Can you have a normal life expectancy with early cirrhosis?

[Kettl]

I was wondering if anyone has good stories of people living to an old age with early cirrhosis.

[Worrysome1]

Take it you’re still worrying? Hope people will respond and put your mind at ease. My anxiety is terrible this morning. I wouldn’t wish this last 6 months on my worst enemy. I’m shaky and too scared to get out of bed. I have read numerous accounts of people living for years with early cirrhosis, I bet there’s thousands who don’t know they have it. If a consultant radiologist can’t see cirrhosis, on US, I pray I’m just suffering from acute anxiety and that’s causing my symptoms. You have had a fibroscan, you have real proof you’ve no cirrhosis. I understand your fear though, it will take you time to believe it.

[Kettl in reply to Worrysome1]

My ultrasound said mild hetrogenous echotexture. Think that pretty much means severe fibrosis or cirrhosis. The scan I had was a shear wave elastography. The kpa for this I think is graded differently to an ultrasound. Yes, I’m still worrying.

[Worrysome1 in reply to Kettl]

I hope someone can put your mind at ease on here. Might be worth you pushing to see Specialist just for a chat, if possible. I am seeing gastro on 16 August so will know more about my condition then.

[Kettl in reply to Worrysome1]

Seeing gastroenterologist in two weeks🤞

[idyllic420 in reply to Kettl]

I have my appointment for August 24

[idyllic420 in reply to Worrysome1]

I have my appointment for August 24

[Worrysome1 in reply to idyllic420]

Hope you have good news.

[Jaygee87 in reply to Kettl]

Hi Kettl.I am presuming mild echo texture is the same as contour where it is no longer smooth. I had the same thing at my scan in January and classified as borderline cirrhosis and have managed to reverse it back to normal. Is yours caused by fatty liver or something else ?

[Kettl in reply to Jaygee87]

Drinking but fatty liver also. I’ve changed my diet. Had some Weightloss as I was feeling unwell and then so anxious I’m struggling to eat much. So only 3 kg off normal weight range. My worries are my symptoms. I had early menopause, have increased veins and Terrys nails. I’m so glad you were able to reverse yours. I so hope I’m in the same boat. Just need to hear positive stories to get me through till I see the gastroenterologist in two weeks.

[Kettl in reply to Jaygee87]

Yes texture.

[AyrshireK in reply to Kettl]

The key word in your scan there is 'mild' - yes there is some change in shape from the smooth a totally healthy liver would be but it doesn't in anyway indicate cirrhosis. It could be a bit of fatty liver or very, very early fibrosis which is corroborated by your fibroscore. If you can tackle what might be causing that change in your liver it should be reversible and yes you can go on to live a long and natural life.

Hopefully your gastroenterologist will confirm this in a couple of weeks and you can get on with living your life.

Katie

[Kettl in reply to AyrshireK]

Thank you. I hope so. I am sorry to put this sort of thing out there when others are in much worse circumstances. I will wait till I see the gastroenterologist. Thanks

[MINTVCX in reply to Kettl]

I have also increased heterogenous echo on ultrasound. I have fibroscan 8,8 kpa (described as F2). BMI about 25. Not sure what is going on (no indication of AIH, alkohol rather social drinking). Good luck.

[Kettl in reply to MINTVCX]

My shear wave elastography came back as 7.9kpa. I am awaiting a fibroscan. Good to know that increased echotexture can just mean fibrosis ( not that that’s not serious). I am starting to feel better. Hope my fibroscan comes back similar and I can keep working on improvement. Have you had your iron checked? Haemachromatosis?

[Splodge60 in reply to Worrysome1]

Please read my thread above and I hope it helps.

[Jimmywaz]

Yes.

[deanw41]

I have: liver is slightly echogenic in keeping with cirrhosis. However liver contour is smooth. Liver is not enlarged

[Jimmywaz]

I just posted my latest update from consultant but just deleted it because I feel a bit like I’m showing off what I have achieved in a year. But you can live a normal life expectancy, even from being told at 1 point there’s a chance I might not see Xmas last year. Chin up

[Worrysome1 in reply to Jimmywaz]

You should show off! It will give hope to others. Well done and I hope you have the best Christmas ever! Booze free of course, but I bet you don’t need telling that! Xxxxxx

[Scrags64 in reply to Jimmywaz]

Be loud and proud. Two and a half years ago I was told the same and actually died twice. My liver won't recover as not diagnosed until stage 4, but change of diet, change if lifestyle and not getting stressed mean that in that time my liver has not deteriorated at all. From weekly visits to the consultant I am now on 6 monthly. We can all do this. X

[Jimmywaz in reply to Scrags64]

I was diagnosed with decompesated stage f4 when in hospital, a year later no water tablets, I take 1 for portal hypertension and 1 rifaximin and vit b, exercise and my latest letter from consultant says my long term prospects are very good. And medically states ( resolved alcoholic hepatitis with residual cirrhosis, continued improvement in synthetic function… that’s it…Job interview today this all very fast?!??

Sorry I didn’t mention I exercise and eat normal no special diet, zero toxins if I can help it… and I’m 38

[Dogbot]

Hi Ketti I know it’s easy to say than to do but please don’t worry until you have seen gastric, if you have stopped drinking got a reasonably healthy food diet and try to get some exercise, I don’t mean join a gym or anything like that go for good walks in some woods or park near you, I picked up a cheap exercise bike and just try to do twenty minutes on it a day, just lately I have had to cut that down but that’s because I’m waiting for a liver transplant and I was in hospital with an infection. Just a quick line about my story nearly 18 years ago my liver packed up and I ended in A&E with the doctor saying in the morning I didn’t expect you to live through the night now nearly 18 years later I’m 66 and going pretty good. So as was said earlier by Ayrshire the key word is mild , keep up the healthy lifestyle and good luck best wishes 👍.Stay Safe All

Dogbot 🐶🌈

[Kettl in reply to Dogbot]

Thank you so much. I am so happy to hear your journey and that you are doing well. I’m going to get off the net now until my appointment. I am walking for an hour a day and trying to keep busy. I am going to get off the net now before my appointment and try and just live life.

[Dogbot in reply to Kettl]

There is always someone that will listen and talk so don’t hide away 😂.Stay Safe All

Dogbot 🐶🌈

[Dylant12]

Hi Ketti, I hope you can take some positive thinking out of this, my wife was very poorly from March 2019 when she was diagnosed with decompressed cirrhosis ,having severe ascites initially having several drains in hospital to remove the fluid back and fore I thought the worst many times, and was told she might not make it to Christmas 2019. Admitted to hospital again part way through July 2019 where they drained another 8ltrs and kept her in for further tests and observation, she eventually stabilised enough to be able to come back home in early September 2019 where we have both changed our lifestyle eating a much more healthy diet and I began by giving her homemade soups and anything to interest her to eat and build her up etc , she has put weight on over the last 21 months or so. ( she weighed just under six stone at one point in hospital, she is not very big at just five feet tall and slight build but that was a low point for her when she was very weak and looked like a skeleton) She is currently weighing in at about eight stone three pounds and feels back to normal there. We have tried to remain positive everyday since leaving hospital taking each day as it comes and trying to make the most of everyday as if it was her last ,over the last year or so.

We have now more good news having visited the liver consultant again last week who is happy with her progress saying he is pleased with the latest blood results etc , we have to go back for a fibroscan next week but basically he is talking about her next visit to see him in about nine months time which is such a massive relief for us both.

My wife has been doing housework again with also minor jobs in the garden during the lovely weather this year which she loves but lost complete interest during 2019/2020, I don't think she went in our garden once, however she does get tired after just a few hours when she initially did far too much but is now getting the balance right. All of this is down to changing and adjusting our lifestyle to suit the condition but not letting it beat us. My wife is seventy years old at present, we are being positive every day and praying she will continue to progress and have many more happy years to come yet, I trust and hope you will do the same.

[Kettl in reply to Dylant12]

Thank you so much. I am so happy your wife is doing better. Sounds like she has a great supporter by her side.

[jazzjam in reply to Dylant12]

This is wonderful news to read, thank you. It is so nice to hear the positives that can come out with this just by looking after yourself a bit better.

[MississaugaLiver]

There is plenty of hope! My hubby had a Terrible 2020. Diagnosed in February, ascites gone with diuretic meds, varies bleed banded in the fall. Dr says he doesn’t expect another incident! All LFTs are back to normal. Our family doc was shocked. The disease seems to have left as quickly as it appeared. He’ll never touch a drop of alcohol again, but that has been the easiest part. Eat healthy, get plenty of exercise and surround yourself with supportive people when you come to a bump in the road!

[Splodge60]

Hello Ketti

I am not sure how you define a ‘normal’ life expectancy. We can all worry ourselves into. an early grave and spend our lives in misery and distraught all the time. I’m not going to dwell on my stuff, only to say that you must, must, must work on ignoring your health anxiety and make the most of your life if you can. I have not always been able to ignore my health problems and diagnoses so I do appreciate, liver cirrhosis is a frightening and difficult illness one has to cope with.

Please try hard to enjoy whatever length of life you have. Take advice from your GP, Consultant, family and friends but, become YOUR OWN advocate and only do what you want to do and when you want to do it. You are right to ask questions of a general nature on this Forum because you will learn such a lot. However, learning and doing are 2 distinct entities and YOU are the only person who can DO THE DOING!!! All we can help with is to share our knowledge and understanding in as kindly manner as possible.

You, nor us here, have any control over when we die and I doubt whether a ‘NORMAL’ life expectancy exists. FYI, this has been my own liver health journey:-

2002 - diagnosed with Diabetes 2

2003 - diagnosed with Severe form of

Fatty Liver - NASH

2019. - Diagnosed with Compensated

Cirrhosis, Metabolic Syndrome

and told I would never be able

to have a Liver transplant

To Date - increased symptoms which

has now put me in the

Decompensated Liver Cirrhosis

category with Stage 4

Cirrhosis

Now. - In hospital with an excellent

Liver team and currently

Having what I am told is a Full

MOT due to severe neglect by

Previous liver team in a

Different hospital (BLT helped)

Future - Probably will die with the no

and extent of health issues I

am experiencing

LIFE EXPECTANCY OVER MY LIVER JOURNEY was probably 75 - 80 years

Current age - nearly 72

ATTITUDE AND EMOTIONS

Over these almost 20 years since diagnosis of a serious liver problem (that I know about), I have experienced EVERY SINGLE EMOTION POSSIBLE =

Frustration

Anger

Dismay

Disbelief

Gratitude

Pleasure

Joy

Etc, etc.

So, my simple answer to your above question is this - Everything that life throws at you can be seen by you as easy or hard but you will suffer some bad and good things in your life because that is what life here on earth is all about - learning and experiencing good and bad things to grow and develop ready for your next journey. How your life expectancy pans out is about how you choose to make the best of it, or not as the case may be. I therefore exhort you, wholeheartedly, to make the best of it for yourself and your current family and friends, plus your progenitors who will be so grateful to you for your example, when you ultimately meet up with them again in the next (more permanent) life.

This life is a temporary testing ground to help us BECOME what we want to be forever. Make your choices wisely and you will then enjoy life, more than I have, (because I did not always know or understand this) no matter how long you live.

Promises I have made (a bit late) to my family - to concentrate on giving them the best of me in the time I have left and spending every ‘living’ moment I have left in doing all I can to help them and myself leave something nice behind, for them to remember me by.

xxxxxxxxxx

[Kettl in reply to Splodge60]

Thank you so much for you amazing insight amd advice. I do agree at the moment I’m not living and I’m certainly not giving as much emotional or physical time to my kids and family due to my health anxiety. I know I need to step back and live. I will take on board your journey and thoughts and try and move on.

[Worrysome1 in reply to Kettl]

Hi, any better? I’m here for you if you need to chat. X

[Splodge60 in reply to Kettl]

Lots of luck on the decisions/choices you make on your journey xxx

[Worrysome1 in reply to Splodge60]

Sorry for jumping in but I wish I had a shred of your bravery. Hope there is a good day today for you and many more to come.

[jazzjam in reply to Splodge60]

Thank you Splodge for this. I hope you get sorted out in the hospital and have some more insight on your latest health. It is a very uplifting post actually, how you see the world and how you are keeping going forward. Thank you so much

[Splodge60 in reply to jazzjam]

I do appreciate your comment jazzjam. Life can be hard for everyone and we all have our weaknesses, especially me. It’s the ‘sweet tooth’ that has been my downfall. I’ve just spent 10 days in a different hospital.with a different liver team. Straight away I was told they were going to do a full MOT on me, the full works. These 10 days have been incredibly hard for me but I am now satisfied that I have answers to many questions about my liver and other health issues that I knew about before. I learnt some new diagnoses (which I would rather not have done), but the key to getting the help I needed, came from contacting the Nurse Helpline on this BLT Forum, as well as some questions and answers you members taught me. It has not ‘cured’ me doing this. I will not ever be cured now as I have too much else going on for a transplant. I could have been helped more by liver specialists 20 years ago, but, in fairness, there was not too much research about NASH and CIRRHOSIS when I first discovered I had a liver problem nearly 20 years ago. The hospital wanted me to stay longer but I could not cope with the noise levels in there and need to be home.now, with my fantastic hubby. And spend as much time as I can with my family. I won’t be writing a lot more on here from now on. I’m satisfied with the help I have received and the only thing I can take with me from this life is the knowledge about what I have been through and experienced and how much I have used that same knowledge and experience to help others - which is my destiny and legacy

I won’t mention particular clinicians or hospitals so please don’t ask me. It is not appropriate in the grand scheme of things. All I ask of each of you is to read my many posts over the years on this site, which will answer many of your liver questions. Good luck with your health.

[MavisDavis]

2 years back stage 4 cirrhosis but compensated and doc said with healthy diet no alcohol I could live a normalish life, from the horses mouth as they say.. Unfortunately, I cannot abstain and am starting to show signs of decompensated now...

My posts are mainly for people like me and trying to give some type of timeline to some one else...

[Worrysome1 in reply to MavisDavis]

I drank bottle of wine most days for 30 years, can’t believe it now after being completely dry going on 7 months. What about counselling?

[Kettl in reply to Worrysome1]

Oh I hear you. Can’t believe I’ve been so stupid.

[Worrysome1 in reply to Kettl]

You won’t have done it as long as me. I think you’ll be fine. I can’t seem to send private messages or I would. Xxxxxx

[Kettl]

I am so sorry you are having difficulty with alcohol. It’s a crafty bugger.

[Worrysome1 in reply to Kettl]

Hope you’re feeling better. X