Sleepless night again : Hi After... - British Liver Trust

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Sleepless night again

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Hi

After receiving a diagnosis of Scarring of my Liver in an unrelated CT scan with no symptoms and normal blood and Liver function tests I was told to not worry and get on with my life. I totally panicked and demanded for referral and eventually went Private and saw a top Liver doctor who felt it was incidental findings but I still insisted on having a scan and a Fibroscan revealed Cirrhosis.

I was told it was early stages and removing alcohol could revolve the problem.

I haven't touched a drop since last December and wondered how long it takes for Liver to mend?

I am sorry to come on here and waste your time but with Covid restrictions it is a very worrying time to deal with things on your own and I am 67years old.

51 Replies

Cirrhosis is unlikely to completely mend but you can continue to improve your liver with healthy eating, continued abstinence etc. It's taken a long time to get scarred so there isn't an overnight fix.

Try to put it out of your mind, just live well, since you are not symptomatic the damage can't be too horrific. As I said in a previous post you just have to keep on and this is not the end of the world.

My hubby hardly bothers with the fact he has cirrhosis he just gets on with life, living the best one he can. He makes the most of good days and writes off the bad.

As you've previously said it's the stress and fear of it all that is causing most of your issues just now. Try to find an alternative outlet for your energies. My hubby is doing loads of local walking just now and enjoying every minute of being out and about.

Katie

Bikafella profile image
Bikafella in reply to AyrshireK

Too right Katie !

Hi, as Katie said, just put it out of your mind and just try to live well. I was diagnosed very many years ago but it hasnt stopped me from living a practically normal life. Just listen to your doctors, avoid alcohol, eat healthy and exercise.

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Hidden in reply to oxaram

Thank you I have no symptoms at all at the moment and don't know what to expected and how long Ive got The internet has terrified me and I am grateful to hear from you

AyrshireK profile image
AyrshireK in reply to Hidden

None of us know 'how long we've got' and as you don't have symptoms then your liver is doing ok. Concentrate on living life to the full, looking after your liver as you go. Dwelling on it is only going to cause more anxiety, more symptoms and a miserable existence.

At least this has been found before you've become ill, you can do a lot to improve your liver health and as none of us a guaranteed a tomorrow - live for today. Live the best life possible.

Katie

My consultant said if I follow the rules I will die with cirrhosis, not because of it.I was diagnosed by chance as well, no symptoms at all.

You will probably get 6 monthly check ups now.

Mainly because of the very slight increased chance of liver cancer.

Emphasis on VERY slight!

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Thank you Roy it's a terrifying diagnosis when you have no symptoms and puts your life on hold with no medical support I am 67years old but would love a few more years with my grandkids x

Millie09 profile image
Millie09 in reply to Hidden

Hi ,I was diagnosed 13 years ago with cirrhosis, end stage I was, 6 months left to live if I had not stopped drinking.. yet here I am ! .. abstinent from alcohol, low salt diet , I have the usual fatigue days, and mild what I call forgetful days ,insomnia but I get on with life, I don't think of my cirrhosis, only when I have appointments so please don't worry ..

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Hidden in reply to Millie09

Thank you xx

Millie09 profile image
Millie09 in reply to Hidden

Your most welcome x

Worriesalot profile image
Worriesalot in reply to Millie09

Have you experienced funny taste?

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Hidden in reply to Worriesalot

I haven't or any other symptoms

Millie09 profile image
Millie09 in reply to Worriesalot

No , nothing springs to mind xx

Worriesalot profile image
Worriesalot in reply to Millie09

Can’t help thinking I’m in a bad way. I definitely have it, musty and sweet. Doesn’t last long. I had great day Friday, but shaky on wakening and blurred vision. Hope you’re having good day.

Millie09 profile image
Millie09 in reply to Worriesalot

Why do you think that? . I'm sure its nothing serious, I can't say if my breath is bad as no one has mentioned it .I'm having a good day so far thank you 😊, hope you are too and please don't worry xxx

Worriesalot profile image
Worriesalot in reply to Millie09

It’s just the shaky feelings and bowel trouble, blurry vision and needing Lactoluse every day, now my hair is coming out. I don’t know whether to go to a&e because doc just says I have to be fine with bloods and a scan.

Millie09 profile image
Millie09 in reply to Worriesalot

Sounds to me like bad anxiety! I had awful feelings of shaking, loss if hair, blurred vision ,upset tummy, non sleeping, all down to my nerves ,I did have 2 years of therapy and alcohol counseling which has given me the tools I need to help me with day to day living, I think personally your over thinking things, hence why your feeling the way you do ,.you don't have cirrhosis as that was ruled out by your scan .maybe you should gp back, see your doctor ask about short term anxiety meds or maybe antidepressants? .xxx

Worriesalot profile image
Worriesalot in reply to Millie09

My tummy’s not upset my bowel has just packed in!

Millie09 profile image
Millie09 in reply to Worriesalot

I need lactulose , but mainly for my head when it gets Muddled up , my upset tummy was more like butterflies than constipation, have you looked at your diet ? Maybe .. xx

Worriesalot profile image
Worriesalot in reply to Millie09

No, it’s not that. I eat loads of fruit and salad and fibre. Thought you suffered the same way. Wish I could work out how to PM. You’d be sick of me then! Having a rest and think of happier times in Shropshire when in caravan.

Millie09 profile image
Millie09 in reply to Worriesalot

Oh I see , I was just thinking of alternative reasons etc.. If you click on my profile picture ,it should then lead you to be able to send a message to me .

If I can help then I will

Oh Shropshire is lovely! Xxx

Worriesalot profile image
Worriesalot in reply to Millie09

It’s says click on something to send PM, I do, they then say they will send e mail and they don’t! Hope it gives the younger ones a laugh, I’m hopeless!

Millie09 profile image
Millie09 in reply to Worriesalot

Lol , I did send you a private message, maybe try clicking on that lol 😆

Worriesalot profile image
Worriesalot in reply to Millie09

It’s crazy. They say click on e mail that they’ve sent to prove I’m genuine, I suppose but where is it?

Millie09 profile image
Millie09 in reply to Worriesalot

I'm not sure ? As its not an email that you send but just a message like we are doing now but private between us ? Xxx

Worriesalot profile image
Worriesalot in reply to Millie09

Who could I contact?

Millie09 profile image
Millie09 in reply to Worriesalot

Have you tried clicking on my profile photo ? Then above that you will see something saying hub , then a picture of what looks like a little kite ? Well thst little kite ,if you click on it you can send me a message then privately xxx

Worriesalot profile image
Worriesalot in reply to Millie09

I get so far and see PMs but it then says to click on e mail they’ve sent, where is it I ask? 😆

Millie09 profile image
Millie09 in reply to Worriesalot

Lol , you'll get there xx

Worriesalot profile image
Worriesalot in reply to Millie09

Seem message but says I can’t reply because of unverified e mail address.

Millie09 profile image
Millie09 in reply to Worriesalot

I've sent you a private message, see if you can see where it is xx

I was the same had a CT scan for something else and that identified liver scaring so was referred for a fibroscan and boom told I have stage 4 liver cirrosis. I was dumbstruck and was distraught for a few days. Saw a fantastic consultant and basically I am living life well. Mine if from NAFLD . Yes the odd day I feel tired but then don't know if thats because I've got a 10 year old work full time and am 51 🤣🤣🤣 Please try and stop worrying it does get easier as its still quite new and scary. But please don't let it stop you enjoying life safely my friend xx

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Hidden in reply to sunrise20

Thank you for your positive replyI am in total shock at the moment feeling totally well apart from the shock and mental torture.

Yesterday my 10 year old grandson asked me to go to his Rugby tour next year and I was devastated all night .

I am so glad you are keeping well and holding onto normal living and Ive got to be inspired by you.

Thank you again x

Worriesalot profile image
Worriesalot in reply to Hidden

As long as you don’t drink and check with doc about anything like meds of any kind, you will be fine. Consider yourself a lucky lady. You’ve found out in time.

Hi I found that so difficult to get my head around it as well . It truly is a shock to take it in. However as others have said we are actually lucky as cirrosis was picked up by accident and our livers our still working so called compensated. So please please read all the comments and response on this forum it really is helpful and they have lots of good information to view. Take some time for you, enjoy the simple things the sun the fresh air the countryside. It all helps to make us feel calmer and help with stressful thoughts.

You've got this , don't think the what ifs think of the im going to do xx

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Hidden in reply to sunrise20

Thank you I need to pull myself out of this and enjoy what life Ive got left.

The NHS has badly let me down over this and I am sure I could have handled it better if so many issues hadn't happened with them.

I saw a Robin in my garden today and I sure it was a sign to pull myself together xx

.

AyrshireK profile image
AyrshireK in reply to Hidden

With a well compensated liver there is no reason why you can't go on and live a long and relatively normal life. I've said it on here before, my hubbies consultant has patients on his books who have had a diagnosis of cirrhosis for 20+ years and are no where near poorly enough to require transplant nor at deaths door.

Hubby is 9 years post diagnosis and he was very symptomatic back in 2012 but doing 'ok' at the moment.Don't write yourself off, enjoy life and stop fretting the what ifs.

It's my hubbies 60th birthday tomorrow and we have our rucksacks packed to go hill walking.

Cirrhosis especially when well compensated is something you can put to the back of your mind and get on with living life.

Katie

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Hidden in reply to AyrshireK

Its lovely to hear such positive good times Happy Birthday to your husband Sadly my Birthday was a bad day after receiving an email from the Hospital Consultant confirming the Fibroscan found Scarring on my Liver

Have a lovely trip both of you xx

Ruggerhead profile image
Ruggerhead in reply to Hidden

What was your score on the scan?

OK here's what I know, I am not a Dr but certainly an educated person that could, in my mind go head to head with many so called Liver experts based on all my research in recent times. For starters this is a shock as it was for me. I eat well, exercise, I am not overweight, do not smoke, not diabetic and a small drinker. So i hardly qualified in my mind as someone that was in anyway at risk of liver damage, but here we are. You don't say if you are a heavy drinker, if so that could be the cause and I say could be because not all drinkers have any liver issues, just bad genes I guess. If you are or have been a heavy drinker then that is stage 1 of your recovery, NO MORE DRINK, there are plenty of alternatives out there and as a Grandmother your disco party haze is possibly behind you. Point 2, it is highly unlikely that you can reverse the damage, not impossible as it has been done in literature anyway, but like a scar from a cut it never completely goes away, but here's where you have a huge advantage over most, here's where you turn the negative into a positive, you know and you can arrest its slide, meaning if you had of kept going and suddenly collapsed a few years down the line then you would be to late. Your NOT, look on this as a blessing that they discovered it. I know, like me you are asking WHY? especially if your not a high risker, and the same WHY can be asked by a nonsmoker that gets lung disease. Maybe its your lifestyle in regards diet or lack of exercise. Again you don't mention if you are overweight or a smoker, drinker etc. So here's how you enjoy the next 30 years of your life, you give up drink, you eat a low carbs, healthy BALANCED DIET, that means investing in a nutritionist to plan your New You. You exercise each day, swim, bike, play with the Grandkids. You sleep well and you laugh, you cry and you live life to the full. Actually apart from the drink part, you have the advantage over some 40 year old who is out every weekend blissfully unaware of what they are doing. You know, you are at early stages. If its NAFLD based, just check what medications you are on if any. Also in my mind its a good idea to have bloods taken every 1/4 because from my experience when they tell you your bloods are normal? are they normal for you or normal for the population? You need YOUR normal base line, if your liver is functioning OK ie Alburin, Bilburin production etc then all systems are still good... Look, do I wish i never had this, of course. Has it meant cutting back on things i enjoyed, ie drink, salt, sweets etc, Yes it has, but once you get used to a new healthy you, you will look back on this as a blessing in disguise, you may not be the old you, but maybe you become a better You. You will be fine, and please do not stress and worry, plenty of great miles left in Grandma yet ha. And go on that rugby trip..

Can you help me too Ruggerhead? I’ve had a normal blood panel and scan two weeks ago. Diagnosed in scan with fatty liver, however my bowel has stopped working, I feel shaky at times and have blurry vision, nasty taste in mouth at times. Do you think tests are a mistake? Hair loss too.

Im afraid I cannot help a lot, but lets look at things, you had normal scans and bloods, what scans did you have? and what scan diagnosed you? Bloods can be of limited use in that some people seem to have raised levels others normal. I was confused myself as I had normal bloods, CT, repeated MRI's. Ultrasound etc all showed nothing. Then a Fibrascan diagnosed me arragh. Im not sure if the other symptoms are in any way related, but could they be due to stress etc. I am of the belief that a lot of problems start in the gut, ie with dysbiosis or bacterial imbalance and our system can just be out of whack. Did you have immune conditions tested , I think there are a series of immune bloods you can get just to check ifs it not more of an immune thing? Are you a heavy drinker, overweight, Diabetic etc. And what did the scan show Fatty Liver? or cirrhosis? There is a huge difference..

No little bit of fat she said. That was US. I have been a wine drinker in the past but not had any for months. Spleen, normal size and liver had homogenous echo texture and normal, surely esld wouldn’t look like that? What have you got?

Did you have a fibrascan, a little bit of Fat is simple Fatty Liver, and very common, what you need to know is how scarred it is or isn't, sometimes it seems a standard US is not enough to detect that,

Might pay for private one GP hopeless, tells me perfect LFts and US can’t mean I have cirrhosis, makes me feel like a nutcase. I must have been to drink as much as I did.

Not all the time, otherwise everyone in a pub most nights would be in trouble, genetics, diet, a lot of things come into play. As i say Im not a Dr but like you I asked a consultant if my bloods are good, CT, MRI US how can i have liver disease. Was told that they don't always show up on those, great. You could also look at ELF blood tests, again just more testing.. Regardless you just need to try and lead a healthier lifestyle. Try and look at it as a positive, at least you found out in good time.

My terror is that I haven’t but surely the liver would be an abnormal shape. Fatty liver I don’t care about because I know I can reverse it but if it’s decompensated, I’m too old for transplant and love life so much.

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Hidden in reply to Ruggerhead

Thank you for giving me strength I was a social drinker all my life and maybe topping up the wine glass during Lockdown while reading my book has caused this Scarring

The Consultant asked how much did I drink an impossible question to answer lots but never drunk

I am going back to work tomorrow to try and put this at the back of my mind xx

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Be careful going private I did and got a top Consultant and was told my bloods were perfect and it was incidental my Cirrhosis was found on NHS CT scan only to be told afterwards that Scarring was found on my NHS Fibroscan

Ruggerhead profile image
Ruggerhead in reply to Hidden

Seems a lot of Drs just want to look at bloods and assume all is well.

Surely platelets would be low if there is a problem?

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