Activism - FixHepC

This topic has 48 replies, 13 voices, and was last updated 7 years, 3 months ago by rohcvfighter.

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2 July 2016 at 11:02 am #20314
Ariel
- Topics: 3
- Replies: 1,060
- Total: 1,063
- Guardian Angel
@ariel
Good luck cheese I hope all goes smoothly for your travels
That combi Matt did you nick it from my local beach? illy:' />
Wishing you well Cheese
Ariel
2 July 2016 at 11:28 am #20315
klhilde
- Topics: 30
- Replies: 223
- Total: 253
- Guardian Angel
@klhilde
Two things to consider before making unnecessary waves.

First, there is no place on the customs form that specifically asks about these types of medicines … and if you have the electronic chip and use the machine there are even fewer questions. To announce you’ve got Hep C meds would be going beyond any requirements of the forms.

Second, if you make too much noise at customs those easy pass forms might be changed … and there are still a couple million people that may need to do this.

Just have the meds in your carry-on along with paperwork and don’t even concern yourself more with it.
2 July 2016 at 7:36 pm #20330
Matt-Kenney-google
- Topics: 1
- Replies: 423
- Total: 424
- Guardian Angel
@matt-kenney-google
My lips are sealed Ariel and I’ve sworn cheese to secrecy.

GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”
4 July 2016 at 4:26 am #20428
cheese
- Topics: 2
- Replies: 54
- Total: 56
- Recovery Champion
@cheese
Point taken Kihilde.
At this time I will be happy to make it through customs in Boston without assistance.
I had come out of severe fatigue last week and was full of P+V, but this past weekend am back there, Just able to saunter around and feeling not too well. Not looking forward to the 20+ hours flight from Bangkok to Boston, but will be happy to get there. Just took my 28th pill and going for bloodwork today as I do not have a doctor in the US and I do not think I can just stroll into a lab to request blood work like I can here in the sticks of Northern Thailand.

One thought I had to help spread the word, (albeit with less fanfare but more focus) is to attend AA and NA meetings as I did many times when I was living in the US. It’s a perfect support environment to speak at, no judgement, no conflict, and the folks attending are all there to help/support each other. Also I do not think there would be any issues with providing doc Freemans published work for reading as you suggested. Very much appreciate your wisdom and kind words. Best Cheese

GT 1a
VL 4.9M
F0-1
Since Late 60’s
Meds Cipla SOF/LED
Start June 7, 2016
4 July 2016 at 5:23 am #20429
beaches
- Topics: 10
- Replies: 750
- Total: 760
- Guardian Angel
@beaches
Salut, Monsieur le Camembert
I’d be very interested to hear how you are received at AA and NA meetings, please keep us posted.

Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
4 July 2016 at 5:41 am #20430
cheese
- Topics: 2
- Replies: 54
- Total: 56
- Recovery Champion
@cheese
Beaches your salute put that first smile on my face today.

I am an addict and will forever be, acceptance at AA and NA should be a given, (I hope/am sure) unless things have changed drastically in the past 15 years. Hep C is just part of my addiction story of recovery, sobriety, and redemption. I will be dropping off for a few days Wed-Fri but will be back when I get settled back in the US.

GT 1a
VL 4.9M
F0-1
Since Late 60’s
Meds Cipla SOF/LED
Start June 7, 2016
5 July 2016 at 3:03 pm #20514
klhilde
- Topics: 30
- Replies: 223
- Total: 253
- Guardian Angel
@klhilde
Hey Cheese, I don’t know if you’ve used the PM tool here yet, but the button is top-right under the tabs menu. I just sent you a PM.
6 July 2016 at 4:11 am #20535
cheese
- Topics: 2
- Replies: 54
- Total: 56
- Recovery Champion
@cheese
Boarding my flight from BKK-HK-BOS in four hours and I leave with a bit of good news after my 4th week blood draw. All liver LFT’s have come back to normal range. Yippee Have to wait about ten days for the viral load results. You folks have kept me up when I was really down and thank you all. Will be back online when I settle in Boston after the horrible 20+ hour flight. I have my herbal tea and honey and also my fantastic Yeti travel mug. best cheese

GT 1a
VL 4.9M
F0-1
Since Late 60’s
Meds Cipla SOF/LED
Start June 7, 2016
6 July 2016 at 4:47 am #20537
Greedfighter
- Topics: 28
- Replies: 582
- Total: 610
- Guardian Angel
@greedfighter
Hi Cheese,

As one former addict to another, I will tell you what I think. If you were an addict, you know how to keep a secret and keep quiet about things.

So now keep quiet not only for yourself, but the people you hope to inspire to follow in your footsteps.

You have to have a story to tell, how you were able to walk through customs with these meds. So others can feel confident in having them shipped. How these generic drugs cured you and are easily available. Your cure will help many to move on this opportunity.
6 July 2016 at 7:50 am #20548
cheese
- Topics: 2
- Replies: 54
- Total: 56
- Recovery Champion
@cheese
Got it. GF

I do know how to live under the radar as a highly functioning addict.

My lips are sealed but not for long.

I don’t care about anonymity any more.

Hell I may even open a Facebook account.

GT 1a
VL 4.9M
F0-1
Since Late 60’s
Meds Cipla SOF/LED
Start June 7, 2016
6 July 2016 at 8:20 am #20550
GT2
- Topics: 1
- Replies: 293
- Total: 294
- Guardian Angel
@gt2
No, but seriously …don’t go down the narcissistic facebook path Cheese … you’ll end up with exaggerated feelings of self-importance, and excessive need for admiration & affirmation, develop a lack of empathy for others, become addicted to posting multiple selfies daily , and develop the need to document what you eat for breakfast, lunch and dinner … on the other hand, at least we’d get to see what type of cheese you are & all of your ingredients … e.g. Barvarian Bergkase, Blue Vein, Brie, Canadian Cheddar, Cracker Barrel, Tasty or mild, Semi-matured, Vintage …

1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Na√Øve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂
6 July 2016 at 8:39 am #20552
beaches
- Topics: 10
- Replies: 750
- Total: 760
- Guardian Angel
@beaches
What about his gym workout?

Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
6 July 2016 at 9:11 am #20553
cheese
- Topics: 2
- Replies: 54
- Total: 56
- Recovery Champion
@cheese
LOL
No worries GT2
Would you believe I spent most of my working career in IT, building corporate internetworks. The more I knew what they knew, the more reclusive I became with anything on the net. No Facebook, no hi five, linked in NOT, Twitter what is that. No I think Facebook is not for me. I like to shake hands and look people in the eyes. When I Bought my Meds on the streets of Bangkok in an arranged meeting via Greg J’s help I was sceptical until about five minutes into the conversation with a gentlemen by the name of Mr. G. I knew what he was about and the Meds he held were the real deal. The face to face meet with Mr. G made the leap of faith a lot less scary. Cheers
Cheese

GT 1a
VL 4.9M
F0-1
Since Late 60’s
Meds Cipla SOF/LED
Start June 7, 2016
6 July 2016 at 9:11 am #20556
GT2
- Topics: 1
- Replies: 293
- Total: 294
- Guardian Angel
@gt2
illy:' /> illy:' /> illy:' />

1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Na√Øve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂
11 July 2016 at 3:24 pm #20809
cheese
- Topics: 2
- Replies: 54
- Total: 56
- Recovery Champion
@cheese
Have been back in the US / Boston for 6 days now and adjusting to 11 hour time zone change and all that. I have a 24 hour alarm set as my meds are now in the evening instead of the morning. Gotta love coffee, it lights my fire in the morning, and yes I saw The Doors / Jim Morrison live in the old Boston Garden way way back in the day.

Anyway sent my first feeler to a progressive health columnist that writes for the Boston Globe offering to bare my soul, medical records, and share my story of hep c and generic meds. Not sure what I am getting into if anything but have made the first leap and hope the chute opens.

GT 1a
VL 4.9M
F0-1
Since Late 60’s
Meds Cipla SOF/LED
Start June 7, 2016
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