Fibroscan results terrible but not unexpected

[POSITIVEMUM3]

So took hubby for fibroscan today. He was diagnosed in sept and we've had ultrasounds CT scan ascites drain X2 and on lots of meds. Also been told it's stage 4 cirrhosis so pretty prepared but fibroscan was 74 and confirmed F4 cirrhosis. We knew that it'd be high but still tough news. Thank goodness for all of you !!

[AyrshireK]

My hubbies consultant has always said it isn't worth doing a Fibroscan because it adds nothing to the diagnosis - we already know you have cirrhosis! Hubbies liver has been variously described as shrivelled and shrunken, like a sultana and all manner of other descriptions. It's all about dealing with the side effects and accompanying issues from now on in.

Best wishes for Thursday.

Katie

[POSITIVEMUM3 in reply to AyrshireK]

Yes we've been dealing with all the consequences for several months now. Such a rollercoaster! Hope your hubby is stable x

[AyrshireK in reply to POSITIVEMUM3]

Stable (ish), none of the horrid decompensation symptoms (thankfully) but cirrhosis induced diabetes the latest challenge to hit us. Currently awaiting a phonecall back from liver specialist dieticians to see how we can manage this additional condition.

All the best to you both, Katie

[POSITIVEMUM3 in reply to AyrshireK]

Oh dear you don't need more to deal with!!

We've had ascites oedema itching sore hands which were very very dry extreme tiredness which is hard to manage. Trying to sort the sleeping so he could go back to work especially as works from home x hope you get answers soon

[AyrshireK in reply to POSITIVEMUM3]

Thankfully other than hubbies initial massive upper GI bleed the worst of the symptoms haven't yet hit and hopefully won't. We keep on plodding on dealing each day with what ever gets sent our way.

Hopefully your hubby can improve or get to a place where transplant might be considered. Sadly, the sleep issue tends to go hand in hand with cirrhosis - 8 years on from diagnosis this together with the chronic mental and physical fatigue remain my hubbies most obvious and debilitating symptoms.

If your hubby isn't on Rifaximin and Lactulose it might be worth asking about those - sleep disruption can be a symptom of Hepatic Encephalopathy which might ease with treatment (though hasn't really stopped in hubbies case).

Katie

[POSITIVEMUM3 in reply to AyrshireK]

Thanks Katie

So useful to speak to a spouse! He is on lactulose but not rifaximin. We have the consultant thursday so will ask about that so thank you. I think they all get different symtoms and different levels of them. Does your husband work? I just wish we knew that things will improve in months to come but there's no way of knowing this!This means we are having to consider all sorts of scenarios re work. We're both 50 so only young in terms of working years!

Karen

[AyrshireK in reply to POSITIVEMUM3]

Unfortunately my hubby doesn't work - all he's ever worked at all his days was as a welder in heavy engineering so he physically could no longer do that, he gets hand tremors, welding often involves kneeling, bending, lifting and enclosed spaces so absolutely no way he could do it. Can't concentrate long enough, struggles with instructions, sticking to task and there is no way he'd be deemed safe enough in an engineering environment. Doesn't drive any more either. He'd struggle to learn new things too.

Hubby was only 51 at diagnosis (58 now) - i'm 46. It certainly does wreck lives - financially we are currently living on hubbies inheritance as that took us over the savings threshold for the ESA (Support Group) he had been getting. He gets PIP which will hopefully continue - just did the renewal form again over the weekend.

I am self employed (when hubbies illness allows) travelling round schools bringing kids history projects alive (I am like a female Mr Benn - you just never know what costume i'll be in next!).

Katie

[POSITIVEMUM3 in reply to AyrshireK]

I love what you do Katie! I am a primary school teacher and tutor privately too. I went part time this academic year and a week before started in a new school two days a week he was diagnosed! So now we need to decide if I need to go back full time. He is in IT and does work from home so his job could be possible. He just needs to stay awake hahaha

Never mind him being ill and all that goes with it, it is the lifestyle consequences for us both and the family eg holidays etc

Has he improve since diagnosis or has it just got different?

Karen

[AyrshireK in reply to POSITIVEMUM3]

Hubby was dreadfully ill in 2012 and once they'd dealt with the varices and his splenic artery aneuryms he was listed for transplant - he was delisted after 10 months because bloods stabilised which took him out of qualifying criteria for t/p.

He has never had ascites, the itching or even looked particularly jaundiced (apart from in 2012) for which we are greatful. He was skeletal thin and put on a special diet which successfully put weight on.

I reckon he is no worse or no better since diagnosis - it annoys him big style when doctors say "Oh you look well!!" - when inside he feels like death warmed up.

We just have to adapt to this life that has come our way - we married post diagnosis and he was ill when we met though we just didn't know it was this. His condition is due to auto immune hepatitis which had burned out before we knew he was even ill so they can't treat the cause. We just keep our fingers crossed he remains stable. He is still under the watchful eye of a specialist as the transplant centre though so if anything were to 'go off' they would hopefully be on it a.s.a.p.

All the best,

Katie

[taylor50plus in reply to AyrshireK]

Hi, I have the cirrhosis & diabetes, last year was the cirrhosis diagnose, June, the doctor has put me on injections, vitozia, jeez, you feel like crap, but the weight drops off, the only thing i find really hard to deal with is sleep, I sleep most of the time, its getting better though... hope you feel better soon

[davianne]

Hi Karen,

I'm sorry to hear of Hubby's fibroscan results, but at least you and he now know what you are dealing with. Hopefully, now he will behave himself, and do all the right things to improve his future. I was F4 cirrhosis when diagnosed, and although that's still the case, through being a good boy, my life has improved no end. I pray that will be the same for your Hubby.

David

[POSITIVEMUM3 in reply to davianne]

Hi David

He's being doing all the right things since his diagnosis and no alcohol since august. He's just so tired and his hands so dry and painful.gets itching too.

We both like timeframes so this is a nightmare cos noone can say in three months...in six months...

Is this his new normal or will it improve? I can't envisage the rest of our lives like this! Tough road

Thanks

Karen

[davianne in reply to POSITIVEMUM3]

Hi Karen,

The new normal will improve with time. His cirrhosis will stabilise, as mine has, but I my experience, there will probably be new symptoms to deal with unfortunately. As an example, my itching has gone, my episodes of HE are less frequent, but as my spleen has grown to twice its normal size to help out the liver with its functions, it now causes pain. My tiredness and joint pain are still with me though. Of course, everyone is different, and maybe some of my issues are due to my age ( 72 years), but others here say they have relatively few symptoms, so I hope and pray that your Hubby is one of them.

David

[Hidden in reply to davianne]

Ol' man liver,

Dat ol' man liver

He mus'know sumpin'

But don't say nuthin',

He jes'keeps rollin'

He keeps on rollin' along.

Long ol' liver forever keeps rollin' on...👍😜

[davianne in reply to Hidden]

Fecky, how long did it take you to write those lyrics🤣🤣🤣

I think I might have heard them before🤔🤔🤔

Plagiarism becomes you😁😁😁

Nice one👍👍👍

[Hidden in reply to davianne]

Dere's an ol' man called de Mississippi

Dat's de ol' man dat I'd like to be.

Paul Robeson version, could that be the wan back in the day. 🙄

😜

[Mill1 in reply to davianne]

Hi David

This is my first time on here and reading through posts, I’m constantly worrying about my life span, it never ever leaves my thought, I have been diagnosed for about 4 years now with alcohol cirrhosis, I noticed your age, can I ask how old you were when you were diagnosed, I read many places on life expectancy and all different, thank you

Deb

[davianne in reply to Mill1]

Hi Deb,

Welcome to our friendly and knowledgeable forum.

I was 69 when diagnosed, and like you I was worried about my life expectancy. I have F4 cirrhosis, now compensated, after giving up alcohol immediately I was diagnosed, and staying dry. That was 3 1/2 years ago now. Prognosis was a worry to me as well, but with help on here, and reading others stories, I realised it's not necessarily a death sentence, and with good management.....diet, exercise etc, I could deal with it. I do struggle with the diet bit though, as my habit of drinking turned into a sweet tooth, namely chocolate, which I never had before😊

As you probably know cirrhosis does bring with it many symptoms daily, and we just have to deal with them as they occur.

I hope this helps,

David

[Mill1 in reply to davianne]

Thank you for your kind reply, my health seems ok at the moment, apart from taking the medication life seems normal and am finding it difficult to get my head around it all, think I’ve been looking on the internet too much and seeing, 2yrs - 5 years to live, I’m wanting reassurance that everything will be ok but I know I can’t have that.

Thanks again

Deb

[davianne in reply to Mill1]

Please Deb, stay away from Dr Google.......he will bring you down.

We have all consulted Dr Google when we first started on this journey, but the British Liver Trust has loads of info....accurate and freely available for us, so use them instead, or the NHS website.

I too spent a long time trying to predict my own demise, but realised what a pointless exercise it was.

My best tip to you is enjoy life when you are able, and try not to dwell on the future, or it will pass you by, whilst your thinking about it.

Take Care,

David

[Hidden]

Hi

I'm sorry to hear of hubby's fibroscan result, but at least your hubby knows exactly what he's dealing with now. Does he have a liver nurse he can contact? Love and hugs to you both Lynne xxxx

[SRE3]

Hi my husband also no alcohol since August but sadly too late I fear he has had bleeding varices ascites he has been type 2 diabetic but on insulin large doses since last August he has had to retire early and I work from home to look after him he isn’t able to self inject due to shaky hands. We’ve just seen dietician as he has been on fotisip compact for 6 months but they want him to stay on them to keep his weight up. The lactoluse and rifaxamin do help keep the HE at bay def ask about them. He sleeps regular 18 hours a day, he is very unsteady on feet and we now use a wheelchair when we go out: I find our liver nurse is wonderful she is always there to offer advice. Keep strong

[POSITIVEMUM3]

Yes work is a big discussion here. He does work from home but hasn't since Oct. I can't as I'm a teacher! His sleep pattern is all over the the place hence not working ascites yep! Oedema yep! Very sore hands and random blisters on feet which are sore. Think have avoided HE so far but his processing is slower.

Thanks for replying to me x