Home Forums Main Forum Patient Stories ‘In which LG seeks Redemption & makes new friends’

Viewing 15 posts - 316 through 330 (of 523 total)
  • Author
    Posts
  • #12997
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    I heard that Gaj, Hmm is it scary? I veguely remember someone saying they took their music and headphones in there once ?

    I also get a fibroscan, same day


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #12998
    Avatar photodointime
    • Guardian Angel
    • ★★★★★
    @dointime

    Hmm is it scary?

    Not unless you’re claustrophobic.
    I’ve never had one myself and hope to never need one – I am claustrophobic. They’d have to have me valiumed out to get me into one.
    dt

    #12999
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Not scary, I found it mostly boring and the noise a bit irritating. If they allow music and headphones it would be a good way to spend the time. Have to remember that if I have another one. :)

    edit: yeah, it is a bit small. Just tell them if that worries you, I’m sure they’ll understand and have a plan for those situations.


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

    #13003
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    MRI is very noisy definitely take earplugs or headphones
    Fortunately it’s not for epilepsy! Then it’s your head in there.
    You’ll be right babe, it’s exactly as Gaj described I have accompanied my kid to plenty she just chugs along for her brain one alone these days
    It’s slightly claustrophobic but she goes in head first dunno about the liver maybe you’ll get lucky and your head will stick out the top end
    Anyway yep its loud
    No not scary at all

    #13034
    Avatar photodointime
    • Guardian Angel
    • ★★★★★
    @dointime

    LG – I pm’d you.
    dt

    #13038
    Avatar photodointime
    • Guardian Angel
    • ★★★★★
    @dointime

    LG – see my post here:
    http://fixhepc.com/forum/viral-load-results/765-quantitative-pcrs-with-lloq-missing-uk.html

    Medichecks uses The Doctor’s lab. I haven’t had time to follow up as thoroughly as I want to on this issue.
    dt

    #13421
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Yeah I’ve lost count how many MRIs I’ve had for different things :P

    Including one for suspected epilepsy – so you’re right in there lol. The machines used to be a lot more cramped once upon a time; I remember my nose almost touching the ceiling of it, that was a bit claustrophobic! Seem to have improved the design in more recent years. No sweat LG, you’ll be fine – and given earplugs too :)


    GT1a since 1988, diagnosed 1990
    F0, tx naive
    VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
    Started Mesochem sof/dac 12 weeks 01/01/2016
    11/02/2016 – 6 weeks UNDETECTED
    AST 26
    ALT 26

    #13436
    Avatar photoDebs
    • Guardian Angel
    • ★★★★★
    @debs

    Hi LG,
    How did it go? #love #duck #flower

    #13445
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Thanks Zhuk, Yep, you were right, MRI was easy and kinda cool ! The Doc there said it was the “Rolls Royce of MRI machines with the Luis Hamilton of operators scanning me” .

    Debs, it was a pretty amazing experience. This new technology is pretty awesome, so glad I did this. It was part of ongoing trials for this new diagnostic for liver disease. I will post more about it in the week as I just got home and am pretty tired, but amazingly the (top) Doc said my liver is in pretty good shape considering . I saw a full colour scan of my liver (spleen and other stuff too!) – Never knew how far round to the left the liver went and how big it is! Getting my report in writing next week and will post more, but at this point in time, my liver is looking pretty healthy for someone with HepC. Just need to kill of those little ******* virus left.

    LMS reading of 1.5 (range between 1-4 anything over 2 pretty concerning) and get this….. Also had a fibroscan to compare which has gone down to a frankly mind blowing <6 !!! I actually can't remember the actual figure, I was so stunned, but it's either 5.2 or 5.6 !!! All I can think is, healthy diet, no booze etc but my instinct is the meds helping liver function has caused this.

    Pretty emotional really after the cirrhosis scare - Got a bit teary talking to the lovely Doc .

    I need VL to go down to UND now for things to be much more hopeful - let's see what happens hey.

    Big #love to all .

    (edit) Fibroscan machine showed an 'accuracy of reading graphic" (something else I learned) - It was pretty accurate :)


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #13446
    Avatar photoDebs
    • Guardian Angel
    • ★★★★★
    @debs

    :lol:
    Glad to hear it was so good! You must have been pretty apprehensive wondering what the state of your liver might be.
    How lovely and reassuring for you and also all that top tech and expertise focused on you!
    Well done and good luck with your imminent VL results, hope you get an UND!
    Deb X #love #duck #flower

    #13447
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    I learnt a few things. Interestingly, where I have recently feeling discomfort, liver area, is where I have the least fibrosis (right side associated with liver) – In fact, the fibrosis I have, is more on the left side of my liver.

    All rather mind-blowing one way or another and I feel grateful and honoured to be part of this research. I really hope this goes on to help many more patients with non- invasive liver disease diagnostics in the future. – These people are doing awesome work :+1: and we are (according to the Doc) “20 years behind other conditions / diseases (such as heart disease eg) in diagnostics, treatments etc “Well, I told him the patient perspective, but I’m sure he knows that ;-)


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #13478
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Hi LG
    Good news to read of your liver health
    A relief to have the question mark blotted indeed
    I’m sure you’ll get UND soon it can just happen right at EOT and sometimes even just after remember, and we are the first guinea pigs to do this tx globally there is limited data compared with old tx regimes. What we do see is that clearance in general has a fantastic prognosis over 90% and if the annoying happens re-treating or extending are easy because we have access to the meds here thanks to this club.
    Nonetheless I am crossing my flippers and fins your bloods come back UND next tests now we are in our third trimester as I call it haha!
    Now you have had an MRI you see it’s not scary just noisy huh, we have lovely new whiz bang machines here too in Neurology but they still make a hell of a din. Did you just have your lower body in not head? I can’t imagine why they would put your head in for no reason with all that magnetic stuff. When my youngest was young I used to sit at the end of the tube while she had her epilepsy ones and a little mirror enabled her to see me though her head was held in position by a device. I wore headphones supplied by the hospital to block out the noises. Those were long MRIs that was over ten years ago now.
    When will you have a blood result? Any updates?
    Again, great news about your liver health
    :+1: #flower
    Love from Ariel

    #13479
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Hey Ariel :) I had to go in head first, but there was a gap at the end so not so bad. I had large headphones on and the technician was talking to me throughout “breathe in, breathe out, stop breathing” in a sing-song kind of voice – Quite meditative in a way once I got used to it! She said my liver was nearer to my head so I needed to go in head first (yes I did ask !) Didn’t find it that noisy, really, they must have been good headphones ! It reminded me of those crazy sounds you get in-between rides at the fair-ground (worked that out afterwards) so maybe some subconcious happy childhood memories :P .The MultiLiverScan new diagnostic was awesome stuff. Yes, pleased about results, I was 8.7 (from a good good reading) in December 14, so at least something’s improved hey ? ;)

    Yes, next test results – Trying not to think about it, got to wait on results. Can see me extending either way, but with what and for how long is a decision to be made soon. And yes, thanks to MonkMed / Fix HepC not the NHS which would probably have offered me 8 weeks only, can’t imagine the stress of that. Looks like the Abbvie treatments with Riba are going to be popular with our health service, I see Scotland (who are way ahead of England re treatment) have that as their 1st option now and a few patients have been offered in England now too.

    Thanks for your good wishes, Ariel #flower #love Keep well as can be.


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #13484
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    It reminded me of those crazy sounds you get in-between rides at the fair-ground

    Haha yes, I’ll have to remember that description. :lol:

    Glad to hear you got pleasant news regarding lack of cirrhosis and improved fibrosis levels too! You helped advance the science at the same time so another bonus. :+1: Am sure you’ll get excellent advice about next steps whichever way you go. :)


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

    #13486
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Cheers Gaj :+1: :)


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

Viewing 15 posts - 316 through 330 (of 523 total)
  • You must be logged in to reply to this topic.