I’m really scared, my kpa was really high , so was another percent score (not the cap …that was high and I expected that,) my question is if a person lives average 15 years with cirrhosis how can I tell how long I have had it, I might have had it ten years 😢 also when people reduce kpa what does that mean, I understand lowering the cap means lowering fat in the liver, but how can a kpa score drop below 7 , if cirrohisis can’t be cured, does it mean you still have cirrhosis but with normal figures, I really don’t understand 😢
scared : I’m really scared, my kpa was... - British Liver Trust
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Sophia1968
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Forget about any talk of supposed life expectancy due to cirrhosis, there is no one in the world who can predict that. My hubby is approaching 11 years in and is stable albeit with some symptoms. Hubbies consultant has frequently pointed out that he has patients on his books who have had cirrhosis for 20+ years and who are no where near deaths door or transplant needy.Lowering CAP is possible by - as you rightly say - reducing the fat in your liver. Reducing kPa can be achieved (to a degree) in you can stop the assault on the liver which can halt progression and even possibly reverse some of the damage done. Total reversal of cirrhosis is impossible but there is generally always some scope for improvement.
It'll be a case of learning to live with the condition without it totally dominating your every waking minute, doing all you can to stay as well as you can, being fully compliant with all monitoring and medical care and trying to live your best possible life.
It needn't be all doom and gloom.
Katie
Thanks Katie, is the median score how much percent is scarred, I will try to be positive, but it’s hard cos I’m one of those people who instead of biting the bullet when news is bad, I just lose heart xx
The fibroscan will have taken 10 reading across the liver and the median kPa figure is the middle one/mid-point between the lowest and the highest readings (the spread of figures i.e. lowest to highest is sometimes shown is as the IQR figure but this is just part of the calculation mechanism).
The kPa figure tells you how dense the liver is and then depending on the underlying cause of the fibrosity it is then staged on the fibroscan score chart. Where NAFLD has been the issue then anything over 11.5 is cirrhosis. (providing there is no ongoing liver inflammation which may be falsly elevating kPa).
My hubbies consultants have said it's not worth him having a fibroscan 'cos we know he has cirrhosis and it will add nothing to the diagnostic picture i.e. cirrhosis is cirrhosis regardless of how high a kPa figure is now.
Katie
My hubby and I are off soon on a near month long caravan holiday with our e-mountain bikes. Life is for living even if it's with a health condition. 
good for you, enjoy your holiday x
Hi Sophia, Welcome to the forum !
So .. First off I was exactly like you, my head in a whirl , I was end stage liver disease ,stage 4 with a kpa of 28 ..
One thing I suggest is if you have access to Google then don't go looking for answers as they are mostly wrong.
No one on here is medically trained ,so all we can do is give advise and our own journeys.
I'm now coming up to 15 yrs in June since my diagnosis, I no doubt had cirrhosis for a good few years previously as I had ascites previous bad bruising of the skin and itching.. bleeding due to ulcer .
I did what my consultant told me from the get go .. as Katie mentioned, no one ,not even our liver consultants can say how long we have to live one things for sure it's never stopped me going on holiday, concerts, theatre ,meals out I do have mobility issues now but I live the best life I can , whatever is round the corner I don't worry about..
My kpa is 11.5 my bloods have been normal for a very long time .
Try not worry , and always ask any medical advice from your hepatologist or liver nurse ..
We are a good lot on this forum.. so your not ever on your own
Linda x
thank you Linda for your lovely post, and well done for doing so well on your journey, we’re you put at stage four because of your kpa score cos mine is very similar well 21.5 , so you are now 11.5 which would normally not be cirrohsis, but you still are is that right? This really confuses me, I don’t understand how the kpa score could go to normal 7 yet a person would still have cirrohisis , I know Katie tried to explain but It still don’t make sense to me 😢xx
Thank you for your kind words..I was told I had end stage liver disease from diagnosis , to be honest with you I don't take much notice of a fibroscan reading, it just tells you across the board how stiff the liver is due to scarring .
From what I gather ,the stages of F1-F4 cirrhosis is made up from a selection of blood test results.
to this day I still don't understand some of the readings so I don't worry ,if my hepatologist is happy then I'm happy .
Try not to be sad 😊.
Cirrhosis isn't an instant death sentence facts and figures I leave to my consultant .
Linda x
@
probably the best way, I wonder how you got your kpa from 28 to 11.5 though, that’s amazing , although learning on here I need to stop obsessing with the kpa score as it does not matter what the figure is , it all means cirrohisis, I believed bight was worse etc , thank you for your time xx
Hey Sophia, I suppose my immediate stop taking alcohol along with a high protein diet and good healthy foods that bought my kpa score down.
I'm due another one in September this year, my hepatologist Said so when I saw him this march .
Yes .. try not to worry so much with facts and figures..
Your more than welcome to private message me anytime if you need
Best wishes linda x
thank you Linda, I would love to pm you at some point, I really appreciate that, very kind of you xx
Your most welcome xx
Wow this is so inspiring. My kpa was 26 two months back but I still my consultant said cirrhosis is not yet established as there is nothing in my ultrasound. Even my dietician says I don't have cirhosis and after two months strict diet control it must have come down too.
I reduced my kpa from 26.2 to 14.9 in two months with good diet and everyday 30 minutes walking
Wow Meen that is excellent and very reassuring to hear, thank you so much, well done you xx
Where are you getting information about returning to 7 kPa? That could only really occur if the initial figure was falsly inflated by inflammation - the fibroscan machine cannot tell the difference between actual fibrous tissue and ongoing inflammation so in the presence of elevated inflammation markers the kPa figure can be a false high (there have been forum members return the full 75kPa but it's been hepatitis (liver inflammation) which when treated has reduced kPa figure to normal leaving no permanent fibrosis.
With cirrhosis it might be possible to reduce kPa a bit but not back to normal healthy liver range.
Katie
aww ok that makes sense , I had just seen the odd person who had high and then low kpa but I didn’t kvow the full story or why, I was just living in hope I guess, looking for some miracle to improve my kpa but you saying it can’t reduce makes more sense sadly , xx
It may improve but cirrhosis isn't fully reversible. Still can make efforts to live well and keep symptoms at bay.
thank you Katie x
I have kpa 75, controlled ascites due to diuretics, but my bloods are ALL within normal ranges. I feel better every day . Other than the stats I wouldn't say I feel anything wrong with me. I'm trying to see the positives, there must be thousands of ppl with cirrhosis and don't know it and die. Least we know and d can do our best. All of us could get hit by bus at any point, so enjoy what you can. 7weeks ago I was in resus and didn't think I'd see another day, 2 weeks later I didn't think I'd live another month. So roll forward 7 weeks and feel completely normal
thank you love, funny enough when I was upset the day i had my scan, my mum said (sounds harsh but it’s cos she was upset) she said you would have been better off not knowing, through tears I corrected her and said I’m glad I know at least now I will be screened for cancer ( my biggest fear) and if I need banding done it will hopefully stop me from suffering like many others have, Katie’s husband for one who had no idea until he had the massive scary bleed, I also said I could die from something else in between cos no one knows do they, and look at you my goodness you have been through it and yet here you are reassuring me bless your heart, thank you for grounding me and good luck yourself going forward xx
We just have to follow advice, hope for the best and try (easier said than done) not to.over worry.What will be, will be. We could get hit by a bus tomorrow.
Personally I find it better to know n face head on how ever bad the results. I'm in this position from burying my head n drinking to forget, so from now on I deal with it
I also have liver inflammation. May be that's why my kpa score was 26 and doctor said cirrhosis is not yet established.
my darling Freya , thank you so much, I feel so alone apart from this forum, …. Just like I felt alone with my WDEIA diagnosis last year and my cancer one three years before , infact the diebetes and poly cystic ovaries as well, no one else understood cos I was always the one who had everything and no one else had to worry , I must have been a really nasty person in my previous life lol xx
Hey Freya, that's so nice of you to say ,thank you 😊.Not an easy journey at times ,albeit I'm happy if my journey helps raise others spirits ✨️.
My vett best.. Linda xxx
thank you Freya, I can usually post long VC and nice replies, but I’m just blank as to what to say to any of you now, except thank you x
Hi there
I was diagnosed with cirrhosis 3 years ago following a fibroscan reading of 21.5. I had been diagnosed with Hep C which I got from infected blood (transfusion), in 1986. I am now clear of the virus and have 6 monthly scans for life. My last 2 scans have shown my liver to be working normally but with fatty infiltration. The radiologist last month said my liver didn’t look cirrhortic! Although I would love this to be the case my GP said it is almost unheard of for cirrhosis to reverse. His advice was to carry on with whatever I am doing and enjoy my life. I try to do that anyway but have asked for another fibroscan just to satisfy my curiosity.
Take care
aww bless you hun, what rotten luck to have caught hep c from a blood transfusion, i am glad you are clear of the virus and it’s great that you have good blood reads now, and wouldn’t it be a lovely miracle if your dr was right and your liver was no longer cirrohortic, Good luck with your fibroscan my lovely xx
thank you. And I know exactly how you feel. I was devastated 3 years ago when I was diagnosed. I always try to remember what my consultant said, “ you will die with cirrhosis but it doesn't mean you will die of it”.
All the best.
Hello sophia,
I have fibrosis due to hemochromatosis, my grandmother was diagnosed with cirrhosis at the age of 55, supposedly due to hepatitis C in a blood transfusion, although the real cause that we found out many years later was hemochromatosis.
The important thing is that she died at the age of 84, perhaps it is an exceptional case, but exist. From my personal experience, the first thing you have to get out of your head is fear and the recurring idea about the disease, start taking care of yourself and try to live. It's easy to say, but it's going to be one of the hardest things.
thank you isi wow your grandmother did really well bless her, thank you for your encouraging post and advice, it really means so much that so many of you are replying to me, you have no idea how much it helps a person like me with anxiety xx
My current score 8.8 kpa we all live in a kinda 'have I got it, have I not got it' I think of my liver as a sort of jelly with little pebbles in it. I have good flow the portal, saw it on the tele all dyed blue, better than any Netflix show. No syptoms, boundless energy, not even remotely diabetic or pre diabetic. Focus on not addding any more pebbles, the specialist nurse said if I got below 7.5 no longer NAFLD.
In my heart of hearts do I think I have some cirrhotic 'pebbles' in my liver, yes. (10.8 kpa 3.5 years ago)
Will these 'pebbles' ever go back to jelly, of course not.
It is like my scar from melanoma, no one is going to skin me at death for the beauty of my skin. They are just going to fire up the burners and incinerate the lot.
Dying with something rather because of something is a deal I have stoically accepted.
Enjoy life!
thank you , good attitude to have x
Stoicism the philosophy thereof, not the Parthenon, was the greatest gift of the Classical age to the modern age.
Hey SophiaI'm end stage with cirrhosis and on transplant list now. Ive never had a fibroscan!! Mainly because they couldn't do it due to fluid but just gives me less to worry about. I've been told I'm on an upward trajectory, despite being dreadfully ill a year ago. I try not to think too much about numbers, if I feel good then it helps my mental state. I go to the gym everyday and my ascites have come right down.
Try not to get too bogged down with it, as a few others have said, cirrhosis is what it is for many people but it doesn't mean you have X amount of years left.
Take care x
thank you Chris, I will try to remain positive, I probably will feel up in the air until I speak to the consultant , hopefully not too long to wait , I just need to understand x
Please keep in mind that Fibroscan does not measures fibrosis (liver damage) directly. It measures your liver stiffness which is correlated with fibrosis . It is always some estimation not 100% accurate (like any diagnostic test). It can be both false positive and false negative (sometimes not obvious reason). It should always be read by your hepatologist taking into consideration symptoms, blood test, reason of test, possible liver factor etc.
oh really? So when I see the hep doctor could it mean worse or less than I am thinking? All I know at this point is that my cap was 360 which I was expecting as ultra sound and ct scan both said severe diffuse fatty liver, I know I can improve that score…. My kpa was 21.5 which I know is cirrohisis over 14, the technician said it is cirrohisis score, my IQr was 28% but not sure really what that means apart from accuracy is usually below 30….. the shock of cirrohisis yesterday was because my dr was not expecting it, she said my liver would shown cirrohisis on ultra sound and ct scan xx
It is hard to say. Do not think about it too much. See your hepatologist. Your kpa score 21.5 is definitely something you should not ignore but there are a lot of other tests that your doctor can/might order to see more details. Good luck.
this is what worries me as well, I really do not want a biopsy and they can not get me in mri machine because I am far too claustrophobic, I’m a nightmare all round, I’m also my own worst enemy, I have been crying all night and today, my head is pounding, I’m usually up out of bed by 8am but I’m still in bed with no intention of getting up, I know that will make people cross because I’m not helping myself , but I just can’t cope or function, I’m sick to death of fighting every day with all these issues, I have no energy or fight left in me, I’m just being honest so please don’t get cross, I can’t bear to upset all you kind people on top of everything else xx
thank you tizz, that all makes perfect sense, and good for you to have this way of thinking, I really wish you all the luck going forward regarding the transplant xx
oh hun you are so lovely thank you , I do like to reply but thank you for reassuring me that I don’t always have to xx
I am a very technical person, so couldn’t resist researching fibroscan readings and results.
Yes it measures liver stiffness, but a number of factors can affect readings.
For instance if you have eaten a meal within 3 hours, kpa can increase by up to 30 %.
Being “fat” around your torso, which probably is most of us on this forum, can affect readings.
Some say over BMI of 30 readings can start to become inaccurate.
I’m 80 kgs ATM and 168 cms , my BMI is 28.6 for example.
Regards
D
aww thank you so much for this, it s very reassuring at a time when I need it most, I am struggling with all this today, any little hope at all helps, even if it just helps for the moment and results in the same outcome, so I truly appreciate you taking the time to help me, I had not eaten for about 6 hours before the scan, and that was only a banana, yes I do carry a lot of weight in the torso area, I’m top heavy really, hips bum and legs do not look like they belong to the top half lol, also my bmi is really high it’s nearer 40 than 30 , I have lost three stone in a year and am really knuckling down to lose another 4 stone , then I’ll be happy , I really appreciate your help, you have lifted my mood and given me a bit of hope thank you so much xx
I think you should make a BMI goal, not a fibroscan goal.
I’m sure most hepatologists would agree.
So say set BMI 35 as a goal, 1 kg/month weight loss and even if this takes a year it is good progress.
D
yes I am serious about losing more weight, my bmi is prob down a bit from losing three stone, I need to lose another four, that’s my goal…. I know I am obsessed with this fibroscan score 😢, I wish I had not had it done, I was losing weight and doing what I should anyway, the only difference was I was happy and positive doing it, now I just feel deflated, I will carry on but now it feels like a depressing task, I keep praying for a miracle that somehow it’s wrong, I just can’t seem to accept it, I have struggled badly today, I hope you are ok , good luck with your up coming scan or tests xx
yeah, I get it Sophia. I’ve felt the same.
Try and focus on positive things you can do in your life to improve the situation. Make small goals. That’s the route to large accomplishments.
You got this. 😊
Thank you my lovely, I keep telling myself that people every day get thrown rubbish cards, some really sad things happen in life, people go to work and never come home, then I think is my situation really so bad, then suddenly the fear comes again, I’m just not brave, when I had cancer I woke every morning thinking I have cancer , now I wake thinking the first thought , I have cirrohsis, at least with the cancer one day it was gone 😢 I can’t bear knowing this is forever, also mentally I was messed up for three years thinking my cancer would return, I was literally just getting better and now this , I’m scared as it also has a high chance of cancer and they will look for it every six months, I just feel like mentally I am back in that place where I’m constantly looking out for cancer, maybe I would have coped better if I had not been so mentally messed up before , thank you for taking time to reply hun, I’m sorry if I sound such a negative person, please don’t feel frustrated with me, as you say, I will get there , hope you are ok xx
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