Hello. This is my first post. Although I've been lurking since early October.
After being unwell since march this year I have been told I have Nafld. Cirrhosis with some fibrous. My hep nurse did a scan. Said I would have to have tests every six months for the rest of my life. And a gastroscopy every three years. I go for my first gastroscopy tomorrow and am feeling pretty nervous.
She sent me on my way saying I needed to up my calories to more of a normal person and lose weight through exercise. To download two information sheets from the liver trust and she'd see me in six weeks. But if I has any questions to email her.
I've since sent two emails that make me feel, firstly that I'm over thinking things and secondly saying I don't need to do anything special.
She did say my liver was working and doing its job.
My consultant wrote to my GP saying I have cirrhosis with fibrous and that it was caused by antibiotics. Although I don't recall any conversation with him about medication.
I'm feeling pretty confused if this Diagnosis is as serious as I first thought. Am I right to be concerned?
Sorry for the long post I just feel like I'm trying to get my head around a lot.
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tinkabell3
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Hi there. Welcome to the group! I also have cirrhosis - but everybody has a different story to tell. Good luck with the gastroscopy. I always tell them up front that I am nervous about the procedure - I think I am a bit of a wimp as I also tell them that I want sedation (You need a responsible adult to look after you for 24 hours afterwards. ) However the end result is good and I no longer feel anxious at all about the procedure. I am seen every 6 months by the hepatology team, and my GP does blood tests in between times. I have ultrasounds when I see the consultant so I get the result from that straight away. Let us know how you get on tomorrow (I always get a result straight away for that as well. )
Thank you so much for your reply. I will update tomorrow on how it all goes. I just don't know what questions to ask, or where to start. Any advice would be very gratefully received.
Good luck with the gastroscopy. I have nafld and had a fibroscan result indicating cirrhosis. But a still functioning liver. I think medication and an injury I had contributed to my liver problems along with needing to consider my diet and exercise. The exercise is hard for me due to my injury.
Try not to worry too much. Try and get as much information as you can. If possible can you ask for blood test results on the printouts? The hardest part is having to await results and then thinking about the information you get given. It may take a while for the specialist to get the information they need.
All I can really suggest at this stage is write any issues you have down so you remember to ask them. Another is look after yourself and try not to worry too much, far easier said than done I know. The last is deal with whatever it is you have to deal with but remember to try to have a life as well. Not always easy.
It I'd serious but try not to worry. I have started the life long ultrasound checks and endoscopic checks. They are making sure you don't have tumours in the liver. Catching them early makes it easier to treat and the endo check is looking for verocies or varicose veins in the region of the stomach. These are caused by pressure in you blood because of the blocked up filter (your liver) you should have this explained to you. They are all precautions to catch things early IF they happen. We are all with you
Hello and thank you for your replies. The gastroscopy was not as bad as I thought it was going to be and I don't have to have another for three years. Tests showed mild erythematosus gastritis. No varices. no features of portal hypertension.
I am back to see the liver nurse on Wednesday when I will ask for a copy of how my fibroscan scored?
I would ask what your definite diagnosis is - this is important.
Do you have non-alcohol related fatty liver disease (NAFLD) or has it progressed on to become cirrhosis? The reason I say this is your diagnosis in your first thread seems very back to front. NAFLD can lead to your liver becoming fibrous and eventually cirrhotic - cirrhosis is considered stage 4 liver disease and this would lead to the need for the 6 monthly ultrasound scans and monitoring for the side effects of cirrhosis.
Also, has your cirrhosis come about due to NAFLD or do they thing something else triggered it i.e. the mention of antibiotics (this would lead to a possible diagnosis along the lines of chronic active hepatitis or auto-immune hepatitis). Do you still have ongoing inflammation which needs brought under control? Have they tested immune antibodies? Have you had a liver biopsy or is one planned?
Controlling what has caused your cirrhosis (if indeed your damage is that severe) is important going forward so you can reduce any further damage. So they should be trying to establish why you have liver damage. If it is NAFLD then there are steps you can take. If it is due to previous medication then they need to establish what so it isn't repeated etc.
In my hubbies case he presented with advanced stage cirrhosis symptoms (burst varices, jaundice & more) back in 2012 and his diagnosis ended up being cirrhosis due to Auto-Immune Hepatitis (with his AIH being burned out and not active).
Write down all your questions, you are just starting out on your liver journey so you need to take control of it at the outset be an active patient, ask, challenge and make sure you get your answers. If possible take a loved one with you, two pairs of ears are better than one as you can easily become bamboozled by all the med speak from doctors.
Keep on board the forum and we'll all make sure and support you on your journey.
Ok, looks like a definite diagnosis of cirrhosis due to NAFLD - auto-immune antibodies negative.
Ultrasound with the coarse echo texture and fibroscan confirm it really.
Have a read at the British Liver Trust page on Non-Alcohol Related Fatty Liver Disease at:- britishlivertrust.org.uk/li... to see if there is anything there you can change to help your liver. Also check out the cirrhosis page (I found it a source of loads of knowledge when hubby was first diagnosed) britishlivertrust.org.uk/li... It really helps to know your way round the illness and know what symptoms might crop up that would alert you to things perhaps deteriorating and that way you can chase up quicker appointments etc.
Your liver can go on for years in what is known as a compensated state - hubbies consultant has patients on his books who've had a cirrhosis diagnosis for 20+ years. (It's good news that you currently arn't displaying any major symptoms of portal hypertension as that's the biggy that causes most issues). Your liver is coping at present and able to carry out most of it's major jobs though you might find odd things that arn't quite as before and that's because your liver isn't working at 100%. If it starts to get more damaged it can slip into a decompensated state and that would be where it is struggling more and more symptoms occur.
My hubby has been diagnosed since April 2012 when he presented with advanced and life threatening symptoms though his liver quickly became compensated again. He spent time on the liver transplant list (July 2014-May 2015) but his liver 'stabilised' and it took him out of the criteria for transplant and back into the monitoring stage. Fatigue and symptoms of mild Hepatic Encephalopathy are his major symptoms now after all his varices were eradicated and his portal hypertension reduced.
Sounds like you are in good hands with the monitoring that's going on. Have a see what you can do to tackle the NAFLD to prevent it's continuation although you'll also need to keep your body fuelled as you need to snack and take plenty protein to maintain your muscles. A dietician referral might be appropriate for you to ask for.
Katie once again thank you so much for taking the time to reply with such detail. My partner is currently "in charge" of my diet. I feel it includes him in my illness and gives him a job to do.
I have the downloads and we have studied them. X
I'm eating every two hours to keep from fatigue. a high protein low salt/ fat/ sugar diet and losing weight at no more than 2lbs a week. I have asked my nurse to refer me to a dietitian but she tells me I didn't need anything special, which I find frustrating as i want to do as much as possible to stay as healthy as possible. I'm walking approx 20,000 steps daily and taken up aqua fit and dance exercise. I feel so much better for it and want to continue to feel well.
I've had so many tests including, leukemia, deep vain thrombosis. Blood cancer and loads more I can't even remember and my GP saying it can't be serious we've ruled all the bad ones out. before getting to the bottom of all my symptoms.
I'm so glad your husband is feeling better than before, thank you once again for your replies and to the others here who have taken time to reply x
I'm back at hospital today to speak with the liver nurse, so I'm hoping to find out a bit more detail about where my liver is at and what else I can do to keep it well. As well as all the exercise and healthy eating I've also stopped smoking. So have made some big lifestyle changes in the last six weeks. I hope long term this will show some improvements. X
My appointment went well and I've been given some numbers. Firstly all my bloods are normal.
Compensated cirrhosis f4
Vitamin D is low I'm on supplement.
Stiffness of my liver is 18.5
Can anyone shed any light on what these figures mean please. What is the highest/ lowest stiffness figures. What happens if I go above? Does that then turn to decompensated?
Liver stiffness reading of 18.5 just confirms your cirrhosis diagnosis (as does the F4 - cirrhosis is considered stage 4 liver disease). The fibroscan numbers read up to 75 at the top end. I wouldn't worry about it at all, many folks never have a fibroscan - my hubby has never had one, his consultant based at the liver transplant unit said "no point as we already know you have cirrhosis".
Good news it the compensated cirrhosis and normal blood results, it's when bloods start to go 'off' particularly albumin, bilirubin, creatine, rises in INR blood clotting time that they would start to think the liver was getting more poorly.
Look after your liver going forward, aquaint yourself with the signs and symptoms that might indicate any worsening of your condition and make sure if you do spot anything going untoward you get it followed up and checked out.
Keep looking after yourself and hopefully you can reverse some of the damage and keep your liver ticking along for a good while.
Katie thank you once again for your response and the time you have taken to help answer my questions.
Myself and partner are trying to study and gain as much understanding of this condition as we can, knowledge is power.
My nurse will see me again in three months to monitor my weight loss, managed to loose a stone in six weeks, also as a follow up to more blood tests as my kidneys are not quite right.
My consultant has requested to see me in two weeks, so I do feel very looked after by the team.
I was about to edit to mention my kidneys but you were super fast in responding. Thank you so much for your support x
I was given my first fibroscan a few weeks ago and it gave me the opportunity to ask the nurse a few questions. The score for stiffness goes from 0 to 75. Scores of 5 to about 8 are normal. It is all shown on a colour coded chart. Mine was 26.1 so well into the red but still functioning. 75 is liver transplant time. So your score was still in the red but still OK as scores go. The solution is to reduce the fatty content of your liver. So by losing weight you are doing the right thing and well done. I have been waiting on bariatric surgery and a stomach bypass for years. Infact I was on the operating table Nov 2016 having the bypass. However the stomach lies under the liver. The surgeon noticed the scarring on my liver so stopped the bypass and reverted to a liver biopsy. My cirrhosis was confirmed but created another hoop for me to jump through. Thirteen months on I have been cleared for my stomach bypass surgery once more. Hopefully to be done by the end of Feb 2018. Yes drastic but it is my way of dealing with my fatty liver and diabetes.
So that's my story and I wish you well with your weight loss and have a brighter new year.
Glad things are finally moving in the right direction for you with regards to your operation. Hope all goes well for you and you have a speedy recovery.
Currently I'm sticking with eating well and plenty of exercise. I seem to be bruising very easily and having trouble sleeping. Usually for 3 hours at a time then waking in a hot sweat. My urine is quite dark. Also very forgetful. I will mention all of this to my GP when I see him at his request next week. (he's asked to see me after blood test results and to bring a urine sample) also my gums bleed almost every time I clean my teeth. Dentist appointment in February.
Are any of these symptoms common with cirrhosis does anybody else have any if these?
Tinka x
Ps. Wishing you all a happy and healthier new year xx
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