Hi Everyone
Just got my husband results back from his recent fibroscan just wondering if anyone can give me some idea how bad or good they are please as I have no idea 🤷🏻♀️
The fibroscan showed a liver stiffness of 34.5kpa (The only thing I know about Kpa is the it goes up to 75) and an IQR/MED of 39% this shows Cirrhosis. It also says he was referred by Dr as he had portal hypertension on imaging. Any information would be grateful received Thanks sending much love Deb ❤️X
I think if cirrhosis was confirmed before, this result was expected. As I know result above 20 kpa can have some more probability of bleeding (varices).
Hi MINTVCX Thanks for your reply
We only found out cause he when to A&E with a hot rash on his shin and it all snowballed from there, they thought it was cancer as the A&E found a lump in his stomach so he was sent for CAT scans endoscopy and colonoscopy ultrasound Endoscopy where they took some more biopsy then he was rushed in to hospital with an infection in his gallbladder they think it was caused by the ultrasound Endoscopy they think that Doctor Nik and banged his gallbladder and caused an infection and then they found the liver cirrhosis by accident, then we didn’t hear anything for months so I chased it up and his Specialist hadn’t received the results 🤷🏻♀️ The cirrhosis was only confirmed after he had the fibroscan just before Christmas. He’s just had some blood done so just waiting for the results from them hopefully they shed some light on wants causing the liver damage, cause at the moment they don’t know, The Dr did say if the bloods didn’t identify what the cause is he’ll have to have a liver biopsy Thank you ❤️Deb.x
Hello dobie! That sounds like cirrhosis, I’m at 18.7kpa with it. I also have portal hypertension. Now he needs to find out if he is compensated or decompensated. See a dietician and eat very healthy. It varies depending on the cause. I wish you both the best. He should be able to manage the condition. 
Thanks for your kind words, His Dr ordered some bloods to be done yesterday when he was in hospital with acute Cellulitis Dr wanted him to have it check out because of history with clots and I think he wanted to rule cirrhosis Rash too. He’s referring him to the specialist so hopefully they can get to the bottom of what’s causing the liver damage as it not alcohol related and they can’t seem to find out cause and wouldn’t treat him until they do he as enlarged pancreas and gallbladder. But I will find out if it’s compensated or decompensated. He been on a low fat diet diet for about 6 months because of his gallbladder he was supposed to be having it removed but the Dr wouldn’t do it as he said it was to dangerous to do, but since we found out he as cirrhosis he also on a low sugar low salt and low carbs diet, the hardest thing with Andrew is sweets and chocolates I don’t buy them but he orders them from Amazon and I cancel them 😂🤣😂 it gives me some hope that you think he should be able to manage the condition it all been such a big shock. We wish you all the Best too with your condition and sending you much love Deb and Andrew.x
Thank you Deb, the sweets got me too but that’s after I quit drinking. I can’t help but laugh about him ordering chocolate off Amazon. 😂 If he’s anything like me he’s going through a lifestyle/diet shock. I was stubborn and said they got me on this strict diet, can’t have soda, SALT (I miss salt) im going to have some damn ice cream. So I did but it just increased the fat on my liver apparently because I ate it for a few months. Now im eating better but I do have a cheat day once in a while. (Never alcohol, sugar, or over 2mg of salt though). Zuko knows his stuff and he has been through the ringer. I think he’s trying to convert me into being British. 😂
Glad it made you smile 😊 He’s a little sod for sweets, I mentioned to my Mum that Dark chocolate with a high coco was good for the liver so she got some for him but he ate three bars within a couple days so he been ban from that now to. He’s as all the excuses the poor dog 🐾🐾 gets blamed for everything sweet related😂🤣😂 I miss ice cream to but I’m trying to support him in low salt, low fat, sugar and low calorie diet the Dr sum it up best just cut out all the good stuff 😂 You got laugh or you be crying all day.
Are you going better now with everything how your liver doing if you don’t mind me asking, I spoke to a lot of wonderful people and I’m so glad for the emotional and practical support it’s been invaluable. Specially from Danny and Dave they are both stars. Are you from the States?
Thanks for taking the time to reply been lovely speak to you Wish you all the Best with your Health ❤️Deb…x
Ps better go and check Amazon for more sweetie orders 😂🤣😂
Hello Deb, yes I'm from the states. Your doctor did sum it up quite nicely. They may as well say... do you remember all of the great tasting food you used to eat? Well you can't eat any of that anymore. 🤣 Since I've cleaned up my diet quite a bit I'm feeling much better. I still have a gut but that's from all the food and sweets I ate after quitting drinking.
My joints started really hurting after I quit alcohol so it has taken me a while to get in a routine of working out. I basically just had to push through the pain. Now that I'm walking and sprinting quite regularly the pain is not as bad as it once was. Other than that, I just have slight fatigue and battling my work to continue telecommuting.
The mental part of this disease is quite unique from any other trauma or experience I have had in the past. Usually I'm not very optimistic but I think I wore myself down 7 months prior convincing myself I would likely need a transplant and they are very hard to get just like in the UK. Now I'm so optimistic it probably annoys people. I almost should put a disclaimer at the bottom of all my posts. I believe I can reverse this disease with time which goes against most doctors and patients. It's happened for some people why not me right? 😂
Danny and Dave are awesome! So is Katie. I'm not sure if you have heard from her yet.
Hi pushthrough
It hard with this disease as the first indication that something wrong is when the disease is already well established they only found Andrew’s because he when to the A&E ( The ER) with his leg, they originally thought he had stomach Cancer as the Dr found a lump in his stomach but thankfully it wasn’t.
Trying to Get Andrew to excise bought him a treadmill but because of his Cellulitis he been told no running but once it clearer up he been using that.
Glad you are going A lot better I think being positive is half the battle sod people you keep been optimistic and you will beat it there is a lot the Dr don’t know about this very complex organ I’m great believer in positive thinking I was diagnosed with RA in my early twenties and needed two new knees and a new hip but I refused the replacements I am now 52 and still have both my original knees and hips saying I was going to wait for a cure still waiting on the cure 😂🤣😂. The Medication as killed my Kidneys they are currently only working at 30% but I staying positive.
Danny is amazing person always cracking jokes. Dave and Katie have both help with support and information, this forum is the best thing I done since finding out about Andrew’s condition. You are all a great bunch of people.
You keep think positive and if you never need a rant or just chat with someone who won’t be annoyed at your optimistic 😂 I’m here ❤️
Good Luck with everything sending you big hugs ❤️ Deb…x
Maybe the cirrhosis was already there from the drinking previously. Cirrhosis is scarring and you cannot repair a scar. I had fatty liver deposits and it was hiding the cirrhosis during scans. (Doesn't pick up on blood tests) Before I new it half my liver was scarred. You didn't have to drink at this point to damage the liver, a plate full of fish n chips covered with salt would continue to scar the liver. When I had liver failure with 90% scarring and the fibroscan KPa score was 70.4, this is what led up to liver cuput the only cure was a transplant.You need to find out whether he is compensated or decompensated, this can be worked upon.
Don't worry about things, just go and find out more. Keep pushing because you will hear "nothing we can do", "come back in 3 months for more tests" unfortunately it is a long winded process. I was in A&E every other week with pains and ascites fluid. I didn't get taken seriously or have a proper diagnosis for 4 months. I kept pushing the liver nurses who gave me the answer. They arranged an appointment with a specialist consultant from a different hospital who took all my results into consideration and referred me to a specialist hospital where things got done.
It's not all doom and gloom , there are amazing things that the specialist's can do. Just need to be a little more firm for answers. Try to get promise's (it works).
Good luck with everything 🙂
Danny x
I find it interesting that half your liver was scarred and needed a transplant. My specialist said my entire liver is scarred and I’m not even on meds. How is that even possible?
When I found out that I had cirrhosis it was 60% the rest was put together from previous analysis. I stopped drinking and started again. This time was something I couldn't deal with then continued while working away. Then I was that depressed I started not to care about myself. When I had liver failure there was over 90% cirrhosis and KPa of 70.4 stiffness I've only been on the forum 4 months. I've been suffering for years. Still smiling 😊 x
Alright pushy (Mr G, teehee) I always miss things out. I have had so much done over the last year. Different diagnosis from different doctors. I got told once or maybe twice... That I may just have to live with it... Going to the hospital every 3 weeks for a drain and managing on a diet of carrots and coblars and hope for the best. I think you know enough about me 😜 for me to say "you bloody what? are you having a J RAF" (laugh) "I'm fighting this, there has to be something else" That is when my liver nurse told me about the specialist that comes to the hospital once a week, I said "can you please get me an appointment". The best move I ever made 🙂. Anyway I'm going to stop crashing Deb's post with my past... sorry Deb.
I'm off to try and scare someone into stopping drinking.
PS pushthrough I've edited my post it should make sense now.
No worries. Danny you do make me Laugh Your have a J RAF 😂🤣😂❤️X
LOL, you are hilarious. That does clear things up. I'm glad you kept pushing and pushing. It's so messed up that you had clear signs of liver damage and they just brushed it off.
I was treated like I was dying by the gastro until I got to Mayo and the Dr. is like what are you doing here. Pretty nuts I had to explain my gastro referred me when she had my info in her hand. She's like, oh the two small grade varices are really why your gastro sent you here. Then 7-8 months later I found out I have cirrhosis. No mention of a transplant despite her saying my liver is completely scarred. I guess because my Meld is 8 which is a great thing. Sorry Deb and will someone message me what J RAF means? LOL
Alright G..... It's mad how much Cirrhosis is dismissed and know it can be hard to pick up on. You would think as soon as you tell them about the drinking and the symptoms that cirrhosis would come into play. I mean you only really get bad symptoms with cirrhosis or fibrosis. (Nuts)I once kept complaining about my stomach pains and was full of ascites fluid, the consultant pushed down in my tummy (I yelped) he said "you are not ready for a drain yet". I said "I want a CT scan because this feels different" he said "you cannot be exposed to too much radiation" and sent me home with painkillers. 4 days later I had a drain went home but I kept getting pains in the abdomen. A few days later I suffered with chronic abdominal pain (at the cinema with my niece and nephew, I'd just eaten a burger 🤯😖) I went to hospital they gave me morphine through a canular. I had a CT scan and had a gall stone stuck in my bile duct. I went to the specialist hospital and had another CT scan (no bloody mention of too much radiation) anywho I had the gall stone removed and got an infection in my fluid which led to kidney failure. (Now do you understand why I got a transplant buddy). Owe the trials and tribulations of liver disease how we laughed 😂.
Totally off subject, I had a friend at school who was a happy go lucky character (like me) who's name was James Raffo which led to James are you having a RAF.......J RAF.....a laugh. Hahahaha 🤣🤣🤣🤣🤣🤣 completed terminology 😘.
Did fatty liver cover up cirrhosis on a fibroscan for you?
Hi DannyHe’s never drunk alcohol having a alcoholic Father put him off drink for life, At the end his Dad was drinking a bottle of whiskey a day that we knew of probably more he passed 2017 while Andrew was in the hospital ICU battling pneumonia and blood clots on both Lungs after being missed diagnosed by our GP I nearly lost him then the Dr said if I had not rung 999 that night I would of woke up next to a corpse he was that poorly, so don’t worry I will keep pushing until we find out wants causing all these problems I’m not going to sit back and watch him get worst if we need to go private to get answers, we will moneys no good to you if your not there to enjoy.
I think the blood test are to try and see if they can find out want is causing the liver damage. Yeah pushthrough said the same about finding out if the liver is compensated or decompensated what exactly does that mean? I sorry if it a stupid question but I honestly I’m so in the dark with everything and I don’t want goggle things as I just get upset and depressed.
I just feel like I’m banging your head against a brick wall I can’t understand while it taking them so long to find out what’s going on, I’m just worried that all this time ticking by with him not getting any treatment you know
I am so sorry you had such a bad experience Danny and had to wait so long before you got the right diagnosis if they had found earlier could they have saved your liver? I hope you have loads of support around you from family and friends❤️
Good luck to you too Danny ❤️Deb..x
Hi Deb..... The fibroscan score highlights the stiffness of the liver. It's hard to tell if you have compensated cirrhosis (usually no signs) but it means that your liver is unhealthy and requires a healthier diet (everyone is different) some people it's the salt that needs removing, others it's sugars (definitely alcohol) most it's both. Will have a small amount of scarring but the liver can still operate. Decompensated is where you start to feel the nasty effects... Weight gain, (usually fat reserves or ascites fluid) sluggish,foggy, forgetful, jaundice, aches and pains, breathlessness, etc. F2, F3 decompensated can be caught in time and by just changing your lifestyle can reverse the effects back to compensated, where you can live a relatively normal life (stick to the healthy diet) with hardly any symptoms. F4 decompensated is the point of no return (yeah me) where the liver struggles to function and it needs fuel to burn to work to keep you alive. (Your husband would hate the disease but love the diet) (that was an English joke pushthrough) The liver starts to steal your own muscle mass so to prevent this you have to feed it constantly (usually 5 times a day with protein and sugars) the snacks are ice-cream, milkshakes with full fat cream, chocolate, biscuits, yoghurts, scones with clotted cream, sugar on cereal, sweats, custard. You also have to eat healthy. I don't want to make the disease sound good (far from it) Those snacks just helped me because I was really poorly and they helped brighten my day and I needed them because my liver would need refueling every 2 hours. The way I would describe it is..... Like throwing coal into a steam engine and if you run out of steam/coal the engine will stop. (I've used that terminology before)
There is more to it than that, but you need to find out Andrews full condition so that you can deal with it appropriately.
I met so many people with different reasons for liver disease but I can only describe my own.
I've not met one yet without a sense of humour.....🤣🃏👍
All the best
Danny x 😋
Good Morning DannyThank you so much for the explanation on compensation and Decompensation that’s a great help, he as a few symptoms lost of appetite, lost body hair, lost muscle from his arms, tired, he is a bit more forgetful but not excessively and of course moody. He was told by surgeon that he had fluid in his tummy that was one of the reasons why he said it was to dangerous to operate
Oh yeah he would love that diet that’s what he’s missing the most biscuit and chocolate. Hopefully these blood test will throw some light on what going on and hopefully get to see the specialist soon. All I can do is keep him on a health diet and hopefully stop the liver from getting any worst
By the way brilliant news on blood results 👍🏻 don’t mind being woken up at 6.30 am with that sort of news bet you are walking on air! so very happy for you ❤️ Deb.x
Thanks Deb.....it's another day in a life of liver disease.....to be honest I'm getting quite sick of it.. haha 😂 good and bad news up and down like a...........yo-yo! Hahahaha!Please for your sanity when you get your results ask questions about the stage of his liver. Tell them you are a member of the British liver trust and you 'know' that the diet is so important to what stage of Cirrhosis he has. I don't know Deb but he sounds decompensated, you get fluid on the tummy from this stage also hair loss and muscle loss. Don't worry there are thousands of us like this it just needs addressing.
Tell the consultant everything from secret eating to how many pain killers you used to take or any drugs if any.
They need to know and will not judge...
Honesty is the best policy.... always all the best and we are here for support, just ask.......... Dave... hahahaha 🤣 x
Joking Danny x
Inquire about the IQR med. On the Echoshens web site, the company that makes fibroscan, it says the iqr. med. should be under 30% for a valid test. The facility where I get my fibroscan done is even stricter and wants it under 15%. Here is a picture of the reportung guidlines from the Echoshens web site.
Hi KC108
The Nurse who did the Fibroscan never mentioned the IQR Med when she did the scan I had to push to get her to tell the kpa score. It was only when we got the report back yesterday through the post that was was the first time we saw the IQR med %. I am new to all these scores and % it’s all a mine field still but the info and support I have from the lovely people on this fantastic site feel so blessed to have found it, it’s been such a help specially mentally.
But I will defo look into that and ask the Dr at his next appointment when ever that maybe hopefully soon ❤️X Deb
You must must MUST be your own healthcare advocate!! Track and trace everything!! Get all your scans/blood results etc. Ask questions. Good luck!!
Hi Deanw41I will do thanks for the advice and Good Luck to you too ❤️ Deb..x
Hi Deb,
My husband is the cirrhosis patient - though now going through other stuff.
Anyway, my best advice is to take a small notebook with you to all visits to take notes.
This helps to keep track of what is going on and also reminds of things you may not have understood during the visits.
This assumes you can go to his appointments with him - if you can't be with him, will they allow for you to be in on the visits by phone - this is what we are doing with my husband, we are in the U.S.
Wishing you both all the best.
Mary
Hi Mary
Thanks for the advise it’s a nightmare in the world at the moment with covid, appointments are taking forever and when you do get an appointment it’s a phone appointment I have been lucky they let me in when he had his Fibroscan and his lastest phone appointment just waiting now for his blood test to come back hopefully with some answers as to want is causing the Damage and if they don’t shed some light on the cause they going to do a liver biopsy.
Wishing you and your Husband the very best and hope you get some good news ❤️Deb
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