You guys are great and I'm so happy that I have come hear to this forum! I am actually seeing a hepatologist, everything is just moving so quick for me!! I will talk to the doctor about the biopsy when I go on October 6th!! Thanks, and all of you are in my prayers. Its nice to know I have people I can actually come and talk to!!
Heh, didn't finish my sentence above, phone rang. I was saying that I wasn't HAPPY to find out I had Hep C, but I was VERY HAPPY to find out before I had any major problems. Now I can DO SOMETHING about it. If I didn't know... well, the story might have turned out different down the road.
Robert
Hi Missy,
Lots of good advice here. I don't have a lot to add in that regard... but I can tell you that when I first found out I had this, I had so much anxiety and fear that I developed nosebleeds for a week.
Within a few days, after I learned that I wasn't going to die tommorrow from it, I began to absorb all the knowledge I could about it. Soon, my anxiety level dropped to normal. I can't say I was HAPPY about having Hep C, but it no longer controls my every waking thought. I can tell you that I was VERY HAPPY th
This too shall pass, as they say.
You will walk the same road. But just around the corner is a place where you will come to grips with it. You'll understand that hundreds of thousands, maybe millions, have traveled this same road and come out OK on the other side.
This disease CAN be beaten. Learn all you can. Remember, there are no silly questions here.
Robert
I agree with all of the above. My viral load was over 6 mil when I first started tx and my hepatologist said it was about average, and by the time I'd been on tx for a month it was down to 2,000 so.... like Bill says, it is used to see how well the meds are working.
You do NOT want to go through treatment with a doctor who isn't a specialist!!!!!!!!!!! Obviously yours isn't. There are so many possible bad side effects from the meds that you have to have someone who is up to date on the latest findings.
You have time to find a good doctor. This is a slow progressing disease but it is a long road to get rid of it, and you want to make sure you have the right support going into it.
Diane
Yes insist. If you do not have vast amount of liver damage that has progressed you would have time to wait until next year and see if the new (better odds, less time on treatment meds) meds come out and try then if you even need to.
HCV usually progresses very slowly. A doctor who would tell you that your viral load is high or dangerous or something doesn't sound like they know what exactly is going on.
Is this a general practitioner or a hep specialist? My on PCP doc told me I had no fibrosis (I was already stage 3 so I dont know why she didn't understand that) and all sort of incorrect information. Most of them don't know anything about HCV as it is rather a specialized field and you want someone who is up to date and current on the new information and studies - not someone who is reading out of an old text book!
I agree with copyman INSIST on a biopsy or find another Dr. You cant make a correct desion on treatment without knowing the extent of damage if any.
you have to find out what stage of fibrosis you are to make a decision regarding treatment. if minimal fibrosis then waiting for the new drugs next year is best option. insist on a biopsy and if this doctor will not order it then you should find another doctor.
This is typically a slow moving disease and no need to jump into treatment.
best of luck
Thanks! But the only thing they have told me is that they want me to have the treatments, nothing about a biobsy.. My next appt is October 6th, I'm writing questions down to ask the doctor so that will be my first one. Again thanks, learning as I go!
Hi there,
Sorry to hear of your diagnosis. Genotype 1 is a rather difficult strain of HCV to manage, as you’ve probably been told by now. Your viral load is actually rather average, and isn’t really important until treatment commences; at that time, it is used to gauge your response to the treatment drugs. It doesn’t necessarily correlate with disease progression, by the way.
Disease progression is best determined by liver biopsy; has that procedure been discussed with you yet? Depending on the degree of scarring, or fibrosis that’s accumulated we can judge how urgent treatment is; if you’re biopsy results indicate minimal fibrosis, it might be wise to postpone treatment in favor of more efficacious modalities in the future.
Welcome to the discussion group, Missy—
Bill
Hi Missy, your viral load is not real bad that can go up over 25 million. What you need is a liver biopsy to see the extent of the damage it takes decades normally. What you need is a Hepatoligist {liver specialist}. Do you know how long you might of had HCV?I personally wouldn't do any treatment until I had a biopsy then decide. Next year there supposed to release a couple new drugs that make your odds a hell of a lot better of clearing the virus with shortened treatment.