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TOPIC: You are a hero

You are a hero 3 years 2 months ago #22119

  • DrJames
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If you have treated with generics you are, in my opinion, a hero. You have shown others the path.....

m.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11541772

In the face of enormous peril what would you do? It's a favourite pub conversation, but thankfully not something many of us have to face.

Scientists have long puzzled over what drives some people to become selfless rescuers while others freeze.

We are raised to think twice before we act, especially when faced with a potentially life-threatening situation.

Friends and loved ones tell us "not to be a hero" and police usually advise us not to confront dangerous people. Yet some are compelled to act.

A study in the United States into why some individuals take extreme risks to save others reveals these types of rescuers tend to disregard all that advice.

If you stop to think whether to act when the danger confronts you, you probably won't, the report - by Yale University scholar David Rand and Zev G. Epstein of Pomona College, California - suggests.

In an interview with the Washington Post, Rand describes this "danger of deliberation".

He says it is the biggest deterrent to what he calls "extreme altruism".

"The people who act are the people who have a sort of co-operative impulse and are people who don't overthink things," Rand says.

"It is the kind of thing that if you stop and think about it you start coming up with reasons you shouldn't act."
YMMV
Last Edit: 3 years 2 months ago by DrJames.
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You are a hero 3 years 2 months ago #22130

  • rohcvfighter
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I am not 100% convinced whether in the case of HCV, getting treated with generics or spreading the news about generic drugs may be called heroism. I believe a different word should be used, but I do not know which one would be the right one.

What I felt before having decided to proceed with the generic drugs, was that the "system" (the healthcare system, legal system, Big Pharma, etc) was taking away my FREEDOM to be free of HCV. And that I could not accept.

Today I see those who are talking about HCV generic drugs are like the men from the book of Viktor Frankl - see the paragraph from below.

“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.”
― Viktor E. Frankl, "Man's Search for Meaning"


In the context of HCV people have the FREEDOM TO CHOSE THEIR OWN WAY. They just need to be aware of this freedom.
Such thoughts make me think that TOMORROW things will be different. And better!

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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You are a hero 3 years 1 month ago #22207

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James, we all owe you a great debt you put yourself and your reputation on the line ensuring
myself and thousands of others are now Hep C free I don't know we'd all be here without you.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
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You are a hero 3 years 1 month ago #22219

  • LondonGirl
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You said it Sirch, that's the truth that :+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
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You are a hero 3 years 1 month ago #22226

  • Ariel
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I'm not a hero
I'm just a person and a parent who got a shit illness somehow

Grateful yes hero no
thats way too fancy a tag or badge for me a hero
Truly just thankful that's all
At least it wasn't that other stuff again
Survival of that was possibly a miracle if these labels are to be applied


Take care all and thanks to the real hero: that's the Doc who set this up and released me and you and all from the illness :+1:
A
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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You are a hero 3 years 1 month ago #22229

  • DrJames
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Hi Ariel,

Considering your dreadful past experience with PEG/Riba going back for seconds takes some guts.
YMMV
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You are a hero 3 years 1 month ago #22230

  • rohcvfighter
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It might be all are right :). It depends from the perspective we look at these words.

(Wikipedia says) Moral courage is the ability to act rightly in the face of popular opposition, shame, scandal, discouragement, or personal loss.
(Wikipedia says) A hero .... is a person or main character of a literary work who, in the face of danger, combats adversity through impressive feats of ingenuity, bravery or strength, often sacrificing his or her own personal concerns for some greater good.

To me, whenever I think at those who helped me get treated with generics (Dr. F,, Greg, my RO doctor, you guys from here who took the risk to freely talk about hep C and generic drugs) I see them as heroes, my heroes. When I think at me however, I do not see myself with this "hero" label, rather I see myself as a person who (finally) had some courage and decided to took life into own hands and get treated despite the opposition or my perceived of opposition related generic drugs.

Trying to think from a doctor's perspective ( I am not, but for this exercise I will pretend I am :whistle: ), seeing a patient getting through the IFN+RIB treatment or deciding to take control on the own life and be a signal for the others patients, might be seen also as an heroic behavior.

No matter if we regard this as heroism or courage, IT DOES SAVE LIVES AND BRINGS THE SO MUCH NEEDED HEALTH !

Hats off !!!!
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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You are a hero 3 years 1 month ago #22236

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Thank you Doctor J for sharing those sentiments at the outset of this post, but I think most of us feel you have it a bit backwards as to who the heroes are here, You, your father, Mr. Jeffries, and the team at monkmed and I'm sure countless others we'll never know, working behind the scenes, are the ones who fit that bill. IMHO.
Words can never quite convey all that's in our hearts .... But thank you never the less, my hero,

Matt
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"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
Last Edit: 3 years 1 month ago by Matt-Kenney-google.
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You are a hero 3 years 1 month ago #22238

  • beaches
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Totally agree with what people are saying here. If anyone's a hero it's the good doctor
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
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You are a hero 3 years 1 month ago #22364

  • Ariel
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Ty Doc for the props
Yep that was a bungee jump into the abyss that old tx you are correct in my personal case
BUT
I'M WITH THE VIBE HERE
THANKS TO THE FHC TEAM
We are free!!

This ones for you and I sing this old fave with a new outlook now THANKYOU :+1:

Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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You are a hero 3 years 1 month ago #22377

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Hero hmm now you put it like that :+1:

I dunno Doc I think were just sick of being sick :sick:

cheers
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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You are a hero 3 years 1 month ago #22380

All of the above :) :+1:
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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You are a hero 3 years 1 month ago #22407

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My sentiments lie with everyone else who has answered your comment Doc!!! :) You are so unique and what you have undertaken to do has allowed us all to help ourselves get well through one combination or another. For many, feeling ill from this virus for years and often decades was all too obviously devastating and for some we did not even realize just how bad we felt until we started to feel oh so much better. Looking back I cannot believe how I simply accepted what was happening and waited and waited! This is what happens all too often in all kinds of situations. People end up so apathetic to what is going on, feeling helpless to do anything. You have shown us all that if you really believe in something and have the ability to change things then you find a way. Without you and as someone else has said, those who work with and alongside you none of this would be a reality! My thanks and admiration are added to everyone elses on here!
You are our hero!!
all my lovexxxxxx #love
Nadia
by the way how do you add songs to these posts I am so bloody useless when it comes to working things out takes me ages of messing about and wasting so much time I give up pathetic I know!!!! :blush: :blush:
Diagnosed Hep C genotype 1b early 1990's. Treated 1998 peg Interferon/Riba non responder :-(( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016. :-))
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!
Last Edit: 3 years 1 month ago by nads.
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You are a hero 3 years 1 month ago #22409

  • rohcvfighter
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Hello Nadia,

great thoughts, thank you.

It made me think on some maths:
- I was one of the patients being sick more than 13 years (perhaps 20 or 30, but I am not sure).
- currently, in my country, only 1.5% of the HCV patients have the tiny chance to get treated next year (about 10 000 out of 600 000) via the NHS.
- I was one of the others 98.5% who did not qualified for the treatment (you may also say I was outside the system).
- One day, a stranger, an Australian (Greg Jefferys) made a trip to India, got treated with generics and ... shared his story. In only one year his story inspired others ( thousands I would say), me included.
- One other day, a doc founded FIXHEPC, a place from where many people (tens of thousands I guess) already got useful information and thousands of them got treated. For sure other tens of thousands will follow soon. Perhaps next year we will be talking about millions ? :woohoo:
- Each of the thousands who got already cured or are currently under treatment let the people around them know about the generic drugs (one tells perhaps to other 10 people, 20, 30.....about the generics). Try to multiply these numbers to see where you get :+1: ....

Maybe for someone who never got sick with this disease or another difficult one, the numbers from above are simply numbers.
But when you've been through this ugly disease and got cured, you cannot stop thinking how meaningful it was what those (few) before you did and how it will change in good the life of others (many) in the future.....Words cannot properly describe how this feels, but gratitude is one of it.

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
Last Edit: 3 years 1 month ago by rohcvfighter.
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You are a hero 3 years 1 month ago #22410

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Hi RHF,
the maths as you say blows me away it is phenomenal and word of mouth so works in this situation. Coming here for info the first time was truely helpful and well that Australian you talk of wow an inspiration right?!!!! The second time I came was after the Redemption trials had already started I couldn't believe it had all been put together in a way that made it really accessible to all. Just the thought that you could do something yourself with a little help from your friends and not be dependent on if your name and number came up or not was a good feeling gave one some self esteem and massive hope for the future.

Ok yes monies comes into it but you just know that somehow you have got to do it, the amount is a small price to pay for ones health and well being. I don't want to sound flippant it is still a lot for those with little, I know from personal experience as do others!!!. There were people also very dubious about the whole thing, having experienced rip off merchants or simply wary of anything that seems outside the norm. Personally speaking, I have spent much of my life on the edge of what is perceived the norm so once I read the forum and all the incredible people on here telling their stories and spoken to a few people at GP2U and FHC it was as clear as anything that this was the place to come and get well. No-one sits in judgement. There is a blanket of support around people from others who know how it feels and those who have the awareness to understand how important it is to treat the terrible virus before it does its worst!

I will certainly do whatever I can to spread the message to others. The NHS hospital I have attended the past 20+ years has slowly begun to treat patients who are not so desperately close to end of life situations but there is still a tight quota I believe and in the meantime there are still many totally unaware they even have this monster in their bodies. My understanding is the numbers are enormous but one never hears much about it certainly not in the media here in the UK. I remember many years ago a TV programme I think the title was 'Bad Blood' what a shit title!!!! No wonder people hid it away from those around them. Whew apologies for the soapbox. I will jump off it now!

Word of mouth is definitely the way to go when possible and I will make every effort to open mine at every opportunity :) :)
love and hugs
Nadia xx
Diagnosed Hep C genotype 1b early 1990's. Treated 1998 peg Interferon/Riba non responder :-(( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016. :-))
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!
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