Can anyone tell me the difference please. Also people keep talking about a Child Pugh score. I've only been diagnosed with cihrossis by ultrasound. Can i get a fibroscan and I have never been given a child pugh score either. I'm under a consultant hepatologist. Shouldn't I have been given a child pugh score.
Thanks
An ultrasound produces an 'image' of the liver whereas fibroscan takes (usually) 10 readings across the liver with a median / midpoint score providing a kPa (liver density) score and sometimes a CAP (fat content) score.
If your cirrhosis is obvious on ultrasound or through symptoms present then a fibroscan adds nothing to your diagnosis. My hubby has cirrhosis and has never had a fibroscan.
As for Child Pugh Score then not everyone gets given the result of this - in the 11 years since my hubby was diagnosed we've never been told his - it's a clinical tool to alert medics as to life expectancy/potential transplant need and some patients get too hung up on these scores rather than getting on living their best life.
My hubby nearly died from decompensated cirrhosis back in 2012 and we are currently on a month long holiday in the Cairngorms cycling nearly everyday. 36 miler done today on our e-mountain bikes. Living life to the max rather than running scared of what latest bloods revealed etc.
Katie
hi Katie, sorry to jump in, but could I just ask about the median score, mine was 28 which I thought shows accuracy as in anything under 30 is reliable, is that right or does it mean that my average read was 21.5 but some reads were 28…. I’m really sorry to ask but it has been bothering me for a while, enjoy your holiday both of you, you have such a good outlook and attitude to life, (you and your husband,) I often think of you when I get a wobble, it brings me back to reality (thank you) xx
Thanks Katie. I nearly died from decompensated cihrossis two years ago too. Enjoy your holiday. 36 miles today - wow. Wish I could do that. I guess that the ultrasound was enough then. Thanks again.
Hi Katie - hope you're having a great holiday. I have seen you write a few times that Fibroscan adds nothing to cirrhosis diagnosis and I'm aware of scarring being permanent but surely the scores from subsequent fibroscan can indicate trend in your condition and prognosis ? If one undetakes recommended (and sometimes challenging) lifestyle changes any tesulting improvements in kpa and CAP could reinforce ones motivation to keep it going? I thought that although the Fibroscan cannot differentiate between cirrhotic and fibrotic areas of the liver and therefore the lifestyle changes could reverse some of the fibrosis that contributes to the kpa and CAP readings or have I misinderstood?
It's what hubbies liver consultant told us when I mentioned fibroscan - cirrhosis isn't going anywhere so once you have a confirmed diagnosis it isn't that valuable a tool.
Thanks Katie and I understand that from the consultants' detached and objective perspective but many of us with the disease and health anxiety don't find it easy to be so 'black and white' about test results. I will ask my consultant next week about the points i raised on the pyschological impact of knowing the trend in your blood scores and other test metrics as I would certainly like to know if my cirrhosis is stable or getting worse and if the fat content of my liver is reducing as a consequence of my lifestyle changes.
kind regards Pete
What a lovely reply, Katie, optimistic, uplifting and very informative.
Enjoy your holiday in the breathtaking beauty of the Cairngorms.
It was in my hubbies case and the twice yearly ones he's had since all comment on the coarse, dense echotexture and shape change of liver.
the other thing to remember is things like child Pugh and your status as decompensated or compensated can change (improve) over time which was something we were not told at the start. My partner is now considered compensated, when I was first told he had cirrhosis they only told me it was ‘end stage decompensated’ and his child p was 3 - the worst.
My ultrasound said fatty enlarged liver, enlarged spleen and gallstones back in October. I have a fibroscan this coming Friday as my latest bloods point to either very high level of fibrosis or cirrhosis.
I wonder if 6 months is enough for a fatty liver to become cirrhotic?
Anyhow, I hope to have some sort of result after.
@LilacPoppy how did you fair out with your Fibroscan?
What bloods were abnormal as a matter of interest as they may well indicate your issues with gallbladder etc as well, some bloods are more specific to the liver ie ALT, GGT etc, others not so. A fatty liver can go through the gears depending on many things, especially if its NAFLD and due to autoimmune, Hepatitis etc. Do you have symptoms at all, yellowing etc that might occur given the time period. Like most here I am no a Dr but 6 months would seem quick from simple fatty liver to extensive damage.
For the active transplant list they monitor your Pugh and Meld scores, the higher the score the greater the chance that you need a liver transplant and you get bumped up the list.
For me a routine blood test at my GP identified something wrong with my liver, they did more tests, specialist, consultant and diagnosed possibility of cirrhosis before then doing a liver biopsy which confirmed my cirrhosis.
I used to go for regular ultrasounds, but don't recall having or needing fibroscans. Never heard of it until I have read it in the forums here, maybe I had them and did not know about it, who knows 
When I first got diagnosed, I got really worried, having read all the negatives on the internet, to the extent I accepted I was going to die, nothing could be further from the truth back then.
It took 12 years before my liver cirrhosis went into liver failure, admittedly the last year showed massive deterioration as I developed ascites and it became decompensated with yellowing of the skin, yellow eyes etc. The last year I had to have regular drains for fluid build up which got worse and worse, it was quite amusing being a guy I would get strange looks, I was so bloated from all the fluid, I looked pregnant, I ofc took the opportunity to make jokes about this and even sidled up to some women who were obviously pregnant.
Throughout this period they monitored my pugh and meld scores to determine where I was on the list for liver transplant, the more complications, problems that you develop the higher your score.
We are all different, it depends at what stage you get diagnosed and what treatments are being performed, so you will see a lot of negatives on the internet and you may think you are at an advanced stage of liver disease, and you might not be.
Obviously if you are drinking alcohol you need to stop immediately, alcohol damages the liver, and the liver performs so many vital functions that as it gets worse and worse you feel more and more ill. (just a note I keep reading in other posts, it is not decompromised liver disease it is decompensated liver disease, decompromised is actually a double negative which is then a positive 😀, and there is no such condition as decompromised liver disease)
If only I could have gotten all those years back, that I worried about liver disease, when it was in its early stages still. Not to say, eating right, not drinking, regular exercise are a waste, but for me, withdrawing from the world was a bit of a waste and getting older, I made the possible mistake of not wanting to be a burden on anyone so I cut myself off from others, it's important to live your life, which is why I am so envious of Katie's holiday, the idea of cycling and not being cooped up in bed, is really appealing (hope you both have a wonderful time).
As most of you know I have had my transplant 5 months ago and the liver scores have been wonderful, unfortunately it looks like I have blockage somewhere that is causing my fluid to build up and I am presenting with a lot of edema all over my body, which is a pity because just a month ago I was increasingly going for walks etc. outside, love animals, love greeting dogs and cats.
Remember to stay Happy 😀
Thank you. Really appreciate you taking the time to reply. Totally agree on the stay happy too. Thanks x
E-bikes are pedal assisted so you only get the motor help if you are pedalling. No throttle, no easy ride, just takes the sting out of it and allows you to go further and up steeper climbs that those of us lacking in full fitness would otherwise achieve. This hols we've done a total of 335 miles (so far) and climbed 27,246 ft - getting on for nearing the height of Mount Everest.
Not bad for a 62 year old with cirrhosis, a 49 year old wee woman with arthritic knees.
The e-bikes and the increased access to wild places have definitely been a reviver.
Katie
Can you send me the specs and where you bought them, they sound like something I could try, though these days I find bikes hellishly uncomfortable
What a great idea! Those bikes are a clever invention, but I never considered it as a means to plans trips as such. I thought they were typically used as a transportation device for day to day use.
I’ve got arthritic knees too. From all of my sports.
We're in our caravan which we move around - maybe 3-4 sites per hols then do day rides out. Brilliant machines which have certainly boosted our holiday enjoyment. Hubby used to be a long distance walker and cirrhosis knocked that on the head but the e-mountain bikes have been great. Getting us back out into the mountains and glens. Much less work than a manual bike and increasingly much more evident out on the hills.
Katie
That sounds good. The walking takes the energy very quickly. I used to walk miles and miles. An E Bike wouldn't survive the potholes where I live. The idea of moving around in a caravan is very appealing.
We upgraded to our current caravan when hubby was taken off the transplant list. Having spent 10 months unable to travel (other than to East Lothian for hospital appointments) we are making the most of life and have travelled all over northern England annd lots of Scotland. Our local roads are mtb needy too, these machines go anywhere you are brave enough to take them.
The roads are a nightmare because most of the road is missing. This time of year hopefully it will get warmer. Past week up here far north, 5 degrees C after midnight, Barely 12 c now, The good thing about being outside it clears the mind and gets you out in the fresh air and sunshine. Enjoy your adventure.
My thoughts and prayers are with you MrHappy1024. I have a touch of stable cirrhosis and Parkinson’s disease. I’m don’t let my age (65), and afflictions stop me. I appreciate the input you, Katie and others on this site share. I also think laughter can be the best medicine sometimes When I laugh at myself, nothing else matters. Godspeed to you and all afflicted.
Tyvm for your kind thoughts, there are many people with greater contributions than me and I am nowhere near on par with Katie, but I appreciate your kind thoughts.
I wish you all the best too, we have to endure and try and stay positive, however challenging it is and being humble, keeping a positive and happy attitude and being able to laugh it off, really helps when times are grim.
It's so nice to have a community on this forum supporting each other. I am equally grateful for the support of so many people on this forum.
I completely agree with you. Thanks again. Have a lovely day x
Two different technologies to check liver. Fibroscan appears to be used first when there are no full blow symptoms of liver failure.
Fibroscan utilizes soundwaves that measure the velocity that is reflected back to determine the presence of severity of liver fibrosis. The principle states that the faster the sound travels back (measured in kPa) the more likely that the liver has hardened.
Ultrasound machines employ high-frequency soundwaves, which are above the range of human hearing (frequencies of over 20,000 Hz). Sound waves are generated and aimed at the liver. The image is then created based on how long it took for the signal to be reflected back.
FibroScan is said to be superior to ultrasound for the detection of liver scarring and therefore may be used to determine if cirrhosis or advanced fibrosis is present at the initial assessment and whether it has developed during follow up because of disease progression.
I had my Fibro scan last, after several six monthly Ultra scans. All this was done by 2021 early 2022. I'm in Highlands, all happened quickly.
Very interesting. Thank you.
Hi, I’m 10 months on after nearly dying & my diagnosis of decompensated cirrhosis. Just had 2 ultrasounds and no others were needed. I was just told Meld and Child Pugh are calculations they can make to see how sick you are regarding transplant etc…so I’m not concerning myself with those until my assessment for transplant which happens end of July.
This is all super worrying at the beginning. Try not to get too bogged down with numbers. It won’t do your mind and cortisol level any good.
I feel for you and there is great support here.
Take good care.
Thanks. It is all very worrying. Hope you are OK. Thanks for replying. Best wishes Golly
Not everyone is given MELD UKELD or Child-Pugh as they're considered of limited value but there are calculators to do it yourself. We're not permitted to share the links on here.
OK. Thanks. I will have a look. Really lovely of you to reply. Thank you x
I wouldn't get too deep into all that, it will scare people. At 53 stage 1 Cirrhosis without complications 12 - 15 years that means 12 years remain at age 56, now. But I never worry about it. I think that system is based on procedures etc that cause issues. I'm not medically trained. Talk to your specialist team.
Ultra scan shows blood flow and direction of flow. It shows size and shape of internal organs. Fibro scans only shows density, mine was 39.2 . How stiff or hard the liver is will be reflected in the score. Liver nurse and or consultant will write and advise you. That's it! The probe is placed on to your rib cage at the side, all very quick. I just follow whatever they say, never worry, totally pointless.
vinylcollector did you ever have the ultrasound elastology as well or only the fibroscan? At 39.2 what stage of cirrhosis did they say you had...did you have symptoms or complications?
Diag with NAFLD Cirrhosis from biopsy, doctor said theres no difference between a 15kpa and 30kpa fibroscan score, confused?
Update
Cirrhosis,child Pugh score A
Understanding doctors letter
