Aa
I'm just plain scared...
Well, first off, I apologize for taking up a thread with this vent. I just don't know how to process all I am thinking about and you guys are all so insightful and helpful. Please feel free to post other topics on this thread...
I don't even know where to begin. I am scared. I have shared little parts of my story, but to recap, I am hep c positive. I found out I had the antibodies in 1995, and thought that I just had the antibodies. Eventually it came to light in 2001 when I asked to be retested that I in fact have the active virus.
Still, at that time, I was told it really is up to me whether to treat or not, my liver enzymes have always been normal etc. My hubby and I decided to wait it out, start our family (given the less than 5% chance of it being passed on to a baby) and go from there. Well, sadly, it was passed on to my darling dear daughter, but thus far she seems fine. I could post a whole other post about my worries for her, but this post is going to be about me.
My GI told me basically that I only need to come back when I am ready to treat. I have not been back. I am too scared. I feel like I have increasing sxs, and I am so afraid of what I am going to find out. How is this logical? I cannot explain this. I am afraid to treat, I am afraid not to treat. I am petrified of the long term effects of the treatment, and just as petrified of taking a chance with this disease. Every ache and pain, I feel like OH NO, that must be my liver getting worse. All these symptoms, the RA type stuff, the GI issues, I feel like I have all of them...
I don't even know where to begin. I am scared. I have shared little parts of my story, but to recap, I am hep c positive. I found out I had the antibodies in 1995, and thought that I just had the antibodies. Eventually it came to light in 2001 when I asked to be retested that I in fact have the active virus.
Still, at that time, I was told it really is up to me whether to treat or not, my liver enzymes have always been normal etc. My hubby and I decided to wait it out, start our family (given the less than 5% chance of it being passed on to a baby) and go from there. Well, sadly, it was passed on to my darling dear daughter, but thus far she seems fine. I could post a whole other post about my worries for her, but this post is going to be about me.
My GI told me basically that I only need to come back when I am ready to treat. I have not been back. I am too scared. I feel like I have increasing sxs, and I am so afraid of what I am going to find out. How is this logical? I cannot explain this. I am afraid to treat, I am afraid not to treat. I am petrified of the long term effects of the treatment, and just as petrified of taking a chance with this disease. Every ache and pain, I feel like OH NO, that must be my liver getting worse. All these symptoms, the RA type stuff, the GI issues, I feel like I have all of them...
One thing I don't believe anyone addressed is your comment that you want to have more children. I would treat before I did that.
I empathize with your anxiety over treatment. The fear mostly comes from not having enough info to make a good decision. Once you have your biopsy results, it will be easier to decide. I agree with hepCinLA with the notion that "it is never a good time to treat". In the end, you just have to do it and not wait for things to be convenient. If you have insurance that will pay it and have stage 2 or more liver damage, I would proceed with treatment. In fact, if I wanted to get pregnant again, I would treat no matter what stage my liver was.
I am a geno 2 vl 1.5 million stage 2 liver damage. I have taken my next-to-last shot. I have been clear of the virus since week 4, but have another PCR test in a week or two. Treatment hasn't been fun, but not the worst time of my life either. I've followed excellent advice and bolstered my courage here and am very happy with my choice to treat. We geno 2's are very lucky that we only have to treat 24 weeks. You can do it. Make sure you have a good dr before you begin treatment with him. If your anxiety is getting the best of you, get your dr to prescribe an AD before starting treatment. I have been taking Lexapro while on treatment, and it's been a huge help. Stay busy and the time will pass more quickly.
Laika
I empathize with your anxiety over treatment. The fear mostly comes from not having enough info to make a good decision. Once you have your biopsy results, it will be easier to decide. I agree with hepCinLA with the notion that "it is never a good time to treat". In the end, you just have to do it and not wait for things to be convenient. If you have insurance that will pay it and have stage 2 or more liver damage, I would proceed with treatment. In fact, if I wanted to get pregnant again, I would treat no matter what stage my liver was.
I am a geno 2 vl 1.5 million stage 2 liver damage. I have taken my next-to-last shot. I have been clear of the virus since week 4, but have another PCR test in a week or two. Treatment hasn't been fun, but not the worst time of my life either. I've followed excellent advice and bolstered my courage here and am very happy with my choice to treat. We geno 2's are very lucky that we only have to treat 24 weeks. You can do it. Make sure you have a good dr before you begin treatment with him. If your anxiety is getting the best of you, get your dr to prescribe an AD before starting treatment. I have been taking Lexapro while on treatment, and it's been a huge help. Stay busy and the time will pass more quickly.
Laika
Sorry to hear about the stigma part of this disease. I know how you feel though cause I have been treated funny too, only rarely by strangers. My own family give me the feeling that I have something they can catch if they should get too close. Instead of learning about this they just THINK they have all the answers. Things being said like,"you just wait till your finished with the meds, you will finally have your health back. It doesn't seem to matter that I have been on disability for about 5 years now and that was before I even found out I had hepc. People need to stop thinking they have all the answers and that they know what you are going through because unless they have this, they don't have a clue. I hope things get better for you and that the stares and awful treatment you have experianced stops...it just isn't right.
I am scared too, sometimes I just cry for no reason. I am 1a with a HUGE VL of 62 million...even tho they say that doesn't matter, it still scares me. I hate the thought that this whole thing is MY problem and nobody can know what I feel and how it effects me but they all have plenty of advice and suggestions or they will say 'oh, it's curable' or 'it's not a death sentence'. Well, no not necessarily but it might be and who knows? I have not started tx yet because I am waiting for the results of my upper Endo bx which could make a difference in what happens...just what I need, something else wrong with me...So yes, I think we are ALL scared here and the only thing we can do is stick together and try to learn as much as we can. To be honest, I think we all know more about this thing than some doctors! Thank all of you for all your good advice!
Cin
Cin
I think the news overwhelms us all, but before I would make any decisions I would meet with a hepatoligist. Most GP's/family physicians don't know a lot about the disease and or benefits of treatment.
I first tested positive in 1989. I probably contracted the virus in the 70's and I had a 2 year old daughter(who at 18 still has not been tested.) My doctor told me not to worry--I wasn't symptomatic. Every few years during a physical I would ask my doctor about the Hep C and she would always say my liver function was normal not to worry. Meanwhile I was gradually (but dramatically) losing energy and picking up very achey joints. My doc kept writing it off to depression, stress and aging. When I finally had an elevated enzyme level she referred me to a Hepatoligist whose very first question was: "You've known you had this virus since 1989, why are you just arriving at my office in 2005?" While he was very professional you could tell that he was really pissed with my primary. Later, after I had the genotyping and the viral load tests I asked my primary what my genotype was and she said: C--you have Hep C. So there. And I'm really not indicting my doc I like her, they just don't know much about the disease.
Anyway, I went the treatment route and so far (4 weeks) sx have been minimal. I have a very busy full-time job and I coach swimming a couple of nights a week on top of that and I've been able to maintain the schedule with some minor modifications for naps. But--as my husband says--I was so sick to begin with that I couldn't be more fatigued, brain foggy and achey then I was pre-treatment.
All of which boils down to talk to someone who knows what they are talking about before you make your decisions. Your genotype has a faster treatment time and a much higher success rate then mine(1a) I think if I were you I would probably treat, but we each must choose our own paths on this journey. Trust me it's not the end of the world. My family, my co-workers and my friends have all been wonderful--there are millions of other people with this virus and we have to learn to be open and assertive about it.
Good Luck!
I first tested positive in 1989. I probably contracted the virus in the 70's and I had a 2 year old daughter(who at 18 still has not been tested.) My doctor told me not to worry--I wasn't symptomatic. Every few years during a physical I would ask my doctor about the Hep C and she would always say my liver function was normal not to worry. Meanwhile I was gradually (but dramatically) losing energy and picking up very achey joints. My doc kept writing it off to depression, stress and aging. When I finally had an elevated enzyme level she referred me to a Hepatoligist whose very first question was: "You've known you had this virus since 1989, why are you just arriving at my office in 2005?" While he was very professional you could tell that he was really pissed with my primary. Later, after I had the genotyping and the viral load tests I asked my primary what my genotype was and she said: C--you have Hep C. So there. And I'm really not indicting my doc I like her, they just don't know much about the disease.
Anyway, I went the treatment route and so far (4 weeks) sx have been minimal. I have a very busy full-time job and I coach swimming a couple of nights a week on top of that and I've been able to maintain the schedule with some minor modifications for naps. But--as my husband says--I was so sick to begin with that I couldn't be more fatigued, brain foggy and achey then I was pre-treatment.
All of which boils down to talk to someone who knows what they are talking about before you make your decisions. Your genotype has a faster treatment time and a much higher success rate then mine(1a) I think if I were you I would probably treat, but we each must choose our own paths on this journey. Trust me it's not the end of the world. My family, my co-workers and my friends have all been wonderful--there are millions of other people with this virus and we have to learn to be open and assertive about it.
Good Luck!
First of all Thank You. It's funny, but some of my physical sxs immediately started to feel better after getting that off my chest. It really helps to know there are people here in the same boat.
Puffins, I completely know what you mean about the stigma attached to this disease. I have told VERY few people, just one or two friends. We had a "playdate" with one of these friends, and she then called me later that day to see if her child was in danger of contracting the disease from mine. While I totally understood her concern, it just was a TERRIBLE HORRIBLE feeling to go through dealing with that. I felt so ostracized and sad that this is what I will face more and more should I choose to tell more people....
Anyway, I hope to be a more active poster here. I always feel bad using up threads so I don't post much! lol Have any of you ever created a chatroom just for this board, like say on MSN or something? It would be very cool to "talk" with some of you in real time.
Puffins, I completely know what you mean about the stigma attached to this disease. I have told VERY few people, just one or two friends. We had a "playdate" with one of these friends, and she then called me later that day to see if her child was in danger of contracting the disease from mine. While I totally understood her concern, it just was a TERRIBLE HORRIBLE feeling to go through dealing with that. I felt so ostracized and sad that this is what I will face more and more should I choose to tell more people....
Anyway, I hope to be a more active poster here. I always feel bad using up threads so I don't post much! lol Have any of you ever created a chatroom just for this board, like say on MSN or something? It would be very cool to "talk" with some of you in real time.
I can so much relate to your fears, I also am experiencing the same feelings, having two kids not knowing if they are infected with this disease. Just today I went to have the blood test done to find out what type and VL I have. I feel like my life stopped. The only thing that keeps me going is reading all the posts and knowing that I am not the only one and that there might be hope. Unfortunately I have already experienced stigma associated with this disease and honestly need help on how to handle it (i.e. doctor's PA making comments about "immigrants bringing this over here"(I told her off on that one) , stares or no eye contact while handling my paperwork at the blood lab.)
I know I'm just blabbing but please endulge me.
Puffins
I know I'm just blabbing but please endulge me.
Puffins
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