Shocked : Just wanted to let you all... - British Liver Trust

British Liver Trust

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Shocked

jojokarak
jojokarak

Just wanted to let you all know I had a fibroscan yesterday and the result isn't good it's 22kpa and classed as f4 damage I am in total shock at moment especially as it is 2 years tomorrow since transplant.... Consultant is baffled as to why I have so much damage so quickly I am praying and hoping they figure out why quickly and hopefully be able to turn some of the damage around ... Baffles me even more as my bloods are perfect ... I am dreading that I will have to go through everything all over again but I always knew deep down it may be on the horizon .... Fingers crossed I am going to do everything in my power before any more damage occurs

76 Replies

Hi

So sorry to hear this. May I ask ,what was the reason for your first transplant?

jojokarak
jojokarak in reply to freddie76

The question mark is still there one consultant says my polycystic ovaries and another says alcohol but I think this proves the first one right ... The strange thing is for the last year I have been fighting to see my pcos consultant again and i was just referred back to him 3 weeks ago

Hidden
Hidden

Omg JoJo how's that possible? I'm coming up to 2 years post and although I feel fine, I've got a weird feeling about it. I sincerely hope some of the damage is reversed or at least the progression is stopped for a while. Can't imagine anyone going through a transplant so soon after the first one 😔

jojokarak
jojokarak in reply to Hidden

I know it's driving me crazy .. consultant said yesterday it's definitely my body doing the damage they just got to figure out what it is but as I just said above one of the consultants I seen pre said it was a pre existing condition I have called pcos I just dreading all the tests again but I need answers now x

Sorry to hear this jo. Hope it doesn’t mean a second transplant as there is stuff they can do, believe me xx

Thank you I am keeping everything crossed xx

hi

I really feel for you, I would find it hard as well.

I am sure they will try everything to sort it before another transplant, in the mean time my thoughts are with you.

David

So sorry to here this Jo.I hope something can be done to stop this getting worse and it repairs. Fingers and toes crossed for you. Xx 🤞🤞

OMG Jojo you are not having it easy just now, hope they can figure out what the problem is, thinking of you 💕

jojokarak
jojokarak in reply to Kate50

Thanks Kate me too and quickly x hope you're ok 😘

JoJo this is so shocking and upsetting. We all go through so much pre and post transplant and there is always that dark shadow every day that the new liver could start to fail.

You are a strong cookie, and have been an amazing support to so many others. We are all here for you now. You’ve got this no matter what may come. X

jojokarak
jojokarak in reply to Identity75

Thanks hunni I getting there slowly a few more days when it's sunk in I know I will get my strength back the hard part will just be waiting for what tests and solutions as you know x

Hidden
Hidden in reply to jojokarak

Yes, it's very difficult especially waiting for test results. Xxxx

Well what a p*sser!

Hope a resolution can be found. Sending you my best wishes and crossing my fingers and toes. Struggling to get my shoes on, but still crossing my toes.

jojokarak
jojokarak in reply to Kristian

Thanks my dear 😘 don't you be getting cramp on my behalf xx

Sorry to hear this JoJo! You’ve been through so much already but you are strong enough to deal with this 😘 x

So sorry to hear of your sad news but hang in there! You were very supportive of me and I am hear to support you in whatever way I can. You are in my thoughts and I hope things soon start to improve for you.

Owlie

jojokarak
jojokarak in reply to Owlie

Always here for anyone doesn't matter if I am fighting my own problems XXX and thank you

Hidden
Hidden

Hi

I am really sorry to hear this, JoJo I hope they sort you out quickly. You are in my thoughts and prayers. Love and hugs Lynne xxxx

jojokarak
jojokarak in reply to Hidden

Thanks my darling xx

So so sorry to hear this Jo. I hope and prey it’ll all sort itself out without another tx. One’s enough for anybody. Keep us posted!

jojokarak
jojokarak in reply to Isabelle2

Thanks and I am going to avoid a second with all my might xx

Really sorry to hear this JoJo, sending you my warmest wishes.

jojokarak
jojokarak in reply to Will3

Thank you means a lot x

Very sorry

jojokarak
jojokarak in reply to G1nny

Xxx

So sorry to hear this Jojo. Yours is one of the stories that have been giving me hope on here. I hope they can figure it out for you soon x

jojokarak
jojokarak in reply to Scaredgirl

Thanks for that it's nice to know and I will not fall at any hurdle we can't xx and there is always always hope

Sorry to hear this Jojo. I hope they can turn things around for you because you’ve been through so much already. Give yourself some time to get through getting this news. Sending love x

jojokarak
jojokarak in reply to Smyally

Thanks and I give myself a day but now it's fight time again x

Smyally
Smyally in reply to jojokarak

You go girl. X

Hidden
Hidden in reply to jojokarak

GoJoGoJo

Hidden
Hidden

Love and hugs jojo xx

jojokarak
jojokarak in reply to Hidden

Thanks xx

Hello Jojo.

I am shocked too. I hope it will get better. Hang in there. *HUGS* 🌸xx

jojokarak
jojokarak in reply to Caspiana

Thanks hunni xx

What a terrible shock jojo. I'm hoping that something can be done to help. Take care. Deb 💓🌹

Thank you x

Oh hun, you never do anything by half do you?

Is there even a slight chance it was the scan that screwed up?

I refuse to accept negative things about you and I'm sure there's something they can do.

Straight back in the circles you go.

Sending hugs healing, loving hugs

Rita

Xxx

jojokarak
jojokarak in reply to mrsmerlin

Oh I wish but I seen it with my own eyes .. I am being positive now I have survived worse so I will get this sorted one way or the other xx 😘

Aaaw god!! Take care babes 💗 #fingerscrossed for you mwah xx

jojokarak
jojokarak in reply to Miss_fab

Thank you so much 😘😘

So sorry to here your news

I know how you feel it's what we all dread after going through a transplant.

I have every thing crossed for you

I met a woman last year at Kings she had just had a second transplant and looked incredibly well aged 72.

Best wishes

E

jojokarak
jojokarak in reply to Beture47

Thanks and it is amazing x I hope it can be held off but as we all know nothing is garunteed xx

S**t , S**t , S**t . Oh no JoJo just seen this . Bloody bodies with minds of their own . Will keep my fingers crossed babes . 💕

jojokarak
jojokarak in reply to Bermuda1

Thank you 😘😘

Oh no JoJo, I can't believe this has happened. I have fibroscan readings of 19-25 Kpa and my liver is still compensated (no Tx, too old, Ha Ha), and coping just now. So I hope and pray that they find the cause and put it right, and you don't have to go through another Tx.I will pray for you. Take care, David

jojokarak
jojokarak in reply to davianne

Thanks David x

Do they know what's up with yours ?

davianne
davianne in reply to jojokarak

Hi JoJo, Mine was caused by regular, social, but not heavy drinking for many years. No symptoms of cirrhosis to warn me ( liver probs were not on my radar). Diagnosed after a US scan revealed fatty liver. gave up the drink immediately, but the damage was done. I now have a few symptoms, but thankfully not ascites or varices ( just one miniscule one), just itchiness, oedema and mild HE. My Doc says my liver is compensated so just 6 monthly bloods & US's.

I hope your liver will be compensated, and you won't need another Tx.

Take Care

David

Hidden
Hidden in reply to davianne

How old is too old, please?

davianne
davianne in reply to Hidden

I was told the cut off age was 65-70yrs depending on Tx centre. I'm 71 years young!!!!!

Best to let it go to younger people I guess.

David

Hidden
Hidden in reply to davianne

Hi David

I am 64. When i queried that a decison re t/p was taking sooo long and id soon be too old, they said afe wasnt an issue. Have you queried what youve been told.

But i know NOTHING!

Miles

🇧🇧

davianne
davianne in reply to Hidden

Hi Miles, no I didn't query what I was told. Although my cirrhosis is stage 4, it is compensated currently, and I do all I can to look after it. As I mentioned in my post to JoJo, I do have a few annoying symptoms, but one I didn't mention was constant tiredness and aching joints. I just hope I won't need a Tx.

David

Hidden
Hidden

Jojo - only just seen 🙁

Oh me miserum.

You have always come across, and will continue to come across, as a really strong person and I love reading your forthright posts!

Like others, I’ve have absolutely everything crossed for you.

Miles

jojokarak
jojokarak in reply to Hidden

Thanks so much miles this won't dampen my spirits x

Hidden
Hidden

Hi

How's it going Jojo? You are always in my thoughts and prayers. Sending all my loving hugs to you. Lynne xxxx

jojokarak
jojokarak in reply to Hidden

I ok at moment I have got over the shock I have just been out with my family to celebrate 2 years post x. .. how are you?

Hidden
Hidden in reply to jojokarak

In alot of pain at the moment but I will get over it. Love and hugs Lynne xxxx

Hidden
Hidden in reply to Hidden

I hope you do. Fingers crossed.

Miles

🇧🇧

For once I didn't know what to say. Utterly saddened for you after all you've been through to get this far. Hoping thye can pull things out of the bag for you and even if you have to go through it a second time fingers crossed they can get you fighting fit once more.

All the very best to you JoJo. Try and enjoy your liver versary - you are still here alive and kicking and that's better than the outlook was two years back.

Loads of love, Katie xx

jojokarak
jojokarak in reply to AyrshireK

Thanks Katie I am hoping to be taken in soon and some serious testing and investigation done and hopefully be helped x

Hidden
Hidden

I'm in strong hopes that there is inflammation or swelling causing th stiffness and not cirrhosis. Can it even get cirrhotic in 2 years??

Heart is with you xx

jojokarak
jojokarak in reply to Hidden

I know it's not even 2 years because I had an MRI last year about August so that's why I was totally blown away .. Leeds don't know yet so I am sure as soon as they do they will contact me and have me in for tests ... In the meantime I am cutting all fat and sugar out of my diet and my consultant recommend I take vitamin e as it helps with inflammation and regeneration so for now it's fingers crossed and carry on and just wait x

Beture47
Beture47 in reply to jojokarak

I do believe that grains can cause inflamation I have cut them out completely

IlIt siits me well.. its sort of the paleo diet

Everything crossed for you

E

jojokarak
jojokarak in reply to Beture47

Wow I never heard of that I will do a little research and ask my gastro x

Beture47
Beture47 in reply to jojokarak

I don't think the Gastro will agree with the diet. But check it out

My liver failed in 2 months

First symtoms

26.08.15 tx 26.10.15

Could find no reason

For sub acute liver failure

If I eat grains I get inflamation in my intestine in agony for a week.

I have been tested for celiac disease. All clear

So I stopped all grains and no pain and feel well. I can have a small amount of rice occasionally.

I am sure grains haven't caused your live to behave badly, I suffer from inflamation so this way of eating suits me

Sending you all my best wishes

Beture47
Beture47 in reply to Beture47

Check out David Perlmutter MD

American Website

Its quite interesting

Xx

jojokarak
jojokarak in reply to Beture47

I will and my local gastro quite laid back he advised me to start vitamin e it's great for inflammation and regeneration so we will see 😊

Beture47
Beture47 in reply to jojokarak

I think I should take some myself

Xx

My prayers are with you jojo, be strong

jojokarak
jojokarak in reply to Peppy05

Thank you 😘

It just doesn't seem fair to get a diagnosis like this after going through so much already - I hope they can discover what's going on and get you back on track!

jojokarak
jojokarak in reply to kyia

Thanks and me too x

Prayers and best wishes to you, jojo.

Mary

jojokarak
jojokarak in reply to mncold

Thank you Mary xx

Hi jojo, not been on for bit so only just seen this. What a kick in the tits eh!? ☹It's good that bloods are ok but I hope they get to the bottom of it soon, there must be something underlying surely? Look after yourself love 😘.

Stacie. Xxx

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