I’m 55 (almost 56), female and was diagnosed with NAFLD with cirrhosis in 2021 ( possibly 2020 as a letter went missing). Every day since then I am so worried and constantly think about death. I am beside my self and don’t know what to do. I have lost more than 30 kilos (international as I was shocked into it) and my LFT’s have gone from abnormal to normal. I have type 2 diabetes but have now reduced all meds as a result of losing weight and only take 500mg of metformin a day as my last test said my sugar was at 33. I have 6 monthly ultrasounds and bloods. I have a 9mm and 12mm lesion and nodules. Recently had a fibroscan and my Kpa was 42.1 which sent me spiralling again. I enjoyed my food and alcohol previous to my diagnosis and knew I had NAFLD but was not really aware of the true severity of it. I still have a glass of wine at Christmas and maybe on other special occasions but that is only the one and rarely, probably totalling 4 in the last two years and my liver nurse did say it wouldn’t hurt me. I feel so scared and like I have no future and all my dreams of a long life and grandchildren have gone. Sorry to sound so needy and depressing but I just feel so hopeless.
feel hopeless and scared. : I’m 5... - British Liver Trust
feel hopeless and scared.
With all your results going in the right direction you should be starting to think more positively about life. Even with cirrhosis there is absolutely no reason why you can't live a long and positive life.
My hubbies story has been on here so many times folks must be bored of it but I share it as hopeful inpiration - he has full on cirrhosis having been diagnosed as decompensated back in April 2012. Do you know what he's doing just now, this minute ?? ......... he's out on his ebike hoping to get some training in for our upcoming month long caravanning and cycling holiday in the Cairngorms. He's 62 this coming week and it will be 11 years since he was in HDU having almost died from burst varices.
You have to get away from dwelling on your diagnosis and get on with living a life ....... even if it is different that the one you planned to have.
Katie xx
Thank you for your encouraging words. It’s great to hear your husband is doing well and may it continue. Hearing other people’s accounts does help immensely. I will do my best not to dwell on things. Hope you have a lovely holiday 😊
Has your liver stiffness dropped since you were first diagnosed ?
I am like you, maybe type 2 DM has caused your NAFLD to develop quicker than in non diabetic people.. Your weight loss is phenomenal, it should of helped your scores, BTW fibroscan also measure fat content in liver as the CAP score, you should also check if this is going down, eg less than 300 maybe more like 250 ish.
D
I haven’t had a cap score sent to me but I will ask about it at my next appointment in September. I had a fibroscan a few years ago but didn’t get the results from it so I also need to ask about that too. Going to knuckle down and get the rest of the fat off my stomach area too and hopefully that will help. Thank you for your reply
Hi, it sounds as if you’re doing really well liverwise, but you’re struggling emotionally. Have you talked to your GP about how you’re feeling? Maybe some counselling or a short course of antidepressants would help turn things around?
My Mum had PBC so her liver was under constant attack but she still lived to be 75, saw 5 grandchildren grow to be a teenager and saw her eldest grandchild graduate.
Livers are resilient and it sounds like yours is doing well. Keep reminding yourself of that and have a chat to someone about those dark thoughts. You deserve to be happy 🌷
Thank you for your kind words. It’s encouraging to hear about your mum and gives me some hope. Unfortunately my Dr seems to be completely out of touch with my Liver nurses, it’s almost as if I’m two different people to them. I will speak to my liver nurse about it again though, she seems to get the job done.
Bless you. You have come so far and it’s time for you to stand tall and live your life. Who knows how long anyone has left! I was diagnosed with cirrhosis nearly 11 years ago and I’m still here enjoying every day. I don’t have a perfect life but who does? Time to love yourself and stop worrying. Take care
Thank you
Do you have any symptoms of portal hypertension ?
Varices, ascites, even hemorrhoids can show small capillaries are loaded up.
An endoscopy will show if any of these are present.
This is the real sign of cirrhosis as the veins from your organs reduce and even reverse blood flow. This is the problem with cirrhosis and is what leads to serious illness, not the actual cirrhosis itself.
Your ultrasound measures portal vein function and flow. If this is normal then it’s a good sign the cirrhosis hasn’t progressed and is in fact decreasing.
Fibroscan doesn’t know what is making your liver stiff, with BMI over 34 fibroscan is considered inaccurate.
As a type 2 DM, your liver is slower to process fat and quicker to store fat,
So your progress will be slower than a non diabetic.
Weight loss needs to be gradual 1 kg/month.
Just set yourself a BMI goal , say 35 achieve this over a few months.
Then another BMI goal of 30 and achieve this over a few months.
In fact it may take a year to achieve your goals and not months,
Buts it’s all progress in the right direction.
D
Read the second post in this thread. There are many stories like this. You are already going in the right direction, that is completely clear. Take it easy, there is no reason you can't be around for some more decades. (Unless there is something else going on that we dont know about). My Hep says his goal is to make sure his patients die of something that is NOT disease. Die at 85 in a car crash or something. And his patients work towards that with diet, excersize, etc.
Anyway, read through this -
thank you. You have definitely lifted my spirits today ❤️
Try to keep positive. The one thing that has become clear from this forum is that a lot of people figure out how to manage their issues and can live for a long time. I can’t tell you how much the forum has helped in the first few months of this journey.
Best wishes and keep posting. We’re all here for you.
thank you
I sympathise with you , I’m in a similar state of health but waiting gallbladder surgery .
My weight loss (intended ) has helped overall but I think of what is going to happen next or how long before my liver deteriorates and how long have I got before it kills me .
I have not discussed my worries with family and friends .
I’m usually the voice of reassurance and common sense but I cannot escape the frequent thoughts of dying .
I’m a health care professional and knowing in detail of worst case scenarios has me questioning everything about my care .
I am planning to retire later this year so I can concentrate on me , not only on my physical well-being but on my emotional health too .
Be kind to your self and try to concentrate on the positive.
Good luck x
Thanks for your comment. I too have always been rational but optimistic nut this has knocked me for six. I read positive stories about people who have lived with it for a long time and can only be hopeful. It’s difficult to be positive with it hanging over your head isn’t it and not knowing what the future holds. Good luck with your treatment and all the best for the future.
You will have specific answers soon because if your liver is in serious trouble they will not remove your gall bladder.
I already had my gallbladder removed in 2005. Way before I even had the NAFLD diagnosis so that’s way gone 😊
Hi, I was also recently diagnosed with cirrhosis - in January. I was told I have ‘marked lobulation and fibrosis’, the terms fibrosis and cirrhosis have since been used interchangeably. Originally investigations were for gall bladder stones (which I evidently have) and to rule out cancers (thankfully ruled out!). I have thus far had a meeting with hepatology - a fibro scan was 10.4, lots and lots of bloods taken, and investigations ongoing. I have just had a liver ultrasound, and in early May will have a liver biopsy.
Like you, I was terrified. Telling my adult children was very painful, I felt ashamed that I have probably caused this myself. I am not alcohol dependant, but have enjoyed regular drinks over the years, and probably a little more at social gatherings. Like you I thought my life was limited, and was devastated.
Through the B.L.T. and the wonderful people on this forum who share so much, I have calmed down. I now have hope. I also feel I have a little control. I stopped drinking the moment I was told about my liver disease ( Jan 9th). I excercize and walk a lot anyway ( I have a lovely dog). However, through this forum I have learned about the importance of diet and the role food has with the liver. I have also learned a myriad of things that have helped me to understand my condition in ways my fantastic GP and specialist are simply unable to. So a huge thank you to everyone.
I read this forum every morning and I cannot tell you just how much it has helped me - I hope it helps you too. All best wishes for your future.
Thank you. I haven’t been told about any specific diet to date. I must look into that as everyone on here mentions it. Hopefully we can beat this to the best of our ability. I live in hope.
HiYour dreams have not gone, you are just imagining thhey have. The research consultant said it is possible to reverse all the way from NALD to Cirrhosis.
The last question to him was can Cirrhosis be reversed, yes.
Do not drink, why would you want to celebrate with poison?
Focus on being the best version of yourself physically, mentally, spiritually and to those you love and love you, everything else will look after itself.
Pm if you need someone to chat to
IRO
Thanks. I would love to know how to reverse it. Is there anywhere specific to read about it? I thought I was doing enough but obviously I’m not.
Hi You are, it takes time
Oh bless you. Please ring your liver team- and speak to them! ( I myself have been living under a dark cloud and am fighting with GP just to get any answers!) I know it's like being handed a death sentence- but from the sounds of it you are very proactive- wow!!! Losing weight etc- AMAZING!!! if you don't feel you can actually say what's on your mind take a letter to your specialist - I'm sure they will want to help you emotionally as well as physically xxx
Thanks for your reply. I rang the liver trust nurses today forgetting it was Sunday but have sent an email to them. Whilst my liver nurse is lovely and wonderful - I would never question that - I also feel that she is being kind and skirting around things as in only giving me the better results and keeping the worst quiet. I know this sounds daft but it’s always in my mind. I would like to see my consultant but feel bad asking it’s as if I’m saying that the nurses aren’t good enough when I don’t think that at all, they’re angels. Who knows if a consultant could put me in a better position anyway. All the best to you regarding your own health.
Keep in touch xx it's a scary path we are on, but we can't let ourselves fall off it! Xx
Try, try not to. worry too much. It seems you have made real changes on the medical front so well done. And the fear of death? I don’t know but some religious systems DO say “ learn to die before you die”. That means, I think, that after you have done that you take the joy of living and being alive much more seriously than before. Each day as it comes. I am on this site because I lost a partner to cirrhosis when he was 44! You are in the right place. You have and have shown considerable courage. And all will be well. Love and light! Xxx
Thank you xx
The saddest thing I see in these post is people giving up hope and letting fear in their head. I lived 32 amazing years after I received my diagnosis before I had any health issues where I needed to start liver specific medications.
That’s very encouraging to hear. Was your diagnosis cirrhosis? Hope you are still doing relatively well.
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