Home › Forums › Main Forum › Patient Stories › New to Forum › Patient Zero
- This topic has 13 replies, 10 voices, and was last updated 8 years, 9 months ago by
Nevil.
-
AuthorPosts
-
18 September 2015 at 4:55 am #1330
HI Nevil
For you, many thanks:
The fair breeze blew, the white foam flew,
The furrow followed free:
You were the first that ever burst
Into that silent sea.An extract and variattion on Samuel Taylor Coleridge’s Rime of the Ancient Mariner
14 June 2016 at 1:04 am #19014For all the guests and new members, wanted to bring TTT the post from a pioneer almost
9 months ago. It is a “success” post with a prophetic message in the second half of paragraph
5.Hopefully, the powers to be and to be had, including the pharmaceuticals, can someday have the
mindset of Dr Salk. Unlikely, but stranger things have happened.Nevil, you only have one post, so hopefully you will be SVR forever and Emilio,
we know you are currently getting there. We thank you both for having the
courage so that others can follow in your footsteps.click here https://fixhepc.com/forum/redemption/475-redemption-3-is-open.html
contracted Gen 1a in the 70’s, dx in 2007…ast 27 to 35…alt 43 to 96…vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16…. lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later………….lab results 3/9/16 ast 21, alt 21, vl UND
56 days later………….lab results 4/6/16 ast 20, alt 22, vl UND
139 days later………..lab results 6/29/16 ast 28, alt 30, vl UND…EOT
SVR2414 June 2016 at 1:35 am #19015re_roll wrote:For all the guests and new members, wanted to bring TTT the post from a pioneer almost
9 months ago. It is a “success” post with a prophetic message in the second half of paragraph
5.Hopefully, the powers to be and to be had, including the pharmaceuticals, can someday have the
mindset of Dr Salk. Unlikely, but stranger things have happened.Nevil, you only have one post, so hopefully you will be SVR forever and Emilio,
we know you are currently getting there. We thank you both for having the
courage so that others can follow in your footsteps.click here https://fixhepc.com/forum/redemption/475-redemption-3-is-open.html
Beautiful post Nevil
SVR 24
14 June 2016 at 3:13 am #19017And for the record Nevil is now past SVR24
YMMV
14 June 2016 at 3:46 am #19020Ty for bumping up this post
I followed Emilio here asap after Dec 1 knockback
Thanks Em
Thanks Neville
Rawk
SVR 8 and on way to 12 yew!
Ariel who is also saying treat NOW14 June 2016 at 4:16 am #19021Wow such a great story Patient Zero. It gave me much joy to read about you.
Cheers to you, Dr Freeman and SVR24!
Blood transfusion in 1992 – Diagnosed in 2007
Tx naive -G1b – F1
VL 2.270.000
ALT 40
Start tx June 4th/2016 with DAAs – Sof/Led from India
Bloods on two weeks of tx (June 18th)
AST 17 – ALT 10 – GGT 19
Virus UND
Bloods on six weeks of tx (July 16th)
AST 17 – ALT 8 – GGT 12
Virus UND
EOT on August 8th (did 9 weeks and 3 days)SVR 4 Virus UND (September 7th)
AST 13 – ALT 5SVR 14 Virus UND (November 12th)
14 June 2016 at 5:02 am #19023Onya Nevil! by not bowing down and accepting the status quo you have helped 1000’s of others
big heartfelt thank you from me.
SVR 24
14 June 2016 at 5:20 am #19024What a heartfelt post Nevil. So glad you found James Freeman and this forum. Sounds like you also are cured.
The wonderful people on this forum are by far some of the most knowledgeable, bravest, nicest, funniest people I have had the pleasure of knowing and although I am now cured I hope to be able to stay in touch into the future.
Cheers Lynne
YMMV
14 June 2016 at 7:15 am #19031Thanks re-roll for reminding us of this post.
Thanks Nevil for being such an intelligent, courageous and encouraging trailblazer. Great to see your SVR result via Dr James.
Those of us who have followed in your footsteps are thankful to those who made those first steps.14 June 2016 at 2:47 pm #19043Thanks for reposting this re-roll!
Nevil is a legend and we should all give thanks. For the record I was svr 12 about 4 weeks ago after doing 18 weeks of sof/dac. I guess i will eventually do another test svr24 but the thinking now is that svr 12 is cured?
In August 2015 when I was organising my meds through Mesochem and James, daclatasvir was a ‘real world’ unknown, however, the only true NS5A pangenotypic on the planet. Most if not all people were seeking ledipasvir however based on the small Ally 2 trial and a gut feeling I chose to do the sof/dac combo. Turns out that it’s a pretty decent combo thankfully.
I owe my life to Greg (who i met first), Dr Freeman, Nevil and the enigmatic Rachel from Mesochem. However I could not have done this without the support of all my friends here at fixhepc, I love you guys. Em
14 June 2016 at 5:48 pm #19050And I owe SVR 12 status to all the above, including you Emilio!
I had never read “Patient Zero’s” post until today!
m
Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtxG 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 2416 June 2016 at 2:05 am #19154Back in November 2015, when I visited Tasmania, Andrew told me that FixHepC had treated about 350 people.
Since the web site now shows some 1761 members, it would be interesting to know just how many people have now been fixed by FixHepC?
Patient 351.
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).25 July 2016 at 4:34 am #21360I’d like to thank you all for your kind words.
I don’t really think all that much about Hep C anymore. How quickly a life threatening situation transmutes into just something else that happened to me. I suppose it also has to do with how insidious this disease is. You can have it for 30 years without it really bothering you. Even when the chronic fatigue sets in, you tell yourself that you’ll probably last another 30 years, just because the first 30 were easy.
This isn’t really the case! I’ve lost 2 friends who had Hep C who didn’t make it. Both of them thought time was on their side. I tried very hard to impart some sense of urgency about receiving treatment, yet for some inexplicable reason, they just couldn’t or didn’t want to, take the step. So they died.
The trouble is, once you start getting sick, you end up in a negative spiral. Soon you don’t have energy enough to remain active, then you find your diet suffering and then the effects start to compound. The Hep C may be gone, but that doesn’t mean that everything reverts back to normal (whatever that is) once you have cleared the disease, but compared to one year ago, the quality of my life has improved enormously. The improvement wasn’t instantaneous though. whilst in my weakened state, I had contracted Ross River virus and then Rickettsia, both of which knocked me around a bit. I suspect that I would not have contracted these diseases so easily if my overall condition had been better, the point being that it’s not only the Hep C that can cause you distress. I suppose I’m lucky that it wasn’t some form of cancer, which often attacks Hep C sufferers.
People have thanked me for helping pave the way so that others could follow. While I am quite proud of my role in all of this, I have to point out that I did it for myself. It was what you might term, an act of self love. I’ve had plenty of time to ponder this and it strikes me that paradoxically, I’ve had far more success helping others when I put myself first, than I’ve had trying to help others through selfless acts. I’ve often lamented that, when trying to help others ‘the road to hell is paved with good intentions’. Maybe some of you know what I’m talking about.
The message I’m trying to impart, is that if you have Hep C, do something about it now! Whatever excuse you have for not putting yourself first is delusional. My hope is that some of the procrastinators will heed my message. Good luck! -
AuthorPosts
- You must be logged in to reply to this topic.