Newly dxd, viral load 180,000 RNA quant, 5.3 iu per ml

[kiwi680]

Hello All!  I'm so grateful to have found this community!  I'm 57, female and pretty much reeling from this news.  My husband of 27 years is supportive in his own way, but would rather ignore the situation.  I haven't told anyone but  him and do not plan to, altho at some point I need to tell my grown children so they can be tested. I'm feeling a little panicky at this point, but also relieved there's an explanation for how poorly I've felt for so long.  

The mostly likely infection route for me is the multiple surgeries I've had beginning in '83, that's my best guess at least but understand there could be other mundane ways.

This dx came from my gp, after ongoing elevated EFTs. (Yes, Hep C testing should be mandated as routine!)  Her office set an appt. w/specialist for this coming Aug. 17 as he's on vacation until then.  I assume at that time I'll be genotyped and probably undergo biopsy.  The viral load # (if I'm using the term correctly) of 180,000 is low, yes?  But that doesn't necessarily indicate less or more liver damage, right?  If they feel I can wait until Aug. for further treatment, is that a good sign?  

I had hep A in '78, from food contamination, was very jaundiced, etc.but it seemed resolved with treatment.  Could it have been Hep C instead?  But that was prior to the surgeries....

Also, I have an upcoming dentist appointment and I know this is a divisive topic, but I've decided I must inform my dentist, tho I really don't want to!

Knowledge is power and the more I read on these forums, the more empowered I feel.  But the posts also contain issues and concerns I hadn't thought of yet...then I get a little scared.  

Thanks everyone.  

[kiwi680]

Thanks all for your encouragement and insights.  I would feel very alone without this forum and your support.  I can do this!

[nygirl7]

Of course we aren't horrible people (even if some of us did make questionnable choices when we were younger and stupider) but believe me after just watching the girl with stage4 breast cancer die (they found out later she had HCV as well) and listening to everyone in here talk about how it was the damn hep that killed her not the metastisized breast/brain/bone/spine/liver cancer - that was the day I went nutso and got up and started screaming at them to shut up that I used to have hep and it could be cured and was NOT what was killing her blah blah blah.

Of course they didn't believe me..........why would they? People are ignorant about what they don't want to know exists in the world. It'd be easier to explain that we are vampires ;)

[Diane12855]

I got the "1 in 12" from the "world hepatitis day" videos that I saw a while back on youtube. I think it was last month. I don't know how they can come up with numbers anyhow since so many people are undiagnosed for years and years. My main point was... there are a LOT of people like us, and we shouldn't be ashamed of our disease.

It's Monday... 3 days after my shot, so if I'm not making any sense, that is why.

Diane

[Diane12855]

My point exactly! We aren't horrible people! The original poster talked like she was so ashamed that she had this horrible virus, and I was responding to her thoughts... or what I believed were her thoughts anyhow.

[Trinity4]

I never thought I was a horrible person because I contracted hepc and I don't give a rat's patoot who knows but it's not something I bring up in general conversation.  If it's warranted I'll talk about it, otherwise, I'm just like anyone else.

[Bill1954]

I think global HCV seroprevelence is around 3%; the ratio be roughly 1:33 rather than 1:12, but your point is well made otherwise, Diane. We could certainly improve screening methods, particularly in developing nations, from what I understand:

“The prevalence of hepatitis C virus (HCV) infection is estimated to be 3% worldwide. Regional variation is related to differences in risk factors, health care practices, economic issues, and societal norms. In recent years, blood screening programs and improved public awareness have led to a reduction in new cases of HCV in western countries. Despite these advances, new infections continue to occur, particularly in the developing world. An understanding of the global epidemiology of HCV provides the basis for generating public health initiatives to address this growing problem.”

http://www.springerlink.com/content/q7r274h603286h52/

[nygirl7]

I personally think that if the people who are infected would stop acting like we think we are horrible people, the rest of the people would. "

Unfortunately, bring up the subject someday about somebody besides yourself - like Steven Tyler from Aerosmith (well not the best example because everybody knows he did tons of drugs) but you get my point.  People will say a lot of really horrible stuff about 'those types of people who have hepc from being promiscuous drug addicts' and you won't hear anything about getting it from dentists or transfusions or birth........say Pam Anderson one day and see the response even though we all know it's not sexually transmitted nobody is going to say "oh yes she probably got it from a tattoo" people don't even believe that very much but they sure do believe it's sexually transmitted.

Unfortunately it's something people just want to sweep under the rug - until they themselves get it.....then oh gee it must have been the dentist/IV/tattoo/nail salon/a mosquito!!!!!

[Diane12855]

1 out of 12 people in the whole world are infected with hep c. I personally think that if the people who are infected would stop acting like we think we are horrible people, the rest of the people would. I've talked about it with quite a few people and not felt like they condemned me or thought I was a bad person for having it. I know the main way of getting this is IV drugs, but now they are finding many other routes of infection... like snorting cocaine, and sharing straws. I don't think there are many people in their 40s, 50s, or 60s, who didn't do something crazy when they were in their teens or 20s. They are all at risk of being infected, and if we don't tell them, how will they know? Doctors aren't doing a very good job of screening people.

[Bill1954]

Cool; dentists are supposed to practice universal precautions regardless, so logically it shouldn't make a bit of difference either way. I'm sure they appreciated your candor anyway. Good luck with the upcoming appointment with the liver doc; and take care in SoDak--

Bill

[kiwi680]

for all the sound advice and reassurance.

My recent dental visit went very well.  I disclosed HCV on the questionnaire ..'Guess I shouldn't have felt I was their first and only patient with it.  They didn't even blink and showed me every courtesy.  Whew!  One new fear laid to rest.

On 8/17 I see a hepatologist for the first time, a little scary but I will deal with it, armed with help from you good folks.  This gal in South Dakota is much obliged!  

[kiwi680]

I already feel better, thanks to your reassuring and quick responses.  It's so validating to have an explanation for my symptoms!  'Have been berating myself for "laziness", dragging around the house so tired, no interest in social scene...and don't get me started on raging nite sweats and joint pain!  LOL  Thanks everyone so much!  

[Bill1954]

Hi there, and welcome to the discussion group. It looks like you’ve already done some reading and become rather well informed of the basics.

As the subject of treatment arises, be sure to discuss the STAT-C drugs in late phase clinical trial. One of these, Telaprevir, will potentially be approved and released for use as early as 2011. This new class of drugs will initially be used in conjunction with the current interferon/ribavirin combo therapy, but have demonstrated dramatically increased efficacy.

With HCV genotype 1 , the current meds prove successful in roughly 45-50% of patients; combined with the new drugs in trial settings, this figure has increased to 75%.
Pretty cool stuff, and possibly worth postponing therapy in favor of their future availability.

Talk with your doctor about Telaprevir and Boceprevir; and get his/her take on this topic.

Best wishes,

Bill

[Trinity4]

I told my immediate family and not a soul at work.  It's really isn't anyone elses business.

I had some periodontal surgery done a couple of months ago and informed them I had hepc.  No big deal and wasn't treated any differently from those who do not have hepc.
They did not take any extra precautions the same safety measures are implemented for all their patients.

I never thought it was my job to educate people about hepc.  It was hard enough undergoing treatment without having to explain the whys and what-fors.  In my opinion, it's best to keep health issues out of the work place unless hepc treatment directly effects your job security and then it's a matter of informing human resources, not co-workers.

Welcome and good Luck moving forward,
Trinity

[djbn13]

Welcome aboard.
I think all of us were stunned to find out we have hepc.
The important thing is not how you got it but now that you know you can do something about it.
There are a lot of smart people on here that will help answer your questions.
I found out in April and I'm still waiting for doc appointments etc.
Good luck,
Dj

[Diane12855]

Welcome to the community!

I know what you mean about the shock of first finding out you have hep c. It knocked me for a loop too at the first of the year. Your viral load is low, I have heard of people on here who had over 50 million.

This disease progresses so slowly that the doctors don't seem to be in a hurry to get anything done, which is a major source of frustration for new patients who want to know NOW.

I read today that a couple years ago they discovered some clinics in Nevada that were re-using syringes on colonoscopy patients when they put them to sleep. These were GI doctors who seemed to think it was OK to just change the needles to save money, and people got hep c...So there is no telling where a LOT of people got infected. Just imagine... if a doctor that TREATS hep c is that careless, what about all the other doctors out there?

I personally told all of my family. And I didn't apologize for it. There is so much ignorance out there that people need to know they could be infected too. Of course we will all support you no matter how you feel about talking to others about your hep c.

We are here to help each other down this long road.

Diane