Morning everyone, I just wondered what the next stage is, what to expect going forward, will I get a letter through the post saying I have cirrohsis ( if so I will not open it, I can’t bear to see it written in black and white) will I have to have a biopsy ( which I really don’t want) or will the high cap amount of fat be enough to tell them the cause? Will I need to have an mri ( I’m claustrophobic and the only time I had one I needed diazepam to get in it, can I take diazepam with cirrohsis? ) will I have blood tests and imaging every six months to look for cancer 😥 ….. will I have to go on any meds at all? Sorry for all the questions but because of my anxiety I just like to be prepared , I’m really not good when something is put on me that I’m not expecting , I just wondered if there is anything I need to know going forward, will I need blood tests to back up fibro scan or is my high score alone enough to diagnose me, my bloods were ok in October but I’m worried now that they may not be , I admire every single one of you on this site, you all seem so brave, I want to be like that but I’m just not that person, health anxiety takes away any positive feelings I could have , I struggled terribly yesterday but will really try today to cope better, I just don’t know how to enjoy life when I’m constantly under this cloud, I just pray I get a good hep doctor , I really don’t think I can handle a negative one mixed with my own negative attitude lol….. sorry for the long post, if I upset or frustrate you then please just don’t answer, I can’t bear to be told off or put in my place at the moment cos that will upset me as well, omg I really don’t mean to sound so desperate and weak , im usually a very strong person believe it or not….. on the plus side I’m eating more fruit, veg and salad, keeping away from extra sugar , salt and saturated fats, plus I have dug out my air walker and cross trainer from the garage and set them up in my conservatory , never thought I would have my own mini gym lol, now to actually use them 🙄 thank you all again for being there for me, I appreciate you all so much, please realise that , have a lovely day everyone and big hugs to all those that are also struggling one way or another xx
what happens next : Morning everyone, I... - British Liver Trust
what happens next
It's a struggle, I've been in similar places to how you're feeling, and still am. I share many questions you have. I can't answer them for lack of experience, I know others here will. I get the pain and relentless anguish, I've suffered with anxiety for a long time. Want you to know you aren't alone and hope your situation improves.
Randolph
aww thank you hun , it’s nice to know I’m not alone, I am sorry that you are also struggling, it’s awful isn’t it, part of me wishes I had not learnt so much cos it scares me , you can’t win with me lol. Xx
You are welcome Sophia! And thank you, it is difficult, every day is a battle as you know. I understand that feeling and it is scary. I can feel like that too, we just have to work with what we have learned. That's all we can do. In a perfect world all terrible ailments would be cured immediately. I hope to see that world one day.
Randolph
I know hun, it’s all very scary, not just our liver problems but loads of things out there, like you I would love to see that perfect world one day, big hugs xx
Who ordered your fibroscan? Are you under a hospital consultant - gastro or hepatologist?
I would hope that it would be a discussion with doctor as to whether all your tests confirm cirrhosis or not ..... hopefully not by letter. You may still need further tests yet.
You shouldn't need an MRI to determine cirrhosis or not and liver biopsy is usually avoided unless the cause of any damage is uncertain and they need to look on a cellular level at what's going on or to firm up diagnosis (common in auto immune cases).
Have your list of questions prepared for consultation to make the most of and take control of your condition.
You'll want diet info. Ask about point of contact between appointments. If it is cirrhosis then the usual routine care is 6 monthly ultrasound, 6 monthly bloods and at some point endoscopy to check for symptoms related to portal hypertension.
There are no meds for cirrhosis but should symptoms start to arise then there may be a need for some meds.
There are also specific guidelines in place for those with NAFLD nice.org.uk/guidance/ng49/c...
Try and concentrate on exercise and keeping both physically and mentally well then you can get to grips with this thing once you find out more.
Katie
thanks Katie, my doctor ordered the scan cos I was so worried that an ultra sound said severe fatty liver, I then had the scan, saw the figure 21.5 and cried, the tech man said it’s cirrotic and that he was sorry, he told me to speak to someone at follow up and was surprised nothing was set up , he said he would email the results to someone , I just sat there crying saying am I going to die am I going to die, poor man , he must hav3 thought I have a right one here bless him, I have just looked at those nice quidelines and I wonder if you know what this means, it said do not offer tests to diagnose for cirrohisis for people who are obese 30 bmi and over or diebetic, (I’m both) unless they have nafld and advanced fibrosis as diagnosed by elf test above 10.51 so does this mean I will need an elf test and will that be what clarity’s it, in which case what happens if elf test is lower than 10.51 but kpa is still 21.5 sorry to ask you, I just don’t get what it means, thank you for the link though, it’s very informative Katie xx
Hi. I know just how you are feeling. I posted a similar post to you yesterday. The hopelessness of it all is totally consuming. People on here have been very kind and helpful. Don’t google unless it’s the NHS or Liver Trust is one thing I’ve learned. I have NAFLD with cirrhosis and intend to find out as much as I can from my liver nurse about it when I go for my next six monthly ultrasound. From what I can gather you can reverse NAFLD if it hasn’t progressed and halt or slow down progress of the cirrhosis if it has. Good luck with your results 🤞🏻
I definitely agree with the don't google. It's all doom and gloom and I tied myself up in knots it was horrid.
bless you hun, it’s very hard to get our heads round, we are still early days and it will take a while won’t it, stay in touch with me on here, we can go through it together my lovely xx
thank you xx
thank you phoenix, I’m sorry you feel similar and I’m also sorry for your diagnosis, I have put off replying because I feel it is wrong of me to keep sounding so doom and gloom, but I really try hard to be positive especially as all these kind people on here have bent over backwards to help me, but I always end up scared and upset again, I saw my dr today and she has not even seen a kpa as high as mine, ( she has not requested many fibro scans so I do get that) but she made it sound like the higher the number the more damage to the liver, and when you think about it it must mean that otherwise why have numbers at all, it said on the letter that my liver is severely impaired and when I looked it up it sounds like a death sentence in itself, I know I shouldn’t google but by going to the right online sites you always get the doom bits pop up as well…..so sorry to go on, I know it’s wrong of me, I should really leave this site cos I’m not being fair to the rest of you 😢
My heart goes out to you. I have read on an NHS site that even though cirrhosis isn’t curable you can stop its progression which is what I’ll be doing my best to do. Since my post I’ve been in touch with my liver nurse and she’s arranged an appointment with a consultant in four weeks. I’m just going to write everything down for then and hopefully understand more. Some comments have said that a fibroscan can measure other things like fat and one young man had one where his bounced off ribs and gave the highest score possible (that’s on this site somewhere) and his later scan was fine. If you Google make sure it’s only NHS and Liver Trust site and don’t give up. I know it’s kind of the blind leading the blind but where there’s life there’s hope. Also you can ring or email the British Liver Trust nurses, talking to someone really does help and keep busy, don’t give yourself time to dwell on it. At least that’s what I’m trying to do until I’ve seen the consultant. Good luck with everything and keep in touch x❤️
Hi Sophia 1968My story is similar ,been told I have cirrhosis but tested for genetic disease causing it came back negative ,not to go back for 6 months ,I feel left in limbo .
I'm trying to be positive n like urself have changed diet etc ,it's not alcohol related but I feel left hanging till August .I was looking at Google but have stopped ,read posts on here from some very brave people and get inspiration from their positivity,I haven't had biopsy but will be checked for cancer like urself ,we are still here and we know what we're dealing with people are walking around d oblivious of this disease .
Take Gare and think I'm able to exercise and still have quality in life .x
I totally agree hun, shocking as it is to get that news, it’s defo best to know than not know, I agree there are many walking around not knowing and that is even more scary, ignorance is bliss in a way but not when you could have bleeds and no idea why, google is a nightmare and no positivity just doom or gloom, you look after yourself my lovely we will get through this xx
Hi Poppet, you are going through the mill aren't you. Here's how it happened for me. My stomach grew until I looked like I was having quads. The doctor sent me for an ultrasound and within two days I was having a drain. My specialist told me I have severe cirhosis and to expect drains frequently. I never received a letter, they just hold all the information on my records. That time I was in hospital for a week and was extremely scared. I was allowed to go home, told never to drink again and that was that. I take spironolactone, Thiamine and Carvedilol every day. He also referred me to a dietician who put me on fortisip drinks. I am relieved to say I have only had one drain since, for which I was an outpatient and I have an ultrasound every six months and blood tests a little more frequently but not much more. Initially I was told I had two years which terrified the life out of me. But since I have been told people with this condition can live quite a long time. I hope this helps your stress levels all I can do is say try to be calm, do what they tell you and believe it or not, you can learn to live with it. Look forward. I say 'hope is like the sun, it casts shadows over the burdens behind us' you know where I am keep talking, until I found this site I had no one who understood. Take care my lovely.
thank you so much for your lovely message hun, when I hear your story I think wow how brave are you, how positive and level headed, then there’s me, little miss stressy, I have a few symptoms but nothing too bad so I should be grateful for that, I need to going the good in this situation and not the bad, good that I know, and good that I feel ok, as for this site I honestly don’t know what I would have done without it , thank you love and good luck going forward xx
Hi Sophia that is a lot of questions which we all have asked at one time or another but I think you’re anxieties really need to talk it out. What I would say is ring Healthunlocked phone number and talk to the lovely people at the other end I’m sure they will put you at ease . Good luck on your journey 💕💕
Stay safe All
Dogbot 🐶🌈Dave
thank you Dave, I will call the liver nurses at some point, once I can hold a conversation with out crying, also I was already set up for councilling before I got my result, I’m due to start this Thursday for a 40 minute appointment, the poor woman will have her work cut out with me, I had health anxiety issues before the liver business, now I feel even worse, thank you for your good advice and for taking the time to bother with me, it’s much appreciated xx
Hi it’s absolutely no problem and you are doing the right steps, good luck from the wife and I 💕💕
Stay safe All
Dogbot 🐶🌈Dave
bless you both, thank you so much xx
Carefull with most fruit, it's packed with sugar!Welcome to the scarey months of first diagnosis.
Next should come a face to face or a telephone conversation with a liver consultant.
You will have 6 monthly scans and bloods, mostly because your cancer risk is slightly higher if your livers cirrhotic.
Possibly they might do a gastroscope to check for varices, ask for heavy sedation and you won't know anything about it!
My Dr also did a pipe up the other end at the same time, good job he did because he found and dealt with 3 pre cancerous lesions, that was 6 years ago.
Worst thing was drinking the prep and waking up to the sound of my own enormous farts😁.
Those checks are a good thing, if it's spotted early it can be dealt with.
I am fat (no PC in my world, I am fat not obese) and they have difficulty viewing my liver with ultrasound scan so now I have 6 monthly MRI and my consultant prescribes 2 diazepam to be taken an hour before going.
I am used to it now and can go in the "washing machine" without needing sedating.
Possibly you might be offered beta blockers to prevent portal vein problems and advised on supplements such as thiamin and calcium etc.
At some stage ask for an ELF blood test, preferably lose some weight first.
Getting the cirrhosis diagnosis is horrible but once you realise its not a death sentence you carry on and realise all the future tests are "just in case" and not a countdown to severe illness.
hi Roy, thanks for the sum at the end of your response. That is what everyone should know first, that the blood tests and ultrasounds are “just in case, not a count down.” I didn’t really understand nor believe that at first - until i got more information.
I asked my hepatologist if the probability of getting decompensated increases with time. She said no, so these are independent probabilities. It is equal every year. Read that over again….. So I figure that this is something I can handle.
Since then, I’ve gone on 2 vacations. I consider myself very lucky
Take care.
oh wow, your post makes me feel better, see I assumed it progresses as time goes on, but I guess you are saying it only progresses if you abuse it, so expecting different symptoms (I stupidly saw it online) every year is not the case? I really need to keep reading your post, I might take a screenshot, please convince me with more like that lol xx.
Hi Sophia, One would come to that conclusion. I asked her that direct question about increasing probability. That is the answer I got - I wrote it down and circled it
It appears that if you are able to stop the injury (which may not be as easy as we’d like to think), the probability doesn’t change significantly. This is for my case at least, so I was told . I don’t know if that is always the case. That is why getting information is important.
I guess that is another risk, that if things go along fine for awhile, one may become complacent and fall back into the same trap (if it is diet related).
So, I am cautiously optimistic. 🧐😃
thank you Roy for your detailed post, can I ask what your kpa was and did they confirm with other tests like the elf one you mention, I am losing weight but I’m curious to know why it makes a difference for the test? My dr told me today that my liver is severely impaired and being such a high number meant more damage , that knocked me for six, I don’t know why, maybe cos I’m thinking maybe it’s not stage 1 , I’ll be honest, I’m scared I will just go to sleep and not wake up, this happened to my friend two years ago, she went to bed saying she didn’t feel well, and never woke up, she was only 35 and it was liver failure, I’m scared it could just stop working like a heart, I’m so sorry, please don’t think you are wasting time trying to help me, you all really do help, I’m just having a moment hun, ignore me ?……..also your last line about just in case is the best thing I have ever read, thank you darling xx
I will tell you my KPA but don't get your hopes up that yours might be wrong
First one was at a private Harley st clinic it was over 24
Second was NHS and was 10 so I asked the nurse to repeat it straight away and that one was 16.
Now I was VERY confused so paid for a full liver work up at the Royal Free in London.
That one was 23.
Ignoring the 10 they indicate cirrhosis.
Then I requested ELF test and it was confirmed.
I came to the conclusion that the actual numbers don't mean a lot because cirrhosis is cirrhosis no matter the height of the numbers.
ONLY thing that matters is stopping it getting to the stage when serious symptoms appear.
Avoid those symptoms and you have normal life expectancy.
Loosing weight will help avoid it getting worse.
Very encouraging. What if you only found out that you had liver disease because you had the symptoms... ascites (over 43litres) fluid last on my lungs, jaundice, malnutrition. 7wks on, all symptoms gone or at least controlled. Can we expect them to return even doing everything right or do we expect that if we continue the symptoms won't return? I know we don't have a magic ball
thank you. You have made me feel much better about my own diagnosis after reading your reply to Sophia1968
Hi Sophia, lots of good advice already given. I’d echo Dave’s suggestion of calling the BLT helpline, I’m sure one of the BLT will respond and give their details.
Pure guesswork on my part: as your GP ordered the scans, I reckon you should call the GP and ask for an appointment to discuss the results. It may take a while for the report from the ultrasound to be sent to them, so ring and find out if the results are there but don’t let the receptionist tell you on the phone - get it from the GP face to face. I also reckon the GP will refer you to either a hepatologist or gastroenterologist. Then you’ll be looked after by them. You’ll also be introduced to the liver nurses at your hospital.
I doubt if you’ll get a diagnosis by letter. I also doubt if you’ll need an MRI or biopsy. I had a biopsy because they suspected an autoimmune disease (PBC) as I have a family history. But these were indicated by blood tests first. Nowadays they don’t even use biopsy to diagnose PBC.
Re health anxiety. Talk to your GP about this as you may get some counselling, my daughter did. I also found yoga and meditation help me get through the tests. Just closing my eyes focussing on my breath and visualising something nice. It takes practice so worth starting a class before you need it. My Mum’s consultant recommended it to her ! We went to the local Buddhist group who did a 6 week course for free but with donations. But find what works for you.
You’re in that horrible limbo stage but it won’t last. And remember, it’s not a death sentence, just a wake-up call. Keep up the good work
thank you so much sweetie, I did see my dr today, she made me feel worse, she has not ordered many fibro scans so not seen a kpa as high as mine, she made it sound like the higher the number the more damage and I can’t help but believe that, she said on my liver report it said severely impaired liver, I stupidly looked it up and it made it sound like I only have 6 months, thank you for explaining all of that, I really appreciate all your help, I agree with what you say about yoga etc, my friend often does reiki on me but I’m not sure it works so I may try your idea, thanks again xx
Reiki is very relaxing too - do it all! No, seriously, don’t spend too much on it, you can end up spending a fortune on alternative remedies that just don’t work. Find things that relax you and make you feel good. There are lots of free online courses. I love yoga with Adrienne (that’s a safe Google) You don’t even have to do the moves to feel relaxed!
You really need to see a liver specialist because your GP, by her own admission hasn’t seen many fibroscans and has scared you without having any answers. Has she referred you on to a consultant? If not, ask.
I can see the BLT nurses have posted so hopefully you’ve spoken to them and got some sound advice.
Hang in there
As others have mentioned, if you would find it useful to talk things over our nurse-led helpline is open Monday to Friday from 9am to 3pm (excluding bank holidays)
The number is 0800 652 7330
Best wishes
British Liver Trust
thank you I will call soon xx
Hi Sophia At first your whole world may seem to be falling apart and it doesn't help if you are on the negative side of thought processes before this happened but I can promise you and I do promise that you will feel better about your self. Once you understand what is happening to your body , why it has happened and how it can be treated you will feel a lot more relaxed.
I have simply accepted that I have liver cirrhosis , I cannot change what has happened and I know that there a lot more people out there worse than me , this forum has shown that to me , and these people who are worse than me are positive and determined. Therefore I choose to be one of them also
My fibroscan score is 35.7 kpa. A decently large number ! I no longer drink alcohol, I attempt to eat healthy and I exercise regular. I cannot do much more. All this has happened in 13 months.
It's a complete bone shaker at first but the thought process does get better. Hope that helps
Paul
bless you Paul, if yours was caused by drink you may have a good chance to lower your kpa I believe? I think cos mine is non alcohol they don’t really hold much hope of turning it around as such do they, I do hope I feel better in time as you say, I love your positive attitude, sometimes I feel ok, I only seem to be on here when I’m in panic mode, seeing my doc today set me off, I was quite happy this morning , thank you for your time and patience with me xx
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