Home › Forums › Main Forum › Patient Stories › ‘In which LG seeks Redemption & makes new friends’
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18 May 2016 at 12:49 pm #17403
Thank-you Paul, Yes, it is a bit of a – trying not to think about it too much, I can only do my ‘bestist’ …
I’ve been thinking of you, hope you’re doing ok?
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 HepC18 May 2016 at 12:58 pm #17404Unreal
Namaste
DelightedAwesome for you LG
CheersBest wishes to you Paul also thinking of you X
gt 1a VL 6m
F2/3 FibroScan – 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc7 June 2016 at 12:54 am #18543Hey LG!
I haven’t been a lot on the forum, shame on me…but occupied with dance-performances and all..
I still feel tired from time to time…my body adjusting to the new situation of other foods, I gained 4 kilos and feel rather fat right now, if you know what I am trying to say…LOLI’m extremely happy with your results, cause you had to wait and be patient so much at the beginning of treatment, you had to go through so much, and endure all this shit…
Anyways, Love to you, my love from the UK…
Keep well, you’re so gonna make it!7 June 2016 at 1:28 am #18547Life Thank-you
but occupied with dance-performances and all..
…. now that’s a girl with my own heart
The strangest thing happened today. Yes, I did endure alot of shit and it seemed endless. Today however, as strange but good surprise – I now have a hospital again, I can’t go into details on here, but I have some NHS support once more. (I didn’t post, but I lost my hospital support at the end of first 12 weeks Sofo/Led which I found odd and distressing, (haven’t posted about it all, as there is just so much).
Anyway, another oddity and I wasn’t expecting it at all. I had an offer of a fibroscan out of the blue. I asked the operator to take one from nearer the center as I had seen my liver via the LiverMultiScan and I felt there was more fibrosis in patches in the center rib-cage / left lobe area and an area I have been having problems with. They did the scan from the right at the side as usual and then asked me did I want a scan nearer to the center, of course, I said yes please ! The reading I got was in line with my thinking and the LIF reading from the brill folk at Perspectrum Diagnostics but lower still 4.7 from the side reading (!) and 5.7 more towards the center (not right in the center mind, mid right lobe. I reckon that could be higher in patches in the center and to the left). I am not sure why they all seem to take readings from the right side these days having seen just how big the liver is? Still, a good reading hey and it seems that so much of my instincts and self-diagnosis’ seem to end up as ‘barking up the right tree’ !
The good news is, I have some support now for EOT and at 12 weeks post – There have been a few very good people I believe helped this situation along, if they read this forum I say a BIG thank-you to you.
Anyway, I have a few more weeks to go, must say I am nervous about coming off the meds, but at the same time looking forward to coming off the meds, it’s a strange combination isn’t it.
Anyway Life, I have wandered off the subject of you – big to you, keep on dancing and stay in touch here and there in between
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 HepC7 June 2016 at 1:42 am #18548Hi there LG
that’s not so much wandering off topic but providing awesome news! F0 they call those numbers in this country I know, I had 5.6 and they call it F0.
You are fortunate that you get a description of the procedure I haven’t had that happen eg lobes etc. I just get the cold wand pushed into my side and that’s it no talkies
You must be almost done with your marathon
You’ve championed this for the UK with your blogging and faith
Only the best for you now bring on your EOT (is it next week?) and future SVRs
Congrats on those fine liver Kpa’s
I want another now after reading this! Doubt that I will get offered one being so okay going in but I would like just to see if there’s a change
Awesome my dear, awesome7 June 2016 at 2:06 am #18550Thank-you dear Ariel
and yes,. I have come down from 8.7 t0 5.7 / 4.7 depending on which spot – on treatment – indeed awesome !I should say, re the description of lobes etc , that was from an independent scan (remember the psychedelic pants scan?!) not from your run of the mill fibro. I have had a very iffy fibro taken by an ‘operator’ and two good scans taken by specialist nurses (one over 2 years ago and one just recently) and the totally awesome scan taken by the rather fantastic Dr Banerjee of Perspectrum Diagnostics. This was an independent trial I was lucky enough to be invited on and not your run of the mill norm on NHS at all. I really hope that scan does become more and more available to more patients it is so much more informative and patients can see things with their own eyes.
How are you doing? Hope you’re still managing to get a surf in ?
Bigps I still have a few weeks to go before the long wait. You must be nearing the end of yours? xx
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 HepC7 June 2016 at 2:19 am #18553Ty hun
Yes a couple of weeks to that last bloods
Ariel8 June 2016 at 2:31 pm #18685Hi LG,
So glad you are on track with your hospital support once more Did you still have your lovely GP? I guess the GP practice were getting a bit nervous about their budget with all those extra VL tests with the extended treatment?
You have had one heck of a journey and some substandard treatment by the NHS.
One for the big blue book? Not long now till EOT.
Lots of
Deb X8 June 2016 at 6:57 pm #18690Hey Debs, Was thinking about you today, will email later.
I still have my lovely GP on board. I don’t want to say too much, but I briefly lost hospital support and was ‘cast to the wind’ but now I have support again, thankfully
This is good news, as supportive as my GP is, I can’t get all the tests they give you at the hospital, so now I have those in place for EOT and post tx thanks to those that need thanks I am very relieved about this !
Not that long left on tx now, you must be coming up for some more tests soon? Thinking of you
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 HepC9 June 2016 at 12:56 am #18711LG I am truly missing your disco input do you have any songs to spin babe?
We need some UK vibes
Ariel x9 June 2016 at 1:52 pm #18752
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 HepC10 June 2016 at 3:10 pm #18821Hi LG, as regards the blood tests will be getting my SVR 15 test mid July and the reason for the weird date is that I want to see the specialist nurse who agreed to monitor me. Without her I would have been also “cast to the wind” as you put it LG. And I would have been quite frightened with the BP issues I experienced whilst on tx doing something disapproved of by the NHS ( plus the expense of all those private blood tests) She is a bit of a generic rebel herself ” we have a moral duty of care to you.” And it’s good to know more people have gone down this path now at my hospital. Got to think of an appropriate gift for when I see her, wine in a hep clinic, not sure, chocs, she watches her weight, flowers a bit showy, not sure yet.
Anyways good to hear you are in fine fettle, as is everyone at the moment!
Lots of love to one and all,
Debs10 June 2016 at 10:15 pm #18846Hey Debs, A long wait, but hey, we’ve done sooo much waiting already and your nurse sounds like a total gem and it will be good to talk to her in person.
I totally hear you re little gifts, so much against us initially and then these kind helping hands along the sometimes rocky way to help us over the bumps in the road, it restores the faith. I have a few good souls to thank too.
Still on the road here, but not for too much longer, hopefully .
Big
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 HepC4 July 2016 at 12:55 pm #20440Just got VL test back from 24 weeks, still UND – Thank God
So that’s 8-10 weeks of UND, 7 more days to EOT, then the anxious wait. Feeling a bit tired, having some nightmares at night and a little grumpy, but otherwise much more like my old self Hospital appointment Friday, I think they see me as ‘interesting’ . Will get full blood work result then.
Thanks again to those you helped me to get NHS support, if you’re reading, you know who you are.
2 all
LG
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 HepC4 July 2016 at 1:46 pm #20442Still UND and EOT just around the corner – that will be a nice relief for you LG.
SVR 24
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