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Mom I am infected with HCV 6 years 3 months ago #18681

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Not sure how to share this but I will give it a try.

I have gotten so much support and help here since discovering I have HCV. I have nothing but respect and admiration for all of you that put yourselves out there. I have lived a good life save for 5-8 rough years early on with injectible drugs. I am now in my third week of treatment and going for blood tests end of week four. I have shared my story with my wife (current) and divorced wife (great friend) and three children. (two grown in the US and one 12 year old here in Thailand) Special mention to my daughter who was instrimental with her dogged pursuit that I get blood work. She is a fourth year med student in the US and without her I would still be in the dark. Only a few of my close friends know about this mostly because of the shame I have carried all my life about those early drug injecting years. I was and to a lesser degree nqw am ashamed to get blood drawn because of the difficulty they have finding a good vein. Seeing the courage displayed here I finally decided to tell my mom and whoever else that I am infected with HCV. I know its a long read, but it just feels good to come out from the shadows of shame.
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016

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Last edit: by cheese. Reason: incomplete

Mom I am infected with HCV 6 years 3 months ago #18693

Dear cheese,
You did yourself proud today. It took courage to get treatment from Fixhepc, let's face it, it's a leap of faith, to put this kind of trust in total strangers. Yes, it IS a lot of money for most all of us here to come up with, but more importantly, we're trusting our very lives to the people at Fixhepc. Trusting that they know what they're doing. Trusting that they'll get us what we're paying them for and that their support is real and will be ongoing ... as you are experiencing, like the rest of us, it's ALL true.
Just as it took courage to do that, it has taken courage to trust your family. I'm certain you will find that, though somewhat embarrassing to you, your trust in them is not misplaced either. :+1:
I had much the same experience as you describe here and I must say the support from family and friends, including the surrogate ones on this site :) has been extraordinary, trust me on that. ;)
MK
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!
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Last edit: by Matt-Kenney-google.

Mom I am infected with HCV 6 years 3 months ago #18723

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Hi Matt
Thanks for your kind words. I love the people on this site and thank god I found Greg J who showed me the way.
Cheers
Dennis
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Mom I am infected with HCV 6 years 3 months ago #18728

Would you feel ashamed if you got diabetes, heart disease or cancer?

Hep C is just another illness. They all keep me from being unemployed :lol:

P.
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Mom I am infected with HCV 6 years 3 months ago #18732

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Hi price, while it shouldn't be necessary to keep secrets in a fair world it is the public stigma and negativity associated with hepatitis C that causes cheese and many others here to hide their illness, sometimes to avoid ostracism themselves but often to protect their loved ones from others prejudices.

edit: perhaps be more mindful of your audience?
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:
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Last edit: by Gaj.

Mom I am infected with HCV 6 years 3 months ago #18734

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Hi Price

You may think that the stigma of having HCV is funny, or non-existent, but if you had HCV and had experienced the stigma, you wouldn't be laughing so hard. I suggest that you read some of the numerous personal stories of prejudice experienced by us HCV sufferers, shared on this forum, to gain some empathy.

Your comments surprise me to say the least, especially coming from someone said to be employed in the medical profession.

A disappointed GT2 :(
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 Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected :cheer: :) , FBG 11.9 :huh:
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) :)
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Mom I am infected with HCV 6 years 3 months ago #18735

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I have to agree with Gaj.
When I was first diagnosed I was pretty open about it but very quickly encountered more prejudice and ignorance than I cared to put up with and decided I was not going to disclose it at work and was very careful about who I told generally. It's illegal to discriminate based on HCV or HIV status in the workplace in Australia but it's easy to not employ or promote someone if you don't want to by making it look like there's another reason. I just didn't give them the opportunity
One notable exception - when I decided to get my surf bronze and get into surf lifesaving 9 years ago I told them and they were OK with it seeing as they provide excellent training around contamination prevention. Very sensible. Gotta love the surf lifesaving movement!
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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Mom I am infected with HCV 6 years 3 months ago #18738

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Hi Price

To answer your questions. No No and No.

But read this small encounter I just had and maybe you will understand.

Just an hour ago I ran into a friend at the grocery store that I had not seen for awhile. In the fist few minutes of chatting and catching up, I told him what was going on with my health and I was infected with HCV. The first words out of his mouth was. HOW DID YOU GET THAT. Now think about it. Do you think he would have responded the same if I told him I had diabetes, heart disease or cancer.

Cheers
Cheese
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Mom I am infected with HCV 6 years 3 months ago #18739

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My understaning about Price's post is that nobody with HCV should feel ashamed, as HCV is a disease like any other one, however the HCV does provide an "indirect" discrimination. It is a sad reality many are facing. I doubt Price's intention was to be funny, rather to pinpoint this stigma reality.

One of the explanation I have (mostly for.myself) about why people keep HCV secret is that apart from the issue related to the disease there is also the issue of the other's acceptance, which turn into feeling rejected, discriminated, etc. It will take sometime until others will become aware that HCV can be treated and will consider HCV no longer as a scarry ghost, rather as a disease like any other. Greg Jefferys's blog from the 26th of June is giving in my view more explanations about this.

Best Regards,
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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Last edit: by rohcvfighter.

Mom I am infected with HCV 6 years 3 months ago #18741

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Specific things are associated with HCV and HIV infection

Drug user
Homosexuality

Yes in a perfect world who gives a damn how you got it but we are not there yet and In some places in the world people are punished severly for either one like a criminal.

I guess the point of my thread was/is that To this day I still feel shame for the drug injecting and am uncomfortable having the blood work because of the difficulty they have to hit a vein. I am in Thailand and can only imagine what the lab attendant is thinking as they try and try. Phuut Thai Mai Dai I cannot speak Thai to explain to them that its ok its not your fault. :) It's me :P

This illness has opened a dark place in my past and I am determined to make it a positive by shining a bright light on it. Cheers I welcome the support and comments from all. Price I had taken no offense to what you posted. It was very logical.
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Mom I am infected with HCV 6 years 3 months ago #18746

cheese wrote: I love the people on this site and thank god I found Greg J who showed me the way.
Cheers
Dennis

I post this in response to your last post cheese/Dennis, quoting something you said earlier.
After reading your post, it made me think about what you wrote above and what I and most others on this site like about it. We speak our minds and hearts here ... true, sometimes we speak before we think and as Gaj has so eloquently pointed out before, proceed to hit the "submit" button, but as you and rohcvfighter point out, we eventually, do reach an understanding of what the intent is behind our words. THAT, is why I too love the people on this site.

Thanks to ALL who share their hearts and minds here #love :+1:
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!
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Last edit: by Matt-Kenney-google.

Mom I am infected with HCV 6 years 3 months ago #18750

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Like RHF, I read Price as just normalising the virus. That is how I see it, and live it etc, but I know I am lucky in my situation and the stigma does upset me- for other people. I do see how it affects people and particularly affects all our health care. I have inadvertently offended people with my own experience of it, but it is mine- I don't feel like apologising for how it is for me, (and I am happy to apologise for almost anything most of the time!) after all these years of fronting it, but I know like everything I just happen to be on a certain spot on a spectrum about stigma. We all have our own stories and they don't have to be the same. I do think it can be educative- what stigma do we unconsciously apply to others, for whatever reason?
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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Mom I am infected with HCV 6 years 3 months ago #18760

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I agree that normalising the virus in the eyes of the public is important and understand that the medical profession uses tough minded cynicism amongst themselves to help them cope with what can be emotionally stressful jobs.

The thing about stigma is that it is not just what you think about the disease.....it is about how others perceive it and as a result view and treat you and how their behaviour makes you feel. If you and your loved ones are strong and resilient and don't care too much about what other people think and you live somewhere that has and abides by antidiscrimination laws then you may be able to participate in life and your community in a reasonably normal manner. But I also fully understand and support those who choose not to expose themselves and their loved ones to the risks that the stigma presents.

I made the decision to start telling most people my story last November. Of interest, four of the people I told then disclosed they either have, had or are close to someone with HCV. These are all people I have known well, some closely, for many years which shows just how pervasive the stigma is. I can also vouch for Cheese's comment about "HOW DID YOU GET THAT" this being my experience with about 90% of the people I have told. Another thing that came to light was that due to my closeness to the issue I assumed others had similar knowledge to me but I became aware of the appalling lack of knowledge that most people have of this disease, its symptoms, transmission and prognosis. No wonder there is much fear out there, the stigma prevents people talking about the issue and the resulting ignorance drives the stigma.

There were a number of reasons I decided to reveal my status to others, as well as the personal ones and spreading the word about generic DAAs as an available and affordable means of ridding the world of this pandemic, I feel now that for me it is important to help in some small way to educate people and hopefully lift the veils that stigma has created about HCV.
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:
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Last edit: by Gaj. Reason: Grammar

Mom I am infected with HCV 6 years 3 months ago #18761

It's a personal decision really as we are unique in that our situations differ from on another. I told Mom whilst my wife was being treated as she was so affected by the Riba I had to offer some explanation for her apparent serious ill health. My mother was ok about it as I have been clean for many years and I have assured her I will recover at some point.

I am careful about who else I tell though as I know quite a few people who will struggle with it, I won't as I have pretty thick skin. My wife doesnt tell her friends as some of them will be horrified. My close friends know and anyone else is on a need to know basis. I have only had 1 health professional have a go at me and that was a dentist, he's now dead so I guess he's not a problem any more.

My advice is if your not comfortable telling someone or IF it may cause them some harm don't. I don't get to ease my conscience at the expense of someone elses well being.

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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Mom I am infected with HCV 6 years 3 months ago #18773

Great post Cheese. Plenty of us can relate. I sure can. And nobody round here gives a damn how a person got it. :)
Cheers
3a for 35 years
Dx 1996, tx naive, ALT 46 AST 38 VL 140K
Started Sof/Dac 1/23/16
Kingswood generics AUS
2/19/16 4wk lab HCV Undetected ALT 14 AST 19
EOT 6/1/2016
TX was 18 wks (w/some 1/2 doses & 1 skip dose after 11 wks
while waiting for +6 wks to arrive)
SVR4 6/30/16
SVR12
SVR24 Redeemed
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