Hepatitis C Survivor  


The Dragon In Our Head

Written By:  Teri Gottlieb




You would think that once you've treated for Hepatitis C and cleared the virus, achieved SVR and are considered cured that you'd be done with it right? Makes sense. It would be nice but unfortunately, most of the time, it doesn't happen that way. For most of us, an unrealistic fear remains. That fear that "it's back". Be it an ache or a pain, a bout of fatigue or a case of the flu, our first thought is that our Hepatitis C is back. For as difficult as treating this virus can be, it seems that it's easier to get the virus out of our liver than it is to get it out of our head.

I don't think there is anyone who has treated for Hepatitis C that hasn't feared that viral load test. During treatment that test is run many times so there are quite a few opportunities for that anxiety to set in. Once we get that "undetectable" result the fear starts. We fear that the next one won't be. Case in point: I treated for my HCV in 2005 - 2006. My first viral load after treatment was started was done at 6 weeks. Normally it would have been done at the 8 week mark but I was in the hospital getting a blood transfusion and my doctor figured while I was there, might as well do it. After the transfusion, right before I was ready to leave, they drew my blood. That evening my doctor called me at home to tell me the great news that I was, in fact, already testing at undetectable levels. He hadn't expected this result this early in my treatment. I doubted the results. I was convinced that the reason my test came back undetectable was because the blood they took was the transfused blood. I had to have the next blood test at 12 weeks in before I could believe it. Of course, that test at 12 weeks showed the same result. I was undetectable and the treatment was working. Did I breathe a sigh of relief then? No. I feared that test every time.

A viral load test, also called a PCR, is run several times during the course of treatment and again 6 months after treatment is over. It is that test at the 6 month mark that determines if you have achieved SVR or Sustained Virologic Response, This is probably the most nerve wracking test for us. It also doesn't help that it's usually several days to a week before we get these results. That can be a week of sheer torture for many. For me, this test has been run yearly even though it doesn't need to be. Every year I sweat this test. This last time it was so bad that I have told my doctor that 6 years of this test being negative is enough for me! I am done torturing myself like that.

We tend to torture ourselves when it comes to our HCV status. Once we've cleared we need to realize that unless we get re-infected, this mess is gone. It's over and done with. Time to get on with life. BUT we still need to be careful not to get re-infected. Granted, many of the ways that a lot of us got infected no longer exist. Blood banks are screening thoroughly, dental practices are sterilizing their equipment, those air guns are no longer being used for vaccinations, but nail salons and tattoos and IV drug use are still a risk. If you don't put yourself in a position for reinfection you will be fine. You can stop worrying. Still, it's easier said than done.

So what can we do to get the dragon out of our head? I'm not sure that we can. The experience of being diagnosed with Hepatitis C and its treatment can be so traumatic that it leaves a scar that may stay with us forever. That may be a good thing. That may keep us safe. Maybe what we actually need is having that fear deep within us. That fear can keep us from ever getting reinfected. That fear can encourage us to tell others to get tested. That fear may be a good thing after all