Hope - Something I thought. “Not for me”

[Dolly1001]

Where to begin? Firstly,, it’s a long, long time since I last posted. What wasn’t common knowledge-

My Liver had been given an F3 Fibroscan Score (A strong F3 the Hepatologists told me) and a kPa score in double digits. This was September 2021.

I tried very hard to find information on how to help myself, but everywhere I searched came back with F3 = irreversible damage. I couldn’t find the meanings of my kPa number anywhere, just that mine were not good.

It sent me into a downhill spiral. A very, very bad spiral. Anyway, long story short, thanks to help and encouragement of one person. I plugged along, eventually stopping all alcohol, totally and completely, wondering the whole time “why bother, I’m already beyond help”. But on I went anyway.

Last week, Friday, I had a follow up appointment & the same person who did the initial Fibroscan, did another - to follow any deterioration or otherwise.

The results are in! I had really hoped that I had not deteriorated far, that my efforts were not totally in vain!

As of today my scores are F0!!!!!!!!!!!!!! In big black letters the words read NO FIBROSIS!!!!!

The kPa is now down in single digits! Low ones, the region reported as being slightly high but not at deaths door.

Cried with relief when I read it, am still staring at it!

So there IS hope! I worried when he frowned, looked at my old scans and went to same places. Did checks twice!!

If there is a chance, take it! It won’t come my way twice, so am sticking to my water 💦 complete with cordial, which I drink from a wine glass! ( cause that’s what I own). I hope it encourages others struggling.

[Tia2021]

That's fantastic news, well done 👍👏 x

[Dolly1001 in reply to Tia2021]

thank you! That was quick! I was sitting here reflecting on my journey! Having finally committed the truth to ‘paper’ as it were.

Gone is the swollen abdomen, the Ascites leaking from my legs. Gone is the puffy face, the huge bags under eyes. The sallow. Skin. The chronic infections, plumbing problems - no longer skip to the loo. Gone are the tremors 100%.

A huge difference - I was quite scared that my efforts were in vain..

[Louby1954 in reply to Dolly1001]

🙏❤️😁 excellent news and thanks for sharing have a great Thursday 🙏 ❤️😁 I am a self confessed technophobe 😂😂 why I don't have the patience or time to post 😂 taken me 3 hours to post this 😂❤️🙏😁

[Dolly1001 in reply to Louby1954]

Sorry didn’t get chance to reply properly.

1. Many thanks for making the effort to reply.

2. I hope this helps folk to try and reduce/halt any Liver issues they may have.

Our Liver is every bit as important as the Heart, Lungs and Brain. It is the workhouse of the body. It runs best on good food and clean water, it’s taken time and circumstances to get me to appreciate this, but it certainly helps.

[Aztec632]

Well done you. Onwards and upwards. So happy for you

[Dolly1001 in reply to Aztec632]

Thank you

[redpoint72]

Well done you......so pleased for you.....Can also remember myself ,writing it down.....to read what a state id become......tremendous amount of pain and upset.

And from then on,how to get myself out of it!!!

One or two really good folk along the way.....that did believe in me.

Best foot forward.

I wish you well.

My best. Chris

[Dolly1001 in reply to redpoint72]

Thank you

[Corin1950]

What great news. Well done you.

An inspiration to others struggling with the demon drink.

[55spenc]

I'm also hoping Dolly. I have my first 6 month scan on the 08/03/2023 and also hoping for a change in my original Fibroscan score. 23.6 = F4 definitely no going back (apparently), No alcohol for what will be 6 months and 10 days, eating like a professional athlete, losing a lot weight (as of now) weigh in at 80kg, I was 104kg, turned fat to muscle, and more importantly NOT A SINGLE SYMPTOM of Cirrhosis as when first diagnosed. No Ascites, no nothing but still abstained as told. Not a single ounce of support from my hospital/GP. 10 weeks after a devastating diagnosis I got to speak with my GP. YES 10 Weeks!! by then I didn't/don't need support and that is something that I will always be proud of. I found the real ME, I work a minimum 6 days a week (my choice as it takes my mind of what should have been) it only took 55 years😜. Jokes apart, new methods of diagnosis are required because I am convinced my diagnosis was unjustified, apart from the way it was delivered to me (i.e.) your worst nightmare has come true, you can never drink again, there is your diagnosis, there is the door, now .... off and get on with it. I'm hoping for a full explanation this time around. Its only U/S can I request another Fibroscan?

[Dolly1001 in reply to 55spenc]

Hi there, everything crossed! It is harsh, incredibly harsh when going it alone. I had one Doctor, just one who smiled, added vitamins etc to my medication regime while in hospital, never spoke just smiled and helped out where he could, he prescribed enough for me to bring home also. But others? Hell no! I never knew who he was but he at least gave me a fighting chance.

You should be aiming for no further damage, that was my goal, damage control and it’s turned out better than I could have ever hoped for.

So fingers crossed for you! We “Baby boomers” are rewriting the medical books! A few years ago, type 2 diabetes was incurable, now we do it daily! Sepsis was 100% fatal, we now have got that down slowly, to between 60-65%, not flash but better than 100%, kidney failure? Onset of death - no more! The list is endless.

Ultimately much of this is within our control, so if we can, let’s do it!

Praying for you! Keep us posted!🌹,

[55spenc in reply to Dolly1001]

many thanks

[Dolly1001 in reply to 55spenc]

it’s the staying stopped that will make the difference!

[10864]

I’m sooo happy for you as I right this - and I had the exact same experience tho they diagnosed f4 fibrosis into possible cirhosis - they weren’t sure due to enlargement of liver and deranged bloods. I was drinking VERY heavily. That was 27th April 2021.

January 2022 - complete abstinence since 27/4/21 and F0!

God wiling and with my eternal gratitude to the AA fellowship, I’ll be two years sober in 9x weeks, happy and heathy again at 43, being a good mum again to my children and a good and reliable member of society- all I ever wanted during some very dark times.

Thank you for reminding me why I keep strong - I wish you all the happiness this has brought - always remember this day if you feel like “just one won’t hurt”..

Have a wonderful day

Xx

[55spenc in reply to 10864]

Hi

Now there is another thing, I had a course echotexture but the liver was normal size?? Bloods were all within range?? Bearing in mind this was nearly 6 months ago! So hoping they are better than within normal range!! I’ve learnt F4 that is it no going back. So on that basis I hope you’re extremely proud of yourself as you should be! Great to hear success

[Mango5cm]

hi Dolly - well done for being so strong and determined and not giving up - except for giving up the alcohol ! You’ve given hope to many of us - my son gave up alcohol as soon as he was diagnosed in October 21 he still has ascities and itchy skin - your post has reaffirmed that life is worth fighting for - thank you and very best wishes for your new life xx

[Dolly1001 in reply to Mango5cm]

Hi there, it was the quest for a cure to the itchy skin that originally got me to this site. Sadly I just had to put up with it for ages! Felt like forever! Took many, many months. I must admit I lost sight of my goal on more than one occasion. Got a bad dose of the “who cares I’m dying anyway” thing ( lots of self pity for my self inflicted condition 😂) but eventually plugged on.

He WILL win! But it will take time and he has your love and support! Always a plus! 🙏🌹

[Mango5cm in reply to Dolly1001]

thanks dolly for your reply / it means a lot to me . He went through that don’t care phase as well - kept saying I won’t be here for my birthday in June but he’s more positive now . Sending you a big virtual hug . Carol x

[AnxiousPete]

What fantastic news. So pleased for you and thank you for sharing some good inspirational news.

[Dolly1001 in reply to AnxiousPete]

Thank you - never stop trying!

[Greengal314]

Fantastic job Dolly and congratulations! I keep trying and sometimes wonder if it is all in vain as well. Thanks for the encouragement! 😁

[Dolly1001 in reply to Greengal314]

it can’t be in vain, I wondered also, but it’s always possible to at least halt deteriorating and that was my aim. All the rest is unexpected bonus, a gift if you like 🌹

[Greengal314 in reply to Dolly1001]

I’d say that is quite an extraordinary gift, and I am so very happy for you. My vitamin d hydroxyl 25 is and has been good, and my blood levels went back to normal quickly. I’m hopeful that abstinence and a focused healthy diet (in addition to a lot of exercise) can slightly heal or at least stop ✋ any further damage. As of now I have no symptoms and everyone says I look younger than ever. I want to knock on wood that this is is a good sign.

I don’t want to be unrealistically hopeful though. My doctor is rather curt and crass and I sometimes question if she has actually read any of my tests. I feel that she repeats a spiel.

[Dolly1001 in reply to Greengal314]

yes indeed! Knowing what I know - it IS a gift from above! To be treated with respect! Looking at how others have fared, I understand the man’s consternation and why he repeated the scan.

I’m in no hurry to abuse this gift I’ve been given. I doubt it will happen twice.

Like you, I was aiming for holding my own, no further deterioration. So to have healing (I would bet the scars are seriously reduced) is total bonus.

Praying for you 🌹

[Greengal314 in reply to Dolly1001]

thank you so much ! ❤️

[mozlaw]

what were your scores mine is 13.4 and i have given up for 9 month

[Dolly1001 in reply to mozlaw]

mine went from F3 and from 10.3 then up to 18.5.

Now? F0 4.6 KPa so it can happen! All the best!

[mozlaw in reply to Dolly1001]

thank you well done

[Foxdud]

brilliant news and well deserved I’ll raise a glass ( of water) for you tonight 😊

[Dolly1001 in reply to Foxdud]

Cheers! Yes, these days I “Clink” with good old water in my glass!

[Linakes]

The symptoms you had before shows full blown cirrhosis, its irreversible. After reading many posts in this forume I am convinced fibroscan constantly underestimates fibrosis. Bunch of people with signs of serious liver disease or even confirmed cirrhosis get very low kpa. Its totally unreliable tool

[Dolly1001 in reply to Linakes]

in earlier times I would 100% agree with you. But I was aiming for a stop on deterioration, knowing what I know about Physiology & other relevant things.

For example I’m well aware that scar tissue DOES NOT VANISH! That just doesn’t happen. Bridging however can, rarely, but it can reduce to insignificance- this is down to a number of factors exclusive to the individual.

However, as the initial Fibroscan was done in conjunction with the incredibly thorough MRI, I’m a very happy camper.

I’m also well aware that we are not all given a “Bounce Back Body” and these second chances are rare! With this in mind, I’m incredibly careful about what I eat and drink-drink in particular. I wish you well.

[Linakes in reply to Dolly1001]

I am just so sceptical after reading many cases where people had symptoms of sever liver disease, some even diagnosed cirrhosis but still had normal or just a bit higher then normal kpa scores. Maybe in your case its right, but I think fibroscan is so unreliable, so I dont get how it gained so much trust when its wrong so often

[Dolly1001 in reply to Linakes]

ordinarily I would agree - but there was an MRI scan involved also for me. Also a long consult with Hepatologist looking at me pitifully when I was given the original news and my shock, insisting that there must be a way.

I think, I would fall into the category of those who, if they go back to the bottle, deterioration will be swift, very very swift and unforgiving.

With death following fast!

Many of us have heard of folk who kicked the drink, got healthy, then decided to regress back into the bottle and died. That is the group I’m sure I would fall into - I’ve got a second chance! I’m gonna “Work it”♥️🌹

[Linakes in reply to Dolly1001]

Hope its true, it must be such a relief!

[Dolly1001]

Thanks! I knew I couldn’t be alone! Fantastic to be in this place now! Guess your one of the few who knew just how I felt when reading the written report.

Now have one from Hepatology saying they don’t need to see me as progress “in a particular direction “ has occurred. Luv it!

But of course, it’s not the signal for a booze filled party, that cannot happen anymore, not missing all those wonderful (sic) hangover effects or the alcohol poisoning effects. Now comes the job of living well! Sounds like you also walk that path, thank you. Again, I’m not alone.🌹

[Chick_atee]

That is great to hear. Well done.

Wishing you the very best.

[Dolly1001]

fantastic! You have been given a gift! Hold on to it!

[jazzjam]

I am happy that everything is starting to go well for you. The one thing in your post that really struck me was,

“! I was sitting here reflecting on my journey! Having finally committed the truth to ‘paper’ as it were.Gone is the swollen abdomen, the Ascites leaking from my legs. Gone is the puffy face, the huge bags under eyes. The sallow. Skin. The chronic infections, plumbing problems - no longer skip to the loo. Gone are the tremors 100%.”

I am so pleased how great you feel. I remember this feeling, how good my skin was, my face looked fresh. i am 5 and a half years now since I was diagnosed with cirrhosis and stopped drinking alcohol. My good bit of liver is still going strong due to eating and drinking clean. I wish you all the very best 🌻

[MrsWorried]

Well done! So lovely to hear a positive story and full credit to you for sticking with it. Sadly too late for some but not you! Huge congratulations!! X