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Are you number 12?

post #1 of 16
Thread Starter 
"With World Hepatitis Day May 19, the World Hepatitis Alliance is launching a viral campaign to raise awareness about the 500 million people worldwide who are living with either hepatitis B or C. One in 12 people on the planet is infected with one of these two viruses, yet the majority do not even know that they are infected."

A dear friend of mine has Hep. C. I had no idea how horrible this disease and treatment is until someone I know found out that she has it. That's what one of the ribbons I have is for - Hepatitis C Education and a hope for a cure that isn't as terrible as what they have currently (think the worst side effects of chemo, and add some more...).

When I saw that World Hepatitis Day is May 19, I wanted to use this opportunity to educate a few more people. It's not always about dirty needles (drug or tattoo) or dirty sex. But it IS devastating, and it is contagious, and it is treatable.

Even knowing someone personally who is going through the treatment, I was surprised that the number is as high as 1 in 12. Made me really stop and think.
post #2 of 16
I used to work for an oncology group and we often treated patients with Hep C. It is very expensive and makes you feel like you have a continuous case of the flu.
In Feruary, I got a Tetanus shot and the nurse accidentally stuck herself with the needle that had been used on me. She was also pregnant - very scary for her. So they did a full set of lb tests and I am good. Sometimes I worried after all of the blood exposure, even using correct technique, that I might have contracted something.....
post #3 of 16
I am Number 12.

In January of 2007, I found out I was infected with Hepatitis C Virus. My doctor found it during a routine lab analysis for a totally unrelated health issue and while I was glad to finally be able to put a face and name on what had been making me so ill for so long, my Lord what a face and what a name!

As Heidi mentions in her very timely message, being infected with Hepatitis C Virus doesn't necessarily mean that one has engaged in IV drug use or risky sexual behavior, even though these are the most likely routes of transmission. I have been in a totally monogamous, heterosexual relationship for over 20 years. I have never been an IV drug user. It is believed that I was infected as a child, at the age of 14 when my tonsils were removed. We found out much, much too late that at the time, there was an outbreak of what they then called "Non-Specific A/B Hepatitis" on the surgical ward of the hospital where I was a patient. I recall being ~very~ ill after that surgery, much more so than a normal tonsilectomy would experience.

For the past year, I have been undergoing treatment. There is no cure for HCV. The best they can hope for is to cause the virus to go into a state of remission. But even then, the virus hides in the immune system and coming down with any little ailment that causes the immune system to mount a response can release it back into the blood stream where it again becomes active, killing the liver.

I am blessed to live nearby Richmond, Virginia where the Medical College of Virginia is located. There is a hepatologist there, Dr. Mitchell Shiffman, who is doing some great work in HCV cure research. My stars lined up right when I was accepted into a program of study for a new dosage of the chemicals currently used to treat Chronic HCV and as I mentioned, for the past year, I have been participating in this trial sponsored by a major drug company.

But unfortunately, after only 4 weeks post-treatment, my virus is back. I don't know what my immediate future holds yet, as they wait for my overall health to recover from the side effects of treatment, but I plan to enjoy food again, live in the moment, and take in all that I can before I have to go back on treatment again. The second round is supposed to have yet a third chemical added, this one for keeping the white blood cell counts up. That was the worst part of it for me ... my platelet count bottomed out and I felt so weak and dizzy all the time, and I fell a lot. I brusied easily from the low blood counts and I looked like someone had been beating on me! Hopefully, this new drug will assist with that aspect of it.

As my way of participating in World Hepatitis Day, I strongly urge everyone to talk to their doctor and if warranted, get tested. Even if you aren't in any of the "high-risk" categories, you could have innocently acquired this hideous virus like I did!

I am a 48 year-old, happily married, white woman and I am Number 12.
post #4 of 16
I hope you feel better soon.

with as much travel as i have done in S.E.A ,
i have been luckly not to come accross that.
always tried to keep up to date on my shots.

But still i some area it seems that just about eveyone around has it from what i was reading. I know my doctor has tested me several times when i came back, just to make sure. I was reading where they think some a people are starting to become immune to some types *i dont remember what type they said. Due to infection was so common..

scary stuff
post #5 of 16
I wear my ribbon with pride, because until Gaye educated us i didn't know the full history of this disease, but my eyes have been opened now.

post #6 of 16
Wow Gaye - thank you so much for sharing. As you say, it can happen to anyone, and you are really quite remarkable with what you've been through.

I had all the routine testing including hepatitis when I fell pregnant, but still, you should never be complacent about these things and though I was fortunate there was nothing wrong, many people don't find out except by accident.

Max and I are routinely tested for these diseases because we are blood donors and we also both work in hospitals - but there are many who don't qualify to donate blood or wouldn't normally have a reason to be tested. However, if a simple blood test once a year could help you discover this illness early on, then it's absolutely worth it.
post #7 of 16
I think a lot of people believe that this disease will never touch their lives, but that 1 in 12 figure Heidi provided and Gaye's experience show that's just not true.

Unlike Susan, I was already familiar with Hepatitis C when Gaye told us about her diagnosis, because I'd seen what treatment for it was like for one of my favorite students. He made it through, and so far has fortunately remained in remission. In his case, the disease was possibly sexually transmitted, so I would also urge people with changing/multiple sexual partners to have themselves vaccinated.
post #8 of 16
You have posted a VERY hot topic for me. Want to see me get fired up, well this is the way.

We have a doctor in this city we call Dr. Death. He owns like 6 or 7 Endoscopy centers in Las Vegas where they put people through like cattle on an assembly line. Colonoscopy's every 15 minutes that should take an hour.\\

End result - Dr Death tells his nurses, doctors and anesthetists to re-use syringes and vials to save money and save time.

Now for the good part, 100 people a DAY are testing positive for Hepatitis C

8 have been positively, for sure linked to having endoscopic procedures done at Dr Death's place. The dude has only 3 million in insurance (oh joy) and they did tort reform here a few years ago so people will not get much for their anguish.

The good old boy syndrome is alive and well in Nevada as many on the State Medical board are buddies of Dr Death. This all became public on February
27th of this year and just yesterday the Medical board says they are going to TEMPORARILY suspend the medical licenses of Dr Death and one of his associates.

My mother got a colonoscopy at one of Dr Death's centers. I had to threaten to sue my mother's doctor who referred her to Dr. Death's clinic before he would consent to giving my mom an order for blood work to be tested. Let me tell you, you threaten to sue a doctor and, voila, things start happening.

40,000 letters have gone out to people that had procedures done there with another 10,000 left to send. 50,000 people put at risk and not one darn criminal charge has yet to be filed.

Doctors make me sick. I would not have a colonoscopy done in Las Vegas if you paid me.
post #9 of 16
I'm very sad for anyone who is or has someone very close with this disease. My heart goes out to you!
post #10 of 16
I honestly never realized there is a stigma attached to having Hepetitis, that disgusts me more than words can say.
post #11 of 16
Originally Posted by ckblv View Post
Doctors make me sick.
Thankfully their not all like Dr Death
post #12 of 16
Yes - the Dr Deaths of the world are few and far between. I'm very saddened to hear of what's going on near Cindy's town - I worked in gastroenterology for over five years and screening colonoscopies are very important over a certain age. It's dreadful that they are being pedaled the way they are there.

BUT I have worked in medicine overall for nearly eight years, and I have nothing but respect for doctors - the vast, vast majority of them. We'd all be in a lot of trouble if they weren't around, and that's a fact.
post #13 of 16
Sarah, it is IN my city.

From what I am learning, when undergoing a Colonoscopy, once the endoscope is fully inserted it is withdrawn VERY slowly by the Doctor
while the Doctor, supposedly, closely inspects the colon for any irregularities and removes any polyps. That is the most important part of the procedure.

Dr Death would just pull that endoscope out in a blink of an eye.
One man has a colonoscopy there and was given a clean bill of health by Dr Death and a few months later was diagnosed with Colon Cancer and is dying now. ALL the doctors, nurses and anesthetists knew what was going on and many, very many participated in the re-use of vials and syringes and not one of these wonderful people that we entrust our lives with reported what was going on. Pardon me if I have lost faith in the medical community.

The president of the State Medical Board is a personal friend and business associate of Dr Death and so are others on the board. Any idea why nothing has been done? They are ALL culpable as far as I am concerned.

As soon as this debacle was made public the Nurse's board suspended the licenses of all the nurse's implicated. But the Doctor's get a free ride to kill more people.

In fact, another doctor is buying the centers (which are now closed) and he said he will re-hire the doctors that have been giving people Hepetitis. Isn't that just wonderful?
post #14 of 16
When my wife was a Safety Supervisor for Werner Enterprises, they had a driver die in his sleeper while his wife was trying to get to Dallas ASAP. He had Hepatitis C that he got from a transfusion when he was hospitalized after being shot and robbed when he stopped to supposedly help a woman give birth in a car by the side of the road.

In addition, I have an acquaintance who is one of the 40,000 who have gotten the letters in Las Vegas. She had some procedure done in one of those clinics.
post #15 of 16
We adopted a homeless heroin addict who has tested positive for Hep C. Thankfully she's not currently ill from it, but I did NOT know about the 1 in 12 number OR that May 19 is Hep C day! Thank you, Heidi, for starting this thread. !!!!!

I am HORRIFIED to read about what's happening in Las Vegas. What a nightmare for so many. It's just such a tragedy to begin with - irresponsible doctors should be held accountable!!!!!!!!!!

post #16 of 16
Hep C hasn't touched my life so far, but with the statistics I'm sure at one point it will. I've never understood why there is such a stigma attached to things like Hep C, HIV/AIDS, and other illnesses that attack the immune system.

My thoughts and prayers go out to all that have this. Finding a cure may be a long a difficult road, but it is out there.

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