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Author Topic: Why do so many people have this?  (Read 13708 times)

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Offline patsy

  • Member
  • Posts: 27
Why do so many people have this?
« on: July 17, 2014, 12:05:44 pm »
If the blood of an infected person has to make contact with the blood of an uninfected person to get this, how has it happened to so many people recently? I don't know how I got this. I have some guesses, only guesses. Most of the guesses are kind of far fetched. One about 44 years ago (one IV drug experimentation when I was 19). Two that seem unlikely (tattoos, one in approx. 1985 and one in approx. 2006 done by someone who I am assured is very competent). And several hospital visits in recent years. But people say that hospitals are too careful for this to happen. I am feeling stigmatized. I finished my treatment and didn't try to hide the fact that I was receiving it. I didn't broadcast it but I wasn't ashamed. Why should I be? I just get the feeling that people are questioning my behavior. I'm a good person. I don't deserve to be shut out of a job or to have people be afraid to be around me. It's really bugging me. I know I know, my mental state isn't 100% yet as far as feeling side effects. I am starting to wish I had just ignored it, like they say NOT to do on that TV commercial for Sovaldi. I wasn't even feeling sick with it. The most likely scenario for my contracting this is the 44 year ago IV drug mistake. If I lived 44 years with no symptoms, then maybe I should have just ignored it. The only reason I went ahead with the treatment was because I got it paid for. Is anybody else feeling this way or experiencing their lives changed for the worse just by knowing that somewhere along the line they contracted this and would have been better off not knowing?

I know that sounds really negative but this forum is for voicing our concerns, right? It would be nice to hear whether anybody else is questioning these things.

Offline Anette

  • Member
  • Posts: 61
  • Soon just transplanted, not transplanted with Hep
Re: Why do so many people have this?
« Reply #1 on: July 17, 2014, 01:49:36 pm »
I got infected in hospitals in 1978, knew nothing until 2010 on routine check by a doctor. noticed immediately that I was "different" by my friends. I could invite to dinner but  no one came, coffee was okt. I was/am like a alien. Dont touch or be touched. Other dont care, im old  same Anete but some think im a living deadlly virus. Even personel i never met before at hospital look scared of me when i say i have Hep C.
In the begin of 2010 i was ashamed but after my transplantation i was 100% open with it.
Now i know who my real friends are. Many of them i have "deleted"
Genotype 1a

Offline Abbas Girl

  • Member
  • Posts: 16
Re: Why do so many people have this?
« Reply #2 on: July 17, 2014, 02:26:33 pm »
I am so sorry you are having these feelings.  I am so very comfortable in my own skin that I don't let other people identify who I am.  My church and my family has been very supportive of me and I don't let anyone negative change my attitude.  I don't know how I got this and as I tell people....are you sure you don't have it?  I educate people on what this is and anyone can have it.  If they are afraid of me, that's their problem not mine.  I know God has allowed me to go on this journey for a reason and it is not to be negative, it is to be positive.  I also have very few symptoms but I want the cure because I know my liver is being compromised.  Hold your head high, we are just living with an odd virus that can happen to anyone!
Geno Type 1a
Interferon/Riba non responder 2006-2007
Sol/Oly 2014 (12 wks) relapsed

Offline Mpetrecz

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  • Posts: 50
Re: Why do so many people have this?
« Reply #3 on: July 17, 2014, 03:18:12 pm »
You know what I think?  And I'm not a conspiracy person, but I think the blood banks, hospitals and medical profession don't want us questioning this...so a stigma is developed of drug use and risky sexual behavior....to keep us in the closet.  And maybe risky sexual behavior and I'm sure sharing needles is contributing...but I know this wasn't me....and I know I so many people that it doesn't fit them either. So no, I don't let the stigma define me, and won't let it define me.  I had blood transfusions and I ran on an ambulance back in the days of scoop and run with no gloves...so do I know how I got it....no....does it keep me up at night....no.  I am not in a closet over this,lol.I talk to people about this,...I'm no expert, but I share what I know,  my husband has lived with me as a husband way before we knew I had this disease.....his mom has hep c also....he has lived his entire life with hep c in his homes,,,,does he have it? No.

Offline sasumo

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  • Posts: 4
Re: Why do so many people have this?
« Reply #4 on: July 17, 2014, 03:24:45 pm »
Oh Patsy!  You are struggling with the feelings of how did this happen to me?  Anyone is capable of getting it, and I am not so sure that tattoos are that far fetched.  Even an excellent tattoo artist has to have clean tools.  I do know that I got mine from a blood transfusion in 1975 when they were not testing for it yet.  I have never had any symptoms either, and found out through a random blood test.  I was in shock when it came back positive in 2000.  Since I never had any symptoms, that gave me the freedom to wait for the new treatment that has been very easy on the body unlike prior treatments available.  I've been able to go about my life, work, etc. I just finished Sovaldi and Olysio combo on Wed. and the virus is now undetectable.  I can only hope it stays that way. I know some day we are going to be able to look back and say, yes, I HAD Hep C before, but now I don't!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Why do so many people have this?
« Reply #5 on: July 17, 2014, 03:45:31 pm »
Patsy,
Thank you for speaking up. This helps us all.

You probably got it from injection drug use, because a one time use with shared syringes/etc is the highest risk factor of those things you mentioned.

As for stigma - yes, it is stigmatized. Good for you for not being ashamed. This is how we can stop stigma.

Why do treatment if you feel OK? Because:
- Once we start feeling bad, it can be too late
- The older we get, the faster hep C progresses - we can be fine for 40 years, and dying in the 41st
- On average, people with hep C die 15 years earlier of all causes (heart disease, cancer, stroke) - not just hep C
- The freedom of not having to worry about infecting others is amazing

These are only a few reasons - I could go on and on. I've lost many patients and friends to hep C. It is an awful way to die.

As for sounding negative, this is how we work stuff out. It's OK (It would be a terrible world if we couldn't complain some of the time). However, right now you are just finishing up treatment - it will take awhile before you get your head back, but until then, do whatever you can to pass the time in the best way you can. Watch comedy, stay away from the news, and deal with difficult situations and people later.

Feel free to express whatever you want here.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Why do so many people have this?
« Reply #6 on: July 17, 2014, 04:56:08 pm »
I for 1, cannot wait for the day I get virus free. 43 years of stigma, dealing with fatigue, trying different ways to feel better, seeing family and friends die from it.
It does not matter where it came from, being aware of all the ways does matter now.
More importantly is to get rid of it from our bodies. It sucks just like Lucinda says.

I got it from drug use, I know it. Am I ashamed, I should be because that is not good behavior. Since I don't do it now, I am still reaping what I sowed.
It is behind me and I let it go, as that was a trial in  itself. Thank God there is hope for the future.
Patsy, when you find out you are cured, you will feel even better sharing your experience with those that need your knowledge.

Offline Mike

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  • Member
  • Posts: 993
Re: Why do so many people have this?
« Reply #7 on: July 17, 2014, 05:44:14 pm »
Unfortunately, the general public views a Hep-C infection the same as an HIV infection: the bottom rung of the disease spectrum and associated with poor choices and behavior. In addition, Hep-C came to light during the HIV epidemic, as it was only diagnosed as a specific disease in the early 90's. This was about the same time public awareness increased with HIV, when folks like Magic Johnson came out with his status, and numerous celebrities were ding from AIDS. This forever linked the two in the public conscious - and the associative stigma. 

Most of this is due to ignorance and prejudices - but nevertheless it is something a lot of us have had to deal with over the years.

I believe this is going to change with the Sovaldi revolution and the high cure rates that are currently occurring, and will only increase with new, improved drug combinations.

I truly believe we will see Hep-C wiped out in our life time, given the new treatments and with the advent of a vaccine.

Best wishes, Mike

Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline patsy

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  • Posts: 27
Re: Why do so many people have this?
« Reply #8 on: July 17, 2014, 06:15:42 pm »
Oh my God, and I only did it once! And it was, I said 44, 46 years ago! Geez. My little part time job may have found out somehow and now they aren't giving me any hours. I have sent two emails asking why I'm not getting hours (not mentioning what I suspect) and haven't received a reply from either. And I loved that job! I am just wondering if that is why, not confirmed yet. I really don't know how I can get another part time job at my age. Guess I better start looking. My life took a turn (not just the Hep C) that put me in a place I never expected to be at this age. I need to do something about it though. But what? Sorry for the "poor me" rant guys. I bet there are stories just as bad from other members here.

Patsy

Offline Bucky

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  • Posts: 341
Re: Why do so many people have this?
« Reply #9 on: August 13, 2014, 12:03:32 pm »
Oh my God, and I only did it once! And it was, I said 44, 46 years ago! Geez. My little part time job may have found out somehow and now they aren't giving me any hours. I have sent two emails asking why I'm not getting hours (not mentioning what I suspect) and haven't received a reply from either. And I loved that job! I am just wondering if that is why, not confirmed yet. I really don't know how I can get another part time job at my age. Guess I better start looking. My life took a turn (not just the Hep C) that put me in a place I never expected to be at this age. I need to do something about it though. But what? Sorry for the "poor me" rant guys. I bet there are stories just as bad from other members here.

Patsy

Hello Patsy, 
Now, so you experimented once many years ago. I understand this because it was the party culture of the time. I am not judging because I am far from being a Saint. You can contract this from snorting drugs using straws or rolled up money after someone else. Cocaine caused nose bleeds and blood was passed between people. This has come to light in the past few years as more people are seeking treatment and being honest with their care provider. This question is now on the intake interview that my clinic does for new patients. I used to be on the Nose Candy in my twenties and snorted it using straws after people I did not know had just used. I am glad that this is now being reported as a mode of transmission because you mention HepC and the first thing most people think is IV drug user. Snorting was so very common back in the clubs that I believe this is why so many Baby Boomer have it. I recently read where only 10% of the BBs have been screened and of them only 5-7% have sought treatment. Hopefully now that the treatments aren't so brutal more will get tested and cured.
Then there are people who picked this up getting a Tattoo. I don't know if you have any, I don't. I have recently been in a Tattoo shop with my nephew and it was a clean as a drs. office. The artists were wearing gloves and masks and the instruments were in sealed bags from where they has been autoclaved.
It can also be passed during intercourse but this is mainly in the Male Gay HIV+ community.
Some people don't have a clue how they got it but that doesn't really matter now. The mission is get cured and even as expensive as the new drugs are we have been given a real chance to send the Big C packing.
Bucky
« Last Edit: August 13, 2014, 12:09:08 pm by Bucky »
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Mike

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  • Member
  • Posts: 993
Re: Why do so many people have this?
« Reply #10 on: August 13, 2014, 12:38:17 pm »
The link between snorting a drug and sharing the straw/tube and Hep-C infection has been known for at least 15 years, which is when I found out it.

In fact, I was asked about this when I was dx'd in 2000.

Additionally, cocaine is not the only drug that is snorted: PCP, heroin, narcotic pills, which are crushed, meth and so on are commonly snorted.

Simply put, any powder that is ingested through the nasal passage, causes the membrane to dry, which cause cracks that can lead to bleeding.

If the snorting tube is shared, all that is need to transmit the Hep-C virus is a speck of blood (doesn't even have to be visible), which can enter the nasal membrane without much resistance. Once the membrane is breached, it's a mainline to the blood system.

Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Bucky

  • Member
  • Posts: 341
Re: Why do so many people have this?
« Reply #11 on: August 13, 2014, 01:25:11 pm »
The link between snorting a drug and sharing the straw/tube and Hep-C infection has been known for at least 15 years, which is when I found out it.

In fact, I was asked about this when I was dx'd in 2000.

Additionally, cocaine is not the only drug that is snorted: PCP, heroin, narcotic pills, which are crushed, meth and so on are commonly snorted.

Simply put, any powder that is ingested through the nasal passage, causes the membrane to dry, which cause cracks that can lead to bleeding.

If the snorting tube is shared, all that is need to transmit the Hep-C virus is a speck of blood (doesn't even have to be visible), which can enter the nasal membrane without much resistance. Once the membrane is breached, it's a mainline to the blood system.

Mike
Mike, Thanks for adding to my post. When I found out that I had the virus it was around 1983 when my liver panel was abnormal. My PCP (not the kind you snort) just referred to it as nonA-nonB. I didn't know exactly how long ago the connection was made but the information was really not made known to the general public until these wonder drugs came along.
HIV has/had the headlines and until the DAAs came out and we were still somewhat in the shadows. I think that the medical profession is getting out the info on snorting now since it isn't quite as damning as being an IV drug user.
Bucky
« Last Edit: August 13, 2014, 03:12:47 pm by Bucky »
I HAVE SLAYED THE DRAGON.....CURED SVR24!

 


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