Aa
Educating friends about risks
This weekend, a friend revealed that he used heroin intravenously when he was a teenager. I immediately started talking about getting tested for HCV. He had some very naive ideas and blurted out, "I'm not a drug addict." I told him that I didn't believe that and even if he had only used heroin intraveneously once that he should be tested. He said that as much as he drinks, he'd know if he had anything by now. I told him no, HCV is a silent killer. I started talking to him about the stages of cirrosis and the liver. I also suggested that he have his liver enzymes checked. He freaked out and left the room. I think he is mad at me now.
My question is this: was I wrong to discuss this openly? should I apologize? I'm not really sure what to do. He knows I have HCV and that I have been on treatment. I don't understand why he was so defensive about the subject. I've never had anybody act this way in a discussion about health issues.
One of my best friends is engaged to this man and I don't know what to do. This guy is also a good friend of my husbands. I feel like I really messed up but I know in my heart that saying those things was the right thing to do.
My question is this: was I wrong to discuss this openly? should I apologize? I'm not really sure what to do. He knows I have HCV and that I have been on treatment. I don't understand why he was so defensive about the subject. I've never had anybody act this way in a discussion about health issues.
One of my best friends is engaged to this man and I don't know what to do. This guy is also a good friend of my husbands. I feel like I really messed up but I know in my heart that saying those things was the right thing to do.
All of you please take a good hard look at pegintron side effects, if you start getting shortness of breath there is a real threat of developing interstitial pnuemonitis which is a nasty bit of buisness, I tried telling my doctor after 2nd dose and by the time he came around to something was wrong(10th dose)I had developed full blown disqualmitive interstitial pnuemonitis. It is deadly and make your life pretty miserable until the end. All I can say as a warning to treatment is if you develope shortness of breath and weakness, yell, scream do what you have to,get a ct scan and have it checked out because it is very treatable in early stages.
This is a good thread
What you have done is plant a seed. He can take it from there. He may continue in denial or he may, at some point come to terms with what you said. There was nothing incriminating or hostile about what you said - they were just facts.
It all falls back to education and trying to take the stigma out of hepatitis C. The Chinese have a term called "saving face." You may know someone is dead wrong, but as you speak to them you must leave an "out." For example, if you know somone who used IV drugs, you could suggest that C also can come from dental equipment. The odds of hep C coming from the dentist or the pedicure are small, but it does allow one to save face.
Most people are unaware that testing for hep C is separate and will not be done in the course of an ordinary physical. When I first found out, I told an old friend of mine that she needed to be tested (we did IV drugs together 35 years ago). She told me she had to have physicals for work and it had never came up. When I began treatment (12 years later) I wrote her a letter. I have never heard back from her, but my conscience is clean.
I like aiuta's suggestion too
What you have done is plant a seed. He can take it from there. He may continue in denial or he may, at some point come to terms with what you said. There was nothing incriminating or hostile about what you said - they were just facts.
It all falls back to education and trying to take the stigma out of hepatitis C. The Chinese have a term called "saving face." You may know someone is dead wrong, but as you speak to them you must leave an "out." For example, if you know somone who used IV drugs, you could suggest that C also can come from dental equipment. The odds of hep C coming from the dentist or the pedicure are small, but it does allow one to save face.
Most people are unaware that testing for hep C is separate and will not be done in the course of an ordinary physical. When I first found out, I told an old friend of mine that she needed to be tested (we did IV drugs together 35 years ago). She told me she had to have physicals for work and it had never came up. When I began treatment (12 years later) I wrote her a letter. I have never heard back from her, but my conscience is clean.
I like aiuta's suggestion too
Thanks everybody. I'm feeling a bit better about the situation after reading the comments here. I do plan to apologize to him for offending him and drop it after that. My husband said I am to pushy so I will try to work on that.
I think the part of the convo that ticked the guy off was when he said he drinks a lot and I agreed. That was when he left the room. I guess I am to honest for my own good.
Dragonslayer, I went last week for my first post treatment bloodwork. I go again on Thursday so I will find out the results then and I'll also be giving more blood. They are checking me pretty often post treatment and I pray everyday that the NM283 worked. The nurse said she has 9 patients left in the study I'm in. All have finished the meds but one. 1 man has relapsesd (he didn't take his meds as directed) and the others are still clear. So far, so good.
I am so sure of the riba/nm283/peg combo will be very effective. How could it not be? I've been trying to condition myself to think positively. Can ya tell? LOL
Thanks again, everybody. I really appreciate all of your input.
I think the part of the convo that ticked the guy off was when he said he drinks a lot and I agreed. That was when he left the room. I guess I am to honest for my own good.
Dragonslayer, I went last week for my first post treatment bloodwork. I go again on Thursday so I will find out the results then and I'll also be giving more blood. They are checking me pretty often post treatment and I pray everyday that the NM283 worked. The nurse said she has 9 patients left in the study I'm in. All have finished the meds but one. 1 man has relapsesd (he didn't take his meds as directed) and the others are still clear. So far, so good.
I am so sure of the riba/nm283/peg combo will be very effective. How could it not be? I've been trying to condition myself to think positively. Can ya tell? LOL
Thanks again, everybody. I really appreciate all of your input.
Said: he should be tested. He said that as much as he drinks, he'd know if he had anything by now.
You know I always used that logic regarding myself so I sort of understand it. It's a way of using total denial but tricking yourself into thinking you are fine because you're = what = alive?
Anyway by the time I did get the courage to have the test I was stage 3.
You need to remind your friend it's not that HE did it once....it's that he needs to multiply it by all of the people that have done it and mixed blood before him that matters on that needle you know?
Like that good old when you have sex with somebody you in essence are also having sex with everybody they ever had before you.....
A disease doesn't care if you think you're not an addict - it will find it's way in if it has the most simple of chances.
And with all your friends drinking - he could very well have advanced liver damage if he does have HCV.
Unfortunately though until somebody is ready - they won't listen to anything you say. I sure hope he does eventually.
You know I always used that logic regarding myself so I sort of understand it. It's a way of using total denial but tricking yourself into thinking you are fine because you're = what = alive?
Anyway by the time I did get the courage to have the test I was stage 3.
You need to remind your friend it's not that HE did it once....it's that he needs to multiply it by all of the people that have done it and mixed blood before him that matters on that needle you know?
Like that good old when you have sex with somebody you in essence are also having sex with everybody they ever had before you.....
A disease doesn't care if you think you're not an addict - it will find it's way in if it has the most simple of chances.
And with all your friends drinking - he could very well have advanced liver damage if he does have HCV.
Unfortunately though until somebody is ready - they won't listen to anything you say. I sure hope he does eventually.
Auita
Very well said
ALady
I can understand your feeling bad about how he received your advice. I agree with wome of the previous posts, because of the ignorance concerning this disease and the social stigma associated with it, some people don't react well to hearing about it. I remember when I found out I was mortified. Especially when all the first information i read was "Silent Killer" and stuff like that. Obvioulsy since i have educated myself more and have a better understanding of what it is and how it effects us. You did the right thing.
I hope you are feeling well these days. I assume you are still negative from your NM283 treatment. I am still awaiting my appointment with my doctor about the upcoming trial. The appointment for trial that I was supposed to go to on Oct. 30th turned out to be for something else. Slight miscommunication between the nurse, the doctor and myself. I am now going to see them November 20th. for the correct trial with Nm283, peg, and riba. Keep me posted on how you are feeling and doing.
Very well said
ALady
I can understand your feeling bad about how he received your advice. I agree with wome of the previous posts, because of the ignorance concerning this disease and the social stigma associated with it, some people don't react well to hearing about it. I remember when I found out I was mortified. Especially when all the first information i read was "Silent Killer" and stuff like that. Obvioulsy since i have educated myself more and have a better understanding of what it is and how it effects us. You did the right thing.
I hope you are feeling well these days. I assume you are still negative from your NM283 treatment. I am still awaiting my appointment with my doctor about the upcoming trial. The appointment for trial that I was supposed to go to on Oct. 30th turned out to be for something else. Slight miscommunication between the nurse, the doctor and myself. I am now going to see them November 20th. for the correct trial with Nm283, peg, and riba. Keep me posted on how you are feeling and doing.
I just want to commend your courage and honesty. You did a brave, adult and KIND thing with this man. Afterall, what's more important -- his pride or his life? Cutting through someone's denial is always difficult.
I agree with Foreseegood that saying it just once is probably best -- for both of your sakes. It's been suggested to me if I say things more than once, I am getting into control, which doesn't make the other person (or me) feel good. I hope YOU give yourself a HUGE pat on the back for what you did -- especially since it sounds like this man won't be doing so. His loss, but you still have planted a seed, and done your part to spread Hep C awareness, which sounds somewhat important to you.
As for the fact that he forms a part of your regular social life -- being close with your husband and friend -- I personally (opinion only) might say something like, "XXXX, I was thinking about our talk the other day and I really hope I didn't offend you. I promise you that was not my intention, even if it seemed that way to you. The truth is that this illness has brought a lot of pain and suffering in my life, and, as a result, I have a passion for wanting to prevent others, especially people I care about, from having to go through the same pain. So, I apologize if I seemed too insistent. It's really more about me than you. And, if it makes you feel better, I won't bring it up like that anymore." This may ease the tension a bit, especially since he walked out of the room on you and will be a regular part of your life. It's also TRUE and, despite how he reacts, YOU HAVE ALREADY PLANTED A SEED that sounds important to him and you.
Congratulations, Alady. You are a brave and courageous woman.
I admire and respect what you've done.
All my best,
Aiuta
I agree with Foreseegood that saying it just once is probably best -- for both of your sakes. It's been suggested to me if I say things more than once, I am getting into control, which doesn't make the other person (or me) feel good. I hope YOU give yourself a HUGE pat on the back for what you did -- especially since it sounds like this man won't be doing so. His loss, but you still have planted a seed, and done your part to spread Hep C awareness, which sounds somewhat important to you.
As for the fact that he forms a part of your regular social life -- being close with your husband and friend -- I personally (opinion only) might say something like, "XXXX, I was thinking about our talk the other day and I really hope I didn't offend you. I promise you that was not my intention, even if it seemed that way to you. The truth is that this illness has brought a lot of pain and suffering in my life, and, as a result, I have a passion for wanting to prevent others, especially people I care about, from having to go through the same pain. So, I apologize if I seemed too insistent. It's really more about me than you. And, if it makes you feel better, I won't bring it up like that anymore." This may ease the tension a bit, especially since he walked out of the room on you and will be a regular part of your life. It's also TRUE and, despite how he reacts, YOU HAVE ALREADY PLANTED A SEED that sounds important to him and you.
Congratulations, Alady. You are a brave and courageous woman.
I admire and respect what you've done.
All my best,
Aiuta
My bf found out he had HBV a few years ago when he went to donate blood; he has no idea how he contracted it - he thinks its from a razor he lent to a friend at a high school camp. He's still coming to terms with it - its pretty daunting to be faced with the prospect when you have a hep shadow lurking in the background i guess..
but I've been trying to find out as much as i can about it & to be supportive in order to remove the stigma and preconceptions attached to it, so we can talk openly about it.
but I've been trying to find out as much as i can about it & to be supportive in order to remove the stigma and preconceptions attached to it, so we can talk openly about it.
My wife contracted HCV some time in the past apparently from a blood transfusion because I have no doubt that she never used IV drugs and would be shocked to my very core to learn she'd gotten it from a sexual partner other than myself (I'm clean). She got the blood about 1982 following a gall bladder removal which puts the onset just about the right time frame. Now when people ask about her disease I blurt out the whole thing: "She has hepatic encephalopathy which is a side-effect of cirrhosis which is a side-effect of Hepatitis C. She probably got it from a blood transfusion in 1982 and the cirrhosis isn't from drinking!" Then, if the person is still receptive I give them all the information in capsule form of how HCV is transmitted and how a lot of people have it and are not aware of it. I'm looking for a forum or support group for myself now if anyone could steer me in that direction. Dealing with the hepatic encehpalopathy has just about pushed me 'round the bend and I really need some help soring it all out.
i find talking about a therd person takes down walls it works with my kids evan if it takes a feww days our months to sink in
this is the place for you to be. Lots of wonderful, loving people here to just talk with or ask questions or just vent. You are in such a hard place, my respects to you, learn to talk about it here. These folks are pretty wonderful in my book.
Willow
Willow
hi Tulsa, just boiling in this heat over here which is more then weird in November, hope you feel better really soon...
I agree with the misinformation out there. I was watching something on E! about the 50 biggest confessions and of course Pam Anderson was one of them but what pissed me off was she said that she probably got it from a tattoo and the people commenting on it were like "yeah right, you can only get it thru drugs or sex..." I just got so mad because of all the kids that watch stuff like that or adults too who truly believe that and don't think they are at risk. And every time I try to warn someone about tattoo's or intranasal drug use they won't believe it can happen to them. Gawd I wish we really could get a big name spokesperson out there to spread the word on how many people could be infected and don't know or refuse to even get the lil ole blood test.
Our paths crossed I just wanted to say hi and I agree with all that you said. Take care.. Debi
I tell people who arent't even in the high risk group as I wasn't - don't know how I got it. Just learned from a blood donation. But I have been symptomatic for 2 years just didn't know what was wrong with me. Still might not be sick from HEP C since the results aren't in yet but it sure makes since. Went from totally healthy person to extremely sick person almost overnite.
My boss warned me about who I tell but my response to her was that it might come back to bite me in the behind but I felt an obligation to be an advocate and encourage everyone to ask to be tested when they get their annual physicals. Too many people walking around not knowing they have it, maybe infecting others, and placing their own health at risk.
My boss warned me about who I tell but my response to her was that it might come back to bite me in the behind but I felt an obligation to be an advocate and encourage everyone to ask to be tested when they get their annual physicals. Too many people walking around not knowing they have it, maybe infecting others, and placing their own health at risk.
Yes I know exactly what you mean. People get so upset when you mention that they might need to get tested. I think it might be out of fear and denial. I know we all thought at one time we couldn't have it either. I had been clean 20 years. It never entered my mind I should be tested even when my sister got DX 10yrs ago. I never dreamed I had it. I felt so sorry for her and thought she might die. I was the one that had cirrhosis not her.
I just think we should keep educating people on the subject and hope more people will get tested before it is too late. That is all we can do. And hope that they take the tip and get tested. Hope ya'll are doing fine. I'm on week 11 now. Still hanging in. Seems this week I am more tired than usual. And I have a headache that I never had before, I think it is dehydration. I just am too tired to get up and get a drink. Take care, Hugs Debi
I just think we should keep educating people on the subject and hope more people will get tested before it is too late. That is all we can do. And hope that they take the tip and get tested. Hope ya'll are doing fine. I'm on week 11 now. Still hanging in. Seems this week I am more tired than usual. And I have a headache that I never had before, I think it is dehydration. I just am too tired to get up and get a drink. Take care, Hugs Debi
agree with Kalio, not much we can do about somebody else's denial, all we can do is tell people, maybe "once," what is going on, then it's up to them to either act like grown-ups or not...unfortunately, there are so many "adult children" out there, it's not even funny...child like enthusiasm or imagination and wonder I like...this type of immaturity isn't so great though, however prevalent it is...
Sounds like he is in denial. I think you did the right thing, even if he reacted poorly, hopefully he heard you and will get checked out. I mentioned to someone I know that intranasal cocaine use in the past is reason to be tested and he got all miffed saying "well, it was so long ago, I'd be sick by now"
sort of along the lines of your friend's thinking. It was pretty uncomfortable.
There is so much stigma and misinformation around this illness, all we can do is speak up and hope they listen and get tested.
I think you are brave to have spoken up.
sort of along the lines of your friend's thinking. It was pretty uncomfortable.
There is so much stigma and misinformation around this illness, all we can do is speak up and hope they listen and get tested.
I think you are brave to have spoken up.
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