thinking out loud here

[debnevada]

For those of us who have been on here for more than a couple of months and also, the long term experts......

Does it seem like the anxiety level about Hep C has heightened lately?  We are seeing a lot more folks who are worried about exposure and it makes me wonder.....why?

On the one hand I think it is GREAT that there is more attention to HepC which will get cases diagnosed earlier, hopefully and more SVRs, hopefully.

On the other hand, ribarage has me going....oh jeez, quit worrying so danged much when you don't have anything to worry about....

Has anyone else noticed this trend or am i just being a rude jerk for "the other hand" comment above?  Sometimes I lose patience when I know I shouldn't  - but I really think there's a lot of "new action" going on, huh?

Your thoughts?

Deb

[debnevada]

that post.

[Proactive]

This could explain some of the one line (poster never posts again) off the wall posts we've been finding here lately.....I pulled this from the yahoo vertex stock message board, notorious for moronic uninformed banter and spam--children at play for the most part.Not the kind of promotion one likes see.;^)


"The Hep Forum at Med Help International is sometimes a good place to post. Good info and everyonce in a while, a really good laugh. There has been some crazy posters lately, young geeks out of school for the summer, so sometimes, ya gotta sift thru the ****.

But there are some of the lab rats there, no names because I want to be respectful of their hard work and privacy. But anyone with Hep C needs some support, no one could ever know exactly what it is like to have this virus with such lousy options for treatment until you've been there, done that and then been told..."it didn't work." I could have turned into a real biotch, but got lucky and found a good attitude until the odds get better.

So we'll both cross our fingers for teleprevir and hold on tight for the rocky ride."

[pitter]

thanks for the support

[meki]

LMAO!!!

All those posts are gone... Sigh...

Good thing I ghost around a lot ---- cause I'd be missing some of the funniest stuff that happens on this board! LOL!

Hey -- hugs to you guys!

Meki

[jools57]

there's a paper towel guy??LOL...going to check that out!!!

[Alady1620]

well, apparently, we are not allowed to dou**e on this board. LOL

[Alady1620]

I just went over to view the other side of the board and there are quite a number of them.  They will disappear soon tho.

What is up with that paper towel guy?  What a *********.

[jools57]

There is such a lack of education re: hep c....a few months ago i saw the very first ad on tv for hep c(i live in No. Nevada), but that was the first and last time i saw it...

Deb...I am so sorry you had that experience at the dentist...people tend to freak out because they dont understand the disease..
.without knowledge we perish...the Govt. needs to educate...the media needs to be responsible, and dispense correct info...

Blessings, J

[pitter]

and I think I got the virus either through dental work I had done, or, I was a hairdresser for 22 yrs, and I had a client at one point that had a son who was very ill...she told me he had hepatitis, I knew nothing about it then, ans she asked me to cut his hair in the convalesent hsp. he was in..So I did , 3 times...and he was very ill, well the last time I cut his hair there- I cut myself on the finger while I was cutting his hair...and it was around that time that I came down with serious arthritis symptoms.(looking back).I took alot of steroids for about 1.5 yrs, and I got somewhat better...now 10 yrs later I find out I have this thing!!! ok I'm done crabbin about it .Thanks Pitter

[pitter]

(oops I did it wrong) (twice)
well I have a complaint to add to this!!! today Aug. 06 , there was a news piece on channel wfsb..in CT....apparently this wacko guy who killed and molested his niece..(God help the families)..well he spat on a news reporter, and the news reporter was taken to the hospital bcz the guy has HCV...and he spit on the reporter !!!!  oh great ...now everyone will think they are going to get HCV by being spit on!!!! Now I am afraid that the people that  I told (or someone else gossiped ) that I have it, may think that they can get it by being spit on!!! how do we get the correct info out there??
thanks, pitter...sorry if I upset anyone with that...

[debnevada]

thanks, Meki, as always you are an angel. BTW, my sister lives in Anchorage and works for the VA..

Lady, I think in the six months or so that I have been on the board, i'm only just seeing a wave for the first time.  So I'm not a sage yet but I'm workin' on it!  Thanks dear

Jasper. Who knew you were such a sweetie.

deb

[Alady1620]

I haven't noticed any more or less people posting about fear of infection than usual.  They come in waves.

[meki]

I think it is a number of things Deb...

For one --- people who are in their 40's 50's 60's are just now discovering they have had HCV for years and years.

For two --- 3 very well known celebrities have had a lot of exposure in the media in the last couple of years regarding HCV. (Pamela Anderson, Steven Tyler and Naomi Judd).

And For THREE: While it isn't a lot of exposure --- HCV is finally getting some exposure... Doctors are starting to understand that elevated ALTs and ASTs need to be checked sooner than later.. Doctors are getting educated as more and more cases come up...

Once a person is tested --- it's in their minds --- and minds play tricks on you... Especially in this advanced knowledge sharing age.... Yanno? The internet opens a pathway for those who are afraid of knowing what is happening inside their bodies --- but just can't help but look up their symptoms.

I think we're becoming a more proactive society when it comes to our health - however - we're still in the dark ages.... when it comes to getting that medical help.

Anyhow --- yeah --- some are trolls - but most people honestly ---- until they get hit with the disease or diagnosis --- or know someone close to them that has ---- have NO CLUE how the mechanism of transmission or the symptoms are... Some of them are grabbing at straws (no pun intended). LOL!

So super hugs - enjoy the Riba Rage --- It's the ONLY TIME IN YOUR LIFE --- where some guy can't blame your mood on PMS. LMAO!

Meki

[geterdone]

Sorry to hear about the dentist ordeal, I think I would be numb for a time too.
Ribarage? Nooooo lol
jasper

[Forseegood]

was going to email you, was wondering how you were doing and if you've heard anything from SFbaygirl...hope youre feeling better and better, wonder about you!

[jmjm530]

I think you're referring to some of the recent posts where someone expresses fear of contracting hep c when in reality there is no risk.

I've been here for two years now and these types of post are pretty common. You may see a bunch for awhile, then they disappear and then they come back. Some speculate that these posts are a form of internet 'trolling" and it's quite possible a few are. However, these types of posts appear on most health boards from time to time and I believe the majority of them (not all) are genuine and due to lack of knowledge about the disease, in this case HCV. The average person knows almost nothing about HCV, so imagine the types of thoughts that go through their mind when they find out they may have been exposed.

-- Jim

[debnevada]

I think you're absolutely right. I think that's really sad.

I know I'm taking it personally but it makes me feel so weird that folks are so terrified by something I (we) have that they go off like that. I believe in trying to help calm those folks down but afterwards, it's like......ewww......they are so scared of what you have that they lose their minds.

And we have it.

I guess all we can do is be patient and educate.

[debnevada]

See, that's what I'm talking about....i had NO IDEA about the Canadian blood taint.  This forum is really so incredibly educational for me. I know I'm a better self-care-manager because of it and also a better advocate.

The US government does have its head in the sand....think about the movie "The Band Played On", which is an object lesson for the feds when it comes to HCV.

But the one thing that upsets me is the perception. Sure, some of us got it through IVDU. Some of us didn't.  In any case, it is terrible that we can't be all that "open" about our disease because we'll have to spend so much time educating and explaning.  I went to a dentist a couple of weeks ago with a boutique implant practice who declined to treat me because of HCV.  True story.

I think I am becoming a grump about what's happening with this disease. When I hear about waiting lists for treatment I get scared for those who aren't in the cycle yet. What will happen to them?

[PSP-n-Me]

Hi sweetie - Hope you are doing okay and have few sides today - Me, I feel like regergatated (sp) doggie doo doo today LOL

There were 3500 people infected in Canada with the HCV, from blood that was sold to this country for the USA - Bill Clinton sold blood from prisoners, full well knowing he could not use it in the USA - so he decided to make money off people's lives - what a guy!!  Any whooo - the Government here has passed law to make monetary resititution to those infected with the tainted blood - I am not sure how much money will be given to each person...The Health Unit here (similar to our Health Department) kept records of all persons receiving blood transfusions during a certain time frame and those people have been notified (at least that is what the press tells us)...When I was diagnosed with HCV, I had to register with the Health Unit (all infectious diseases need to register - it's the Doctor's responsibilty to do this) they wanted to assure me that I would be compensated for this...I quickly refused saying I was an American and it was my country that "served" me the tainted cocktail I received in a transfusion, not their's..

So to answer your question (I know I am long winded and ramble these days) all of those infected have been notified, according to the press, and I beleive the final count was 3500...

*dippity do do*

[Kalio1]

Here in my county, not only my doctor, but all the doctors who deal with HCV have treament WAITING LISTS now or they can no longer "accept HCV patients"
The NP told me that there is a big increase of positive patients in our office and I have read here for a few years now and it seems it is increasingly difficult for people to find doctors available to treat their HCV. The govt. utterly ignores us as a disease population it seems.
Now that getting an infection in a hospital is the third most likely way to die in America, and that is where I contracted HCV, I wonder if that is contributing to the increase. I also think the huge rise in popularity of tattoos and the fact that there is no system in place to assure that HCV isn't being passed around that way is an issue. The tattoo industry itself has done their own policing, but there is no oversight via our govt. The tattoo guns can not be completely dismantled and sterilized with heat, so I suspect that little piece of the gun they can't dismantle could be at issue. Also manis and pedis are a risky arena, many many people being serviced, often using the same tools, often with inadequate sterilization and again, no health or govt. oversight to spot check.
Universal precautions can not protect against HCV completely, HCV is a very durable virus and can live for days on any surface. It can't be killed with disinfectants either. If you look on the bottle of the disinfectant at the hospital, it does NOT list HCV as one of the things it protects against. I know, I looked. HIV is listed, but not HCV.
Another problem is doctors and nurses are put at high risk for HCV in their jobs yet they are not required to be tested. I read an article in the NYTimes about an anesthesiologist who passed it on to several of his patients unknowingly.
Dentists us heat to sterilize and heat does kill HCV so I feel the risk at dentists is greatly reduced risk by this fact but you can't sterilize the surgical arena that way.
Didn't you also contract this from a surgical procedure?

The govt.  has it's head in the sand about HCV but even by THEIR OWN statistical estimates, millions of Americans have it and don't know it.

I hope you are feeling ok, I don't visit often but I read your story and I know you have had many challenging events health wise and otherwise this year. Hang in there, stay strong!

[FlGuy]

To your initial comment.  With the tainted blood import to Canada from years ago, do you get the idea that most of the Canadians affected know it by now?  Or, are they still discovering large numbers of cases?

[geterdone]

Deb I think it is a little of both and all the above. MedHelp, in its directory does not break down the Hepatitis forums as A B C it is all grouped into one category. Maybe in the future they will set up individual forums. Nature of the beast I guess.

jasper

[PSP-n-Me]

did I mis read the original post?  I thought you were talking about real life issues, not Internet forums - sorry *dip*

[Andiamo1]

You are never a rude jerk, so don't even think about that.

If you are commenting about all the questions here, I sometimes think that the forum has been discovered by trolls that are looking to disrupt anything that they can.  I definitely am experiencing extreme Riba rage these days, so could just be me.