Well - back a couple of months ago I was asking if CDC got my stats as being diagnosed with Hep C. Hmmm. turns out it is more than my stats they have -- they have my name, address, and phone number, etc!

I got a call from my County Health Dept - the Hep C unit. I joked with the woman saying, well, you answered one of the questions I had -- are my stats anonymous? (She did say, however, that my name is confidential??)

Anyway, she asked a lot of background questions (man they just love that '70's intravenous drug use thing http://www.healthboards.com/ubb/smile.gif and I at least got to list my prior fiancee who died of cirrhosis of the liver last year and my dentist that I left because of what appeared to me to be unsanitary conditions. They won't follow up on the former fiancee (records are confidential, you know - dead or alive), but they took the dentist's name.
They also asked if I had ever given blood in the past ... which I had many times in the '80's ... but they won't be following up on that, either.

Hmmm - not much help in trying to trace Hep C, I'd say. But one of the nice things that came out of the call was how pleasant, encouraging, and helpful she was. She offered her services for anything I needed in the future regarding Hep C, made sure I was vaccinated for Hep A and Hep B, confirmed I was in a dr's care, was glad my stats and tests where all good, that I wasn't a drinker ... and concluded her call by telling me that most people will never be bothered by this disease in their lifetime, so not to worry about it.

Actually, as much of a surprise as it was to get the phone call, it was a pleasant, very human and warm conversation.


Anybody else get a phone call from their county health department? It sure surprised me!!

Keep your spirits and attitude HIGH!

Diane

Very intereesting.

The folks at the CDC are convinced everyone (practically) got HCV from that 70's thing.

I doubt many are going to be as insistent as you to get other risk factors on their list.

They seem to just chalk that up to denial anyway. Aggrevating, isn't it?

thanbey

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www.hcop.org (http://www.hcop.org)
preapproved by moderator1

Hi Diane, I did the IV drug thing too from '69 to about '75 when I got on a methadone program. It's nice to find we have more in common.

I have not been called by the Health Dept. I remember when my ex-husband was diagnosed with HAV, the health department from his town called his mother. If they hadn't called, she would never have known he had it. And speaking of him, I have tried to locate him to tell him of my diagnosis and see if he has ever been tested; but I have not been able to find him. At least I tried. I still search once in a while, thinking he might pop up somewhere.

Love & Blessings, Karolyn

Hi Diane,

Nice to know that someone out there is not....."Please press 2, press 1 for english, etc., etc.," A live person? Aren't you lucky.

Don't know that I trust the "confidential thing"....I've been known to get calls and/or mail for information that was "confidential"

Since January of 2002, I've found that speaking out about HepC can only get you in trouble...very, very sad.

no phone calls like that here from anyone that i remember.

when a doctor starts the battery of questions about how i may have possibly acquired the virus, i answer that never having been a drug abuser, and only having one tattoo, what remains in question is the 99.99% of the opportunities to acquire it through an unsanitary medical procedure.

they usually stop the questions after getting that answer.

Diane, i'm glad that you feel good about the call you got. there are still some truly nice people out there!

onr thing i like to keep in mind when talking to anyone about my personal information is that no matter how nice, honest, helpful, and concerned they are, the notes they take will be there for almost anyone in their organization to review.

i'm sure that policies are different from one agency to the next, but it's my opinion that confidentiality begins with who you decide to trust with your personal information.

there are people out there who can be quite helpful in dealing with problems and will not allow your personal information be used against you. there are laws against that, but also loopholes in those laws that are used all the time.

i have worked on a questionaire that i require certain people to answer in writing before i will discuss my personal info with them.

its really sad to have to worry about legalities when we should be utilizing every amount of strength in getting well and learning about how to help others avoid our situations.

i hope that no one takes my opinion of privacy wrong. i could write a book on my opinion of ethics and simple legality of confidentiality of information.

if i truly believed that i acquired this dreaded virus from anyone i know, they would be the first people i would contact about it. also, if i had engaged in practices which may have exposed anyone to the infection, i would most definately encourage them to be tested and gain knowledge of the disease.

as far as the people i am close to, as a precaution, they have all been tested for the threat if infection.

ultimately, after disseminating the information about my status of being hcv positive, and from the actions of some of those i wanted to help protect, i resulted in paying a lawyer to obtain a restraining order to to prevent my personal information from being spread about. the restraining order includes the parties involved, their attorneys, doctors and anyone else in posession the information from dissimenating the info without the express consent of me or the court and that the court must inform me of any inquiries about my information.

Whew! i wish this would just have a cure!

God bless everyone!

Is This Real,

No problem - I'll answer any question, anytime. My life is basically an open book ...

I know you have expressed concerns before about Hep C being sexually transmitted and how you worry about that, especially being single. I have 3 major potentials for having contracted this disease (of course, there could be other things, too, like ear piercings - since 4 of my piercings came from the gun contraption ... & who knows? In fact, really, who knows if any hospital procedure or stay could pass the disease .... but I'm getting off track here. Sorry!)

My main 3 potential hits could be:

1. intravenous drug use - did this when I was 17 years old with a very small, close knit group of friends and family members over a 6-month period of time. We were all young, but my first husband was in that group and was just out of the military, so he could have gotten it from the jet vaccination that was used at that time - and passed it to us??. We shot up speed, strickly as a social weekend-kinda thing. However, we never used the same needle twice without completing rinsing - twice! - in alcohol. We were very thorough about that, since Hepatitis was reported to be transmitted that way. We were not junkies at all - just weekend partiers. That was 30 years ago, this year (1973).

2. Later, in 1980 through 1984, I met, dated, bought-a-house-with and got engaged to a man who died last year at age 50 of cirrhosis of the liver. He was a very heavy drinker -- lots of beer, scotch, whiskey ... which is why I left him in the first place... very abusive. He later got a job as a bartender, so I assume his drinking consumed his life.

The reason why I put him on this list is because he, too, was in the military during Viet Nam war and probably got the Jet Vac, as well. Also, he had broken his leg in 7 places skiing just before I started dating him -- and it is possible he could have had a transfusion for that.

I never did intravenous drugs again after 1973, so we did not share needles or anything. However, I was constantly plagued by unusual female issues when I was with him. I had the feeling that I was allergic to his sperm ... and was so convinced of that, that I inquired about that possibility with my GYN. I mean, I got dysplasia (pre-cancer of the cervix), yeast infections, constant discharge issues -- never a dull moment! Never had these issues before him -- nor since!! Not with any other partner - long term or short term!

My GYN at the time said it was a possibility I was allergic to his semen - she had heard of it before -- but it was highly unusual and there was no easy test for it. At one point, I was so desperate for an answer, that I came to my GYN appt with sample intact! But, there was nothing she could do to check this for me.

I have read somewhere in my earlier research of this disease that there were 4 known cases of male-to-female transmission of Hep C and no known cases of female-to-male. Of course, I cannot quote where I read that nor confirm whether it is accurate, but that was what I read. It got me thinking about that whole issue back in 1980-1984. I have been completely healthy female-wise since leaving him -- no further female problems at all! What would you think? A possibility of transmission?

When he died last year in NY state, his obit/funeral notice said he died of an undisclosed illness.

I know someone else who was married to him before I dated him, and I have asked her to get tested. So far, she has not.

I have asked my brother who is the only one around in our little group of social drug use back in 1973 to get tested. So far, he will not.

I have asked the County Health Department to please follow up on my ex-dentist's patients (my 3rd potential hit) ... but I will never know the outcome of that request. Interestingly enough on that front, this County Health department Hep C unit worker said she has heard things about that dentist .....?? Hmmm

Anyway, that's my story. I know it is rare (what, about 4%) that Hep C is passed sexually, but when I look back at that relationship, could be my body was telling me something was trying to invade it ...

I just wish I could peg this thing once and for all. The unknowns are rotten ... but my husband still has not gotten tested and doesn't seem the least bit interested in changing anything he does with me. He even dug at a sliver in my finger without regard to the blood oozing out (silly boy!). I am trying to be careful for both of us, but we've been together for 18 years now, and he constantly reminds me of this.

I wish I could relax and forget about this disease during sex though ..... I have to admit, it is very distracting because I worry about him .......

Keep your spirits and attitude HIGH!

Diane

Hmmm ... no one else around here got a call from the Health Dept right out of the blue? I know it shocked me and kind of scared me when that happened, but she was okay. Still, I agree with the confidentiality issues stated here by DD and Wes1212 and don't completely trust that at all. But she called me, so there's nothing I can do about that. I really thought the stats were what was presented to CDC and/or the Health Department -- not the name, too. Wow.

Diane

Thanbey --

You know - you are right. I did force my opinions on the Health worker and explained all three of my potential hits and I wanted her to record them. I believe she did ... but where it goes from there, who knows? She could just stop at the 1st one and right it off. Quite frankly, I don't know which of the 3 this disease came from ... so how does CDC? I don't believe that all Hep C comes from an illegal needle stick. That would mean that in every case, one person in that shared-needle group had the disease. Where did he or she get it from???????

Thanks for all your help and support!

Diane

when i found out in/99 that i have this, i had to sign a form from my doc allowing the health department of my condition,i had no problems at all with it.but was curiouse just the same and i was told that the doc had to report any cases"like mine" to the health department.
keep the faith, bless you...............mj