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...
I ditto everything that has been said so far. I do, however, have a practical issue for you to consider and that is your insurance. Tx is expensivie, so look also at how much of the costs will be covered by your insurance.
You are a lucky one to be a type 2. I was a 1B and had tough sides the first few wks, then they leveled out and it wasn't too bad for me. Did the whole 48 wks. You CAN do 24 wks. Would suggest if you decide to tx now, though, that you do have some support and help around the house/kids the first couple shots anyway to see how your body reacts. You may not have any reaction to the meds but it would be nice to know if you someone to call on if you need them.
Good luck in making your decision. We are all here for you.
You are a lucky one to be a type 2. I was a 1B and had tough sides the first few wks, then they leveled out and it wasn't too bad for me. Did the whole 48 wks. You CAN do 24 wks. Would suggest if you decide to tx now, though, that you do have some support and help around the house/kids the first couple shots anyway to see how your body reacts. You may not have any reaction to the meds but it would be nice to know if you someone to call on if you need them.
Good luck in making your decision. We are all here for you.
I'm also an older mom with a 4 yr old who is HIGH energy. On a regular basis I tend to loose my patience quickly with my headstrong son. Seeing another mom struggling with the same issues gives me hope doing treatment while parenting will be okay.
As soon, as I find out my VL, I will post my profile including email address in the event you'd like to correspond.
Thanks,
As soon, as I find out my VL, I will post my profile including email address in the event you'd like to correspond.
Thanks,
Hi,
I've been quite lucky. I had all the same fears as you (my daughter is a VERY spunky almost 4 yo, plus, I'm an "older" Mom (45). So far it has not been bad at all (except the 11 days when I was battling some kind of bacterial infection--probably from having a low wbc count). I do sometimes lose my patience more easily, but I have been surprised at how good I have been feeling. Best of luck! Keep me posted.
Lauren
I've been quite lucky. I had all the same fears as you (my daughter is a VERY spunky almost 4 yo, plus, I'm an "older" Mom (45). So far it has not been bad at all (except the 11 days when I was battling some kind of bacterial infection--probably from having a low wbc count). I do sometimes lose my patience more easily, but I have been surprised at how good I have been feeling. Best of luck! Keep me posted.
Lauren
amommy: I can totally relate to your situation. In the 90's, doctors thought I had cleared the virus. It wasn't until more senstive tests were developed that they realized I hadn't. I also struggled with the decision to treat. I have two small children and always told myself I would treat when they got older. Just as soon as I had made peace with that decision, an elevated liver enzyme or viral load test sent me into tizzy and I would lie awake at night thinking about the virus that was eating my liver. I finally decided to take the treatment plunge and will begin shortly for the following reasons:
a) It's never a good time to treat. Down the road I'll have new responsibilities. If I waited til my boys were in school, then there'd be homework, afterschool activities, etc. that I'd have to deal with while on treatment.
b) tired of being infectious. If I cut my hand, my boys don't get a bath that night. Although my kids are negative, I don't ever want to take the risk of infecting them down the road.
c) If I had the dreaded "C" word, there would be no question on whether I would seek treatment/chemo. So why is this different? If I don't take care of myself now, then who'll take care of my family down the road as this disease continues to impact my health.
d) If treatment is too unbearable, then I can always stop and my liver would have gotten a reprieve from this disease.
e) Tired of waiting for better treatment. Three years ago, I was told that better things were coming down the pike but that hasn't happened. I'd rather take a chance and treat with drugs that have been out on the market for a while vs. new drugs where the long term effects are unknown.
Given the success rate for your genotype, I would feel optimistic that in 6 months you can clear this thing.
rearfang: I'll be starting treatment soon and wonder how you are handling motherhood while on treatment? My concern is that I'll be too tired to get out of bed to feed, cloth my kids clean the house, etc. Have you had any of these issues? Do you have help (nanny/babysitter?) I'm also concerned about acting moody in front of my children. Have you had to deal with this? Any information would be greatly appreciated.
Thanks!
a) It's never a good time to treat. Down the road I'll have new responsibilities. If I waited til my boys were in school, then there'd be homework, afterschool activities, etc. that I'd have to deal with while on treatment.
b) tired of being infectious. If I cut my hand, my boys don't get a bath that night. Although my kids are negative, I don't ever want to take the risk of infecting them down the road.
c) If I had the dreaded "C" word, there would be no question on whether I would seek treatment/chemo. So why is this different? If I don't take care of myself now, then who'll take care of my family down the road as this disease continues to impact my health.
d) If treatment is too unbearable, then I can always stop and my liver would have gotten a reprieve from this disease.
e) Tired of waiting for better treatment. Three years ago, I was told that better things were coming down the pike but that hasn't happened. I'd rather take a chance and treat with drugs that have been out on the market for a while vs. new drugs where the long term effects are unknown.
Given the success rate for your genotype, I would feel optimistic that in 6 months you can clear this thing.
rearfang: I'll be starting treatment soon and wonder how you are handling motherhood while on treatment? My concern is that I'll be too tired to get out of bed to feed, cloth my kids clean the house, etc. Have you had any of these issues? Do you have help (nanny/babysitter?) I'm also concerned about acting moody in front of my children. Have you had to deal with this? Any information would be greatly appreciated.
Thanks!
Like revenire says, get a biopsy to find out how much liver damage you have. It's the gold standard An alterative is to get the Firbrosure blood test now. If the test shows no damage, you're probably OK. If it shows moderate or severe damage, then you'd want a biopsy.
If it turns out you have little or no damage, you can treat or wait. Treatment for genotypes 2's is shorter and has a very high (80%) success rate. If you decide not to treat, we're hoping even better drugs are no more than 3-5 years away.
If it turns out you have moderate to severe damage, then by all means treat now. Studies show that liver damage can be reversed once you clear the virus.
If it turns out you have little or no damage, you can treat or wait. Treatment for genotypes 2's is shorter and has a very high (80%) success rate. If you decide not to treat, we're hoping even better drugs are no more than 3-5 years away.
If it turns out you have moderate to severe damage, then by all means treat now. Studies show that liver damage can be reversed once you clear the virus.
I agree that the biopsy would be most helpful in your decision making. Given the circumstances you are not a coward nor are you indecisive. It's usually a tough call what to do and the biopsy will give very useful info most likely. One step at a time. frank
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