall bladder. They removed ulcers and let me home to get well enough to have gall bladder out which I had done three months ago, that caused a hernia so I am waiting for that to be sorted now. The doctor sat there absolutely straight faced and said you have cirrhosis of the liver and many cysts and nothing can be done, it cannot be cured. She gave me 18 months. I have changed diet, lost three stone, stopped drinking and feel really good now. Talking to a nutrition expert on Friday to see if she can help. Haven't made it to England to have blood tests yet. Jean

[susieanna in reply to jeananderson123]

You poor thing! I thought Drs in Spain were meant to be quite good; don't sound all that helpful to me! You have done well though regarding changing your diet and stopping drinking; and you feel 'really good' which is a great positive sign. Try to get to see a Hepatologist if you can over there in Spain, who can look at things again and reassess you? xx

[Onesmallstep1969 in reply to jeananderson123]

Hi, Just want to say that no one should ever be told unpleasant news like that. It's mean. I want to share with you some info that you may already know. That is, drinking coffee can help you, even if you have cirrhosis. Those with cirrhosis who drink coffee tend to remain stable longer. I hope that you don't lose hope. You sound like such a lovely person. The very best of luck to you.

[Juamcc in reply to susieanna]

I had a fibroscan score of 38. I had to beg to get my results in hand and no one told me anything about it. I can't find much on the internet. But what i've read, it's more accurate than an ultra-sound. Just by reading posts here, I am learning more. I have autoimmune primary biliary cirrhosis but I am compensated. I don't eat store-bought boxed food of any kind nor any meat that's been put together. I just eat plain food.

[Millie09]

Hi jeananderson. My fibro score was 27 in Feb this yr .was my first ever one and I have has cirrhosis 9 years now.

What I have learnt on this forum is we are all different even though we all have liver problems caused through many ways. I was freaked out about my fibroscan results at first but I now know this can change. It can be raised by medication and diet that was taken on the day ,

My cirrhosis has declined a little , Iam.now living with mild hepatic encephalopathy of which I am on lactulose and I also have itchy skin of which I use a powder I was told of from someone here on the forum, my hepetologist gave me some last week the day before my gastroscopy and it was such a relief!! So please don't despair too much .speak to your consultant ( I take it your under a liver unit at a hospital) .have no alcohol at all, low salt diet , high protein, plenty of veg and good carbs. Hope all goes ok !

[Hidden]

Hi Jean,

It really would be a good idea to see a liver specialist and get more information and guidance about your diagnosis and test results.

You may find our publications 'Cirrhosis of the liver' and 'Diet and Liver disease' useful to read, here is the link to our publication page;

britishlivertrust.org.uk/pu...

Please note that they are general and all specific information should come from your own specialist.

With regards to diet, there are some special considerations that people with liver disease may need to make in their diet to stay nutritionally well and to help to manage their condition. Some of these are specific to certain liver diseases, others relate to how advanced the liver disease is.

It would be advisable to obtain specialist dietary advice from your liver specialist in the first instance, they can also refer you on to a hospital registered dietitian for more information.

We hope that is helpful,

Best wishes,

Rebecca

[Rach1244]

Hi Jean I'm in the US. I was diagnosed with cirrhosis Jan 2016. I was very sick recites bleeding jaundiced my meld score was 28. I even got c diff which resulted in a colostomy and me getting a bag. I'm 45 I got pneumonia and couldn't walk for more months in a wheelchair my fibrocan was 63. The were talking about palliative care. Now my meld is 8. I have no symptoms I walk 2 miles a day. And I'm getting the bag reversed Aug 1st The surgeons are cautious about doing the surgery I wouldn't lie but I want it done. I need to feel attractive again. I went for a consult yesterday for the surgery and they were surprised I looked fine for what ive been through. I'm disappointed to hear what the doctors told you. I joined this site because It thought Europe was forward thinking with clinical trials. My nephrologist okayed me for the surgery she said my blood work is normal and I may never need a liver transplant. I saw another nephrologist.a nd she said the same. I saw caliber transplant surgeon and he said my liver is obviously damaged and ill probably need a transplant but who knows when he said could be ten years. I'm not a big god person I wish I was. But I wouldn't give up just yet I almost died twice one from pneumonia and one from the emergency surgery. I looked terrible and wanted to die now I m doing normal stuff. Just don't drink even if tempted.

[Millie09 in reply to Rach1244]

Wow rach1244. What a rollercoaster of a ride !! But my god it's amazing to see you have come through it .such an inspiring post! I'm so so pleased for you !! 😊. I am in a similar position, was given 6 months if that to live in 2008 , I'm still here, yes there have been talks recently of transplant as thats my on my way forward now .but so far my liver is keeping up well so to speak apart from the lethargy and mild hepatic encephalopathy I do try to carry on as normal.

So mean please don't give up hope.. my best wishes..linda 😊

[Rach1244 in reply to Millie09]

Thanks Linda. Sometimes I do get down and stuff. But hearing you are living for since 2008 does give me hope. Actually I do feel fine. It's only when I read what I went through it comes back to me. I even left out other things like bleeds and I couldn't swAllow solid foods for two months. I see why I get startling results from doctors now when they read my records. Honestly I just want to think positive again and live my life as normal as I can.

[Millie09 in reply to Rach1244]

Your welcome rach , oh I think most of us have our down days , I know I do

That's awful, not even being able to swallow would have put me in panic mode. I honestly sometimes ask myself how I have been living with cirrhosis 9 yrs ; mine was alcohol related. I remained sober and went back to work 2 months after discharge from hospital. Part time to start with as I was only 6st in weight from the ascites and malnutrition.

I did pick up again after looking after my dad for 16months with cancer of the lung, which then went to the brain. I just didn't want to be here anymore as he was my rock .I was then admitted back in 2014 with ascites and with the help of Aquarius I slowly came off the booze and cbt therapy has helped so much with learning how to cope with things

I had my only ever second gastroscopy last Friday🤢. I was sedated but never worked on me so I was wide awake. Bloody awful it was but good news they did not find any varices.

You have done Amazing! and you live life to the full as much as you can. ☺.

[Hidden]

hi jean,my first fibro scan was 75 in december 2014 doesn't go any higher,had it repeated in February of this year and the score was 13-4,,the first time I had it done I was drinking and dependent on it,since the detox after the first result I have remained sober and my varices have also disappeared and the liver is compensated and stable and the blood is now going through the liver,all down to staying sober(A/A) and of course Hepatology team at st Marys Paddington,as you know the liver is a remarkable organ,there is always hope jean,keep on doing what you are doing and the very best of luck with the nutritional side,hearing your story we are so blessed in this country with are wonderful NHS,and the people on this site are full of knowledge,keep fighting on ,😊,all the best Tony

[angelalucianaallen in reply to Hidden]

So did the cirrohsis reverse?