Hi just had phone consultation with my liver nurse feeling very down at the moment I had a biopsy and results are F4 cirrhosis, last time I saw my hepatologist back in November after fibroscan he put me through for CT scan and then biopsy and explained that I could have Fibrosis or cirrhosis when I asked if cirrhosis was curable he said no and life span was 9-12 years so hearing today that I have cirrhosis has scared me. I asked a list of questions I had prepared and one of them was if I countinue to eat healthy loose weight and exercise which I have been doing can I maintain this so there would be no further scarring but from what she said was there is no guarantee that the scarring would not get worse but I need to continue doing what I’m doing. Also she sending me for a bone density scan has anyone had one before are they ok. I’m also having endoscopy, my ALT was47 and my spleen was normal size my platelets were down to 98. I also have gallstones which I’m waiting to go in and have removed.
Sorry for long post but any advice would be much appreciated even though I thought there was a chance I had cirrhosis I don’t think I wanted to believe it but today has been a reality check. My cirrhosis is not related to alcohol but Nash
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Janden12
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Hi Janden, whilst it's scary to get that confirmation of a cirrhosis diagnosis it isn't necessarily all doom and gloom and you might still be able to heal some of it and slow/stop progression if you maintain your healthy living regime and keep tacking the fatty liver issue.
My hubby has now had a cirrhosis diagnosis since April 2012 - his due to auto immune liver disease. He cycles most days and keeps generally well after an initial period when he actually had decompensated cirrhosis and was even listed for transplant for 10 months but delisted as he stabilized.
Hubbies consultant has patients with cirrhosis on his books who have had a diagnosis for 20+ years and are no where near either deaths door nor transplant.
Now you have a confirmed diagnosis they should implement the minimum monitoring standards of 6 monthly ultrasounds, 6 monthly bloods and monitoring or any potential symptoms. If you learn more about the condition you should be able to do a bit of self-monitoring so you know what to look out for in case of deterioration. BLT page on cirrhosis is good for that (don't obsess about it but just keep a quiet watch) britishlivertrust.org.uk/in...
The DEXA/ bone scan is a very simple, painless and stress free scan, basically you lie on a flat bed and the scanning arm passes over you. Hubby has had two (5 years apart) to keep an eye out for osteopenia (which he has) and osteoporosis. NHS page tells you all about it:- nhs.uk/conditions/dexa-scan/
Life is for living so knowing you have a condition means you should focus on making the absolute most of life.
Thank you Katie I am trying to think positive the nurse did say I would have 6 monthly checks.I also asked if I there were any trials that I be considered for.I have been doing some research and the university of Edinburgh are researching Macrophage cell therapy apparently they have completed 1st trial on humans have you heard anything on this.
Hubby is under the RI of Edinburgh - sounds like they are opening recruiting for patients for the trial from Glasgow and Dundee.
Can patients take part in a trial?
Currently patients with established cirrhosis are signed up to the trial via clinicians within NHS Lothian. Soon this trial will be open to patients in Dundee and Glasgow, however there are complex selection criteria and they will once again be signed up via clinicians. Patients cannot sign up to take part in a trial via the Centre for Regenerative Medicine.
If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)
Try not to panic. It’s a natural response and I’m sure you are left with more questions than you have answers for at the moment. I was diagnosed with cirrhosis in March 21. I had no idea I had liver disease and was in hospital at the time with a deep rooted infection. I was very ill to start with. Mine was caused by alcohol. I’ve obviously knocked that on the head, eaten well and in line with my dieticians advice, exercised and generally kept a positive attitude. I feel better than I have for years. I run a couple of miles a day, ride and take no meds. My bloods are normal, my muscle mass is all back and my latest scan shows nothing nasty. My consultant says that he has a lot like me on his books and it’s a ‘six monthly chat and off you go’. It doesn’t stop me getting worried before it, and I’m always keen to know my blood results and ask the sonographer straight away if there’s any problems when I have my scan, but I’m living a normal life. The only thing that reminds me I have cirrhosis is a bit of tiredness if I’ve done too much. The BLT helpline is great and I’m sure if you gave them a ring they’d be able to answer any questions you have. Also your liver nurse is there to help...and I’m sure she will be used to getting calls after people have first had a diagnosis. So ring and ask. Try not to worry and find out as much as you can as it will reassure you. One word of caution....don’t google.
Thank you for your advice it’s just a lot to take in at first my mind keeps thinking I am going to become ill any day and what’s the rest of my live going to be like. I know I shouldn’t think like that, it’s just from what I read it’s a very unpleasant disease. Up until I got my results I was thinking more positive but hearing something there is no cure for has put me down
Sorry for sounding so depressed I’m sure no one wants to hear that, I’ve recently lost my brother through heart attack funeral is this Thursday so I know I should be grateful that I am still here.
I will fight this I just think my heads not in right place
Which isn’t surprising....you’ve also just lost your brother. Your mortality is staring you in the face. When we’re younger then death seems a long way off and then as we age and those around us start to pass away it’s starts to feel a whole lot closer. You’ve also had a chronic liver disease diagnosis on top. So ease up on yourself....you are going through a lot. The question for you is ‘How do you feel physically? Do you feel ill?’ if the answer to that is ok....then keep telling yourself it’s possible even with cirrhosis to continue to feel like that. Try to focus on the here and now not on the future. No one can predict that, not even doctors.
Hi Janden, when my Mum was diagnosed with chronic liver disease (PBC) she was told she had 2 years to live. She survived 22 and lived to be 75. Livers are notoriously unpredictable so take this news with a pinch of salt and keep doing what you’re doing.
I’ve had 2 dexascans. Just like having an x ray. Lay on your back for the first image with pillows go get you in the right position, then roll onto your side for the second. They do mine at a private hospital so I even got a free coffee 😀
Sometimes you just have to wallow for a bit before you can be positive so don’t beat yourself up and don’t feel like you have to put a brave face on it all the time. Everyone on here understands.
Bless you. It’s a shock when you first get diagnosed but I am ten years on from my cirrhosis diagnosis and life is ok. Mine was due to alcohol. I have abstained for the 10 years and have learnt my lesson.
Listen to advice from the Hepatologist and specialist liver nurses. You are at the start of your journey but please be reassured it’s not all doom and gloom. You can live with cirrhosis, not perfectly, but I thank god every day when I wake. There’s loads worse off than me and hopefully your life will be a long and happy one too.
Don’t worry about the Bone density scan. I had another one last week. They are one of the simplest scans to have.
Hi janden12 ,First off my condolences on the loss of your brother.
Please give yourself time to grieve , take one day at a time or an hour at a time if it helps .
Totally agree with everything that everyone has replied to on your post .
Cirrhosis caused by whatever reason is always a rollercoaster ride
I was diagnosed 14 years ago ,alcohol related, 6 months diagnosed left to live ,hospital for 6 weeks, was drained 3 times due to ascites, the list is endless but im still here !! .thankful for the smallest things in life ,even just waking watching TV on the evening as daft as it seems to my eldest son whom has never grasped my illness ,but then I think he doesn't want to but hey ho !!
Please try not to worry , initial diagnosis is always a shock, I did not realise how very poorly I was for many years as my knowledge on liver disease increased, I do have a few more ailments than I did last year but I listen to what my body tells me .
Listen to your hepatologist, liver nurse etc .. always make a list of any questions to ask at your check ups , however trivial you think they may be .
Diet is important , reduced salt intake ,no alcohol , fresh veg fruits etc. Don't get me wrong I do have chocolate and ice cream oh and curry 😋 but not over doing it I may add lol .
Thank you everyone for your kind replies you are all so supportive. I also spoke to the nurses at the liver trust today they were very good would 💯 per cent recommend them.
JansenI too was diagnosed with cirrhosis. From PBC, (primary biliary cirrhosis )back in 2016. It’s six years later. I am holding my own. Actually I have liver scans every six months. And it has not progressed, at all. So I think a it like this. No one has promised tomorrow. And we just go on living our lives. The best we can. Of course, I don’t drink any alcohol. Hardly ever did anyway. And I eat clean and exercise. So I hope this gives you, hope.
No. I was as matter of fact was having a colon resection surgery. Due to diverticulitis. When the surgeon saw my liver. And that started it all. I then had labs that came back, out of range, for the hepatic panel. Also had a liver biopsy. I do get tired at times. But I’m still working, and I’m 65 years old. So I can’t blame everything on my cirrhosis. I do occasionally, I have itching. But I take children’s Benadryl. For it. Other than that. I have no other symptoms.
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