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.
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 !! 😎
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.
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?
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.
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
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
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
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
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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!🙂
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 😢.
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
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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🙂
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Absolutely. It brings inspiration and hope !! On your next 6 month scan private message your score. ☝️😃
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Thank you Nidia! I believe you still owe me a PM first my dear 🙂lol
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
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.
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?
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
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!)
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!
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)
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!).
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!!!🎶🎊🎉
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.
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
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. 🤗
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!
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 😊❤
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