Fibroscan Followup.: Hey all I will keep... - British Liver Trust

British Liver Trust

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Fibroscan Followup.

87 Replies

Hey all I will keep this short as we all know I can tend to write mini novels at times. Some had asked me before about what my latest fibroscan score was in December and I had updated that to let everyone know that it had been rescheduled as the hepatologist wanted to keep them now at 6 month checks minimum. I know the interest in this was and is regarding if or not fibroscan scores can change or lower over time. While this is variable for each person and isnt going to be the same for everyone, my ongoing scans continue to answer it as a yes they can indeed go down over time.

The scores are as follows:

March 13th 2018- stopped drinking

May 30th 2018- 58.9 kpa

September 18th 2018- 38 kpa

(Today) March 26th 2019- 17.5 kpa

I know we are not typically supposed to post test results but I hope admin will let this slide as I am merely posting it acdemically as a sort of medical documentation for those who inquired and continue to seek answers to fibroscan related questions within the forum.

-Phoenix

87 Replies
alfredthegreat profile image
alfredthegreat

Well done! What a good overall result in less than a year. Alf

in reply toalfredthegreat

Thank you my brother . Ill admit I almost cried to see the improvement.

alfredthegreat profile image
alfredthegreat in reply to

I bet you did! What wonderful news!

Great news, a reminder of what looking after your liver can achieve. Well done.

Great news!

Warrior1 profile image
Warrior1

Way to go. Just amazing really. It goes to prove that it’s ‘so worth it’ to follow the right path with a bit of faith, hope and determination. Just great news for you !! 😎

in reply toWarrior1

Thank you so much!

jojokarak profile image
jojokarak

I am sooooooo happy for you 😘 and well done my dear 😊

(I hope mine has Happy news in 2 weeks as well ☺️)

in reply tojojokarak

Im rooting for you always Jojo!

jojokarak profile image
jojokarak in reply to

❤️❤️❤️😍😘😘😘

in reply tojojokarak

You got this 💕

Well Phoenix! It's such a shame you live in Canada as I think you deserve a celebration party with 🎂🍰🍦🍢 🍽☕ MUSIC with loads of friends ! !!

Well done my friend! I'm proud of you achieving such a great KPa!

Keep the excellent works up

Trish x

in reply to

Aww thank you Trish xx

Owlie profile image
Owlie

Wow that is fantastic, well done you! Trish we need a virtual party!

in reply toOwlie

And lots of vitual alcohol- free beer

in reply to

Oh and no - no replies please, we don’t want another verbal war ☹️☹️☹️☹️☹️

😁

in reply to

☺ thank you brother.

in reply to

NP, man 😁

in reply toOwlie

Thank you Owlie! Very much appreciated🙂

in reply toOwlie

Your right Owlie, we should have a virtual party to say well done to those who deserve it !!! Now how do we go about that? 🤔🤔🤔🤔 lol

Owlie profile image
Owlie in reply to

I dunno...maybe when I get my free iphone as per another post I can find a way to do it ;)

in reply toOwlie

I like your thinking! I'm useless at IT. However I can work my computer until it has a wobble then I scream !!!!! 😄😄

Keep in touch

Trish

cccd profile image
cccd

Such good news Phoenix!! Well happy for you mate!! You are a legend on here and help so many..... so happy to see it going good for you!!

Callum

in reply tocccd

Thank you so much, Such kind words Callum! You flatter me truly! 🙂🙂

Millie2014 profile image
Millie2014

That's great news Phoenix and very reassuring for others on this forum. Well done to you x

in reply toMillie2014

Thank you Millie! How was your trip?🙂

Millie2014 profile image
Millie2014 in reply to

Hi Phoenix it was fantastic a completely new experience which we all loved. By the way I asked my GPs nurse for the elf test. Looks like I am going to have to fight for it. She totally played down the fatty liver and fibrosis she said it was very common and she had never heard of the elf test. It's so frustrating but I will persevere. Hope you are having a good day.

in reply toMillie2014

Thats great to hear you all enjoyed the trip!

Nothing pains me more than to hear that people are denied simple tests to put their minds at ease regarding their health. Its truly a cruel practice to put people through. The fact that she hasnt heard of an ELF test signifies that she is not up to date at all on whats going on in liver health. Please continue to persevere and push for the test as its your right to have it done. I dont know why we have to ask doctors the way we do. Its should be not for them to decide to give us permission or not. I mean its not like you made this all up, you indeed have a liver issue and wanting to know the depth of it is an incredible show of your ambitions and advocations for your own health. It should be applauded by doctors not brushed off to the side! You reside in the UK Millie correct? I know Richard is quite a great source of help when it comes to getting in contact with the right people. Being outside the UK im not up to snuff on where to go or how over there. Perhaps you could send him messege?

Again keep pushing love, and never stop! ❤

Millie2014 profile image
Millie2014 in reply to

Thank you Phoenix yes I am in the UK. I will keep trying and if I reach a dead end I will definitely send a message to Richard. I am going back to my consultant in a couple of weeks and I will raise the question again with him. I will keep going thank you for the encouragement.

X

in reply toMillie2014

Always a pleasure , anytime!

GrandmaDylan profile image
GrandmaDylan

Wow Phoenix that's wonderful news, really pleased for you. Deb

in reply toGrandmaDylan

Thank you so much Grandma D xx

Mywildlove profile image
Mywildlove

That’s so awesome!! May you have an even lower score next time!!

in reply toMywildlove

Thank you love xx

Very good to hear you're continuing to improve.

What ever you're doing, keep on doing it.

in reply to

I was so worried It was going to be higher than last time. Thank you so much 🙂🙂

Ajo13 profile image
Ajo13

YAYYYY! SO HAPPY FOR YOU, FRIEND. 🎉❤️

in reply toAjo13

Thank you sweetheart ❤

Smyally profile image
Smyally

Really happy for you Phoenix. I haven’t a clue what your results mean as I don’t think I’ve had a fibroscan , judging by everyone’s reply’s it is obviously fantastic. Keep up the clean living and enjoy life to the max. You are so helpful to so many people on here including myself so just to Thanks xx

in reply toSmyally

Thank you so much! Anything Ive done to help you im so happy to have done. I thank you for all your posts and advice on the forum as well. You have a great way with words and such a calming effect to your delivery xx

kuda123 profile image
kuda123

Great improvement Phoenix..Every one is interested how you managed to did it .Please guide us ..Hoping that one day you will get normal liver reading..praying for you

in reply tokuda123

Thank you brother. Anything I learn along the way I try to always make sure I share with all of you great people. So far all ive done is just eaten as best as I can and stayed off alcohol. I cant say im responsible for much more than that other than trying to not become to sedentary. Which is difficult for us all on any day its true but I really believe even a brief walk can not only help the body but really can lift the spirit and break the mental spiral. Being amongst nature on a mild spring day seems to fight back the depression winter brings to all especially to us here as we all have to much worry to consider all the time. We must try and not forget to do as many of the things we love as much as possible. For some that maybe gardening. Like AJo and mywildlove i know they love cooking. For myself and Alf it can be a walk around a good guitar shop. Whatever it is for you Kuda dont let this disease take that from you. Keep your mental in good health amd tour spirits up can do impeccable things for your physical health. Talk soon my friend 🙂

Great News, really hope all the goods news keeps on coming

in reply to

Thank you and I do hope so for all here as well! I hope you are well and still taking life by the horns David!🙂

davianne profile image
davianne

Phoenix, that's great news, and well worth the wrath of the moderators😁

I was told by my Hep guy yesterday that it would not improve, when I saw the only Fibroscan m/c in the hospital trust, in his room, and asked if it was for me. So all the hassle of parking for just a chat 😢.

David

in reply todavianne

Oh how we constantly prove these doctors wrong my brother. My hepatologist is very optomistic about regression possibilities and speaks very in depth about new ways of thinking in the hepatology world. She thinks it will be some time before doctors are " up to date " in their minds about what is now possible compared to the past.

That being said, though she was confident that my score would come down over time she was reluctant to do the fibroscan yesterday. When i asked her to do it she smiled at me and said "Phoenix lets wait a bit longer, i dont want you to be disappointed that it hasnt changed much as it will take a long time",

I replied to say " na lets do it anyways" , "humor me" i said.

And to her suprise the result clearly changed quite substantially as we see. She just looked to the ceiling with a smile and said congrats. She said "keep up what your doing and see you in six months". Lol

I adore her truly. Especially that she could express happiness for me instead of frustration that I was right. But goes to show they are but human and can err like anyone else. Which will always be in our favours!

Thank you so much for the reply David. Dont let them tell you that things cant change. Wspecislly when they jabe nothing but personal opi iom behind it. Next time kindly reply with "prove it doc!" 🙂

Hidden

We are really delighted that your results have improved. However..... please do keep in mind the community guidelines for all members about posting test results.

Thank you and have a great day

Trust1

in reply to

Not to worry Trust, I dont intend to make habit of it. I just thought it might bring some hope and answers to many who had inquired.

I promise to play by the rules🙂

in reply to

:)

in reply to

Absolutely. It brings inspiration and hope !! On your next 6 month scan private message your score. ☝️😃

in reply to

Thank you Nidia! I believe you still owe me a PM first my dear 🙂lol

in reply to

🤣🤣👍

Poobear69 profile image
Poobear69

Well done fella, really pleased and genuinely happy for you!

in reply toPoobear69

Thank you so much my friend. Good to see you back as well!🙂

Radnor profile image
Radnor

Your results should give others hope, that clean living does work and you thoroughly deserve to be congratulated.You go abve and beyond explaining so many complex conditions in plain language. So happy for you Hazelx

in reply toRadnor

Thank you Hazel. Your such an awesome person day in and day out! XX

FuzzyWasShe profile image
FuzzyWasShe

Wow, congratulations, Phoenix! That's such fantastic news! I'm proud of you, man. 😀❤️

in reply toFuzzyWasShe

Thank you!❤

canadaliz profile image
canadaliz

That's fabulous news! I started back in August and was a 29.4 and last week had a scan and am 9.8. Healing can and does happen when married to clean living. I'm in Canada too (Toronto) where are you? Wonder if we are sitting in the same waiting rooms and not knowing! Stay on your track, it is obviously the path of healing and great living.

Smiles, Liz

in reply tocanadaliz

Thats awesome Liz, We are on the mend it seems! One more Canadian here that makes 4 of us that I know of now You, me, Mywildlove, and Boone.

I do certainly wonder if we have been in the same waiting rooms as well lol, I am just outside Toronto in Ajax but, my hepatologist is in the UHN Liver Clinic at Toronto Western. Where abouts in Toronto are you?

canadaliz profile image
canadaliz in reply to

I'm at Royal York and Bloor West in Etobicoke. My gastro is at St. Joe's and my liver team is at TGH. I have been so happy with my care. A sick liver sucks but we are fighting back! Liz

in reply tocanadaliz

Im glad your gettimg well talen care of Liz! We should get a coffee when we are next downtown!

Mywildlove profile image
Mywildlove in reply tocanadaliz

Hey Liz! You don’t have to answer this if it makes you uncomfortable. Is your gastro at St. Joe’s in Hamilton by chance?

davianne profile image
davianne

Hi Phoenix, I see the management have reprimanded you. How many Hail Mary's did they punish you with, or are you back in the Hair Shirt 🤣

David

in reply todavianne

Lol they were quite kind about it. I guess the reminder was to let me know im not " above the law" haha. I dont make habit of posting results but I see so many questions about fibroscans and if they can improve that it seemed selfish not to share this with everyone. My hair shirt has been at the cleaners for quite sometime. They keep calling me to pick it up but I somehow keep forgetting to do so ☺☺

(Love the reference, been a while since Ive heard someone use the term hair shirt!)

FuzzyWasShe profile image
FuzzyWasShe in reply to

Ha! I just had to look that term up after reading your comments. And all this time I thought Barenaked Ladies was just being weird for using that as a lyric!

Rose2000 profile image
Rose2000

Hi phoenix, Amazing! I’m so glad to hear your good news. It’s really wonderful news.

Sorry if I spoil your happy time. Regarding this matter I have a question if you don’t mind me to ask you( maybe I shouldn’t ask you any question in this post). Your fibroscan score came down so much because you stop drinking alcohol, but about my case I don’t drink alcohol at all and never did but my fibroscan score in 2 years ago was around 21.ka but in my recent fibroscan test which was done in February was 50 ka. Do you know or have you heard in this case (non alcoholic case), is it possible the fibroscan scores come down and gets better. I apologise in advance if I ask you in wrong time in wrong place)

Many thanks, Rose

in reply toRose2000

Not a problem to ask at all. Ill send tou a PM shortly Rose! I just have to pick my daughter up at school🙂🙂

Rose2000 profile image
Rose2000 in reply to

Thanks Phoenix. Very nice of you.

Great job man keep it up I'm happy to hear your doing great

Truly

Boone

in reply to

Thank you Boone!

VeeWat profile image
VeeWat

Wow, wonderful!

in reply toVeeWat

🙂

Supportinghubby profile image
Supportinghubby

Amazing - that's great news. It's looking like my husband won't get a fibroscan - going to ask about the ELF test but I'm not hopeful. It must be comforting to see your score coming down (although it can obviously go the other way so maybe hubby is best not knowing!). Long may it continue.

Re posting your results - I think it's comforting to see that its possible to make these improvements. It's totally different to posting results & asking people to comment on them/make diagnosis (in my humble opinion!).

in reply toSupportinghubby

Thank you so much! Are they denying the request for the scan? Thats not right of them to do to him.. He has the right.. its not for them to decide, You fight them on that love!

Thank you for your opinion on my posting the results. 🙂 Your thoughts were exactly my sentiments. Much agreed, It would be different if it were posted asking for people opinions or a diagnosis on them.

How have you and your husband been doing?

That is absolutely outstanding ❤️👏👏👏. Life is Good 🎉. Congratulations on no drinking !! It’s only going to get better and better🙌🙌. Woohoo!!!🎶🎊🎉

in reply to

Porphyriamaniac profile image
Porphyriamaniac

That's fantastic phoenix, well done! 😁😁👌👌👌xxxx

in reply toPorphyriamaniac

Thank you ❤

Hi Phoenix,

Congratulations!

I did see that the admins had a reply - but I do think they occasionally miss that some on this site are not using results to get medical advice, but as a means to inform others of us that some things are possible and to keep hope. So thanks.

My husband's doctor does not use fibroscan - or at least not in hubby's case, so we don't have that experience. We do however have experience with improving bloods far beyond the one year mark, granted only a bit at a time but improvement non the less.

Again, congrats and best wishes,

Mary

in reply to

Thank you so much Mary. You are right about the difference of posting results seeking diagnosis and interpretation and posting them to give hopes to others. Im glad you see it that was as well.

I am so glad that his bloods are still continuing to improve. That gives such hope to us all as well! A bit at a time is always something to look forward to. Id prefer it over a bigger improvememt at once and then a stall personnaly. It was always the slow and steady that won the race. 🙂

Best wishes to you Mary and your husband always XX

Millie09 profile image
Millie09

Hi Phoenix, just came across your post .fantastic!my fibro scan was 28kpa in Jan 2017 , was down to 14 kpa in Nov last year. I bet your well chuffed 😊😉.may it continue. 🤗

in reply toMillie09

Thats awesome millie! 🙂

Millie09 profile image
Millie09 in reply to

Thank you Phoenix 😊

in reply toMillie09

Youve been with this for so long and youve always been such an inspiring story of how it can turn around. Everytime somone gets a new diagnosis and is scared that its going to be their doom I am reminded of you and how you are a such a strong example of how thats not true and that there damn well is a life after cirrhosis. Keep being you. Your story keeps me up when I am down 🙂 Thank you!

Millie09 profile image
Millie09 in reply to

Oh wow , such lovely kind words Phoenix, I wont say it was easy to start with , even now I have reminders that cirrhisis Is still there but a bit of positivity and help.you can achieve anything.

My very best wishes to you Phoenix. Have a wonderful weekend 😊❤

Warrior1 profile image
Warrior1

Late seeing this. Fantastic news and so good to see someone who has advised/helped so many get news like that !!

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