I'm a 48 year old woman, living in the mountains of N.W. Montana. I was diagnosed in April '06 after a routine annual exam. My liver enzymes were elevated so we tested for Hepatitis. I had just had a friend who had passed due to years of fighting the virus only 6 months prior, so I was already aware of HCV. My best friend and her husband had also tested positive for HCV, but she was unable to be genotyped and shows no viral load, so she must have spontaneously cleared.
Anyway, I digress. When I was diagnosed, it wiped me out. I was vocal with my friends about the virus and found I had other friends who had undergone treatment and there was one who had been diagnosed a few months prior to me and was undergoing treatment. Cancer had taken hold of him and treatment had been unsuccessful. I saw him when he was jaundiced and fighting accites which rocked me to my core and scared me more than anything. He subsequently passed about 1 month after I saw him. Another devastating blow.
I was surprised by how many people had it, but no one talked about it. The stigma is so strong, even when the public knowledge is minimal. People are so afraid of being judged for having an illness that may have been contracted by drug use, even if it was only one time or done years ago.
Back to me, I was genotyped as 4. That was another surprise since it is so rare in the U.S. I had used IV drugs in the 70s and had dabbled in snorting drugs into the early 80s. Along with the drug use was a sexually permissiveness that could have been a means of contracting it, but those didn't feel right.
I had been hit by a car in 1963, the day before my 2nd birthday and had massive internal injuries including a ruptured liver, which led to large blood transfusions.
Upon researching genotype 4 populations in this country I found there just happens to be one of the two main populations in Minnesota where my accident occurred. So, I'm pretty sure that's where I contracted this. Genotype 4 is slower progressing, but is treated here the same as 1a. It tends to be resistant to treatment. The research regarding genotype 4 is occurring in Egypt, where it is the prevalent genotype. (I have never been to Egypt or known anyone who has been there.)
I was on chronic pain management at the time I was diagnosed for back pain, taking opioids and muscle relaxers. My first GI wanted me to begin treatment right away, but I had a problem with the way he treated me as a person, so I sought another doctor. I found another one who thought I was doing quite well. If my accident had been my means of transmission, my body has fought this all of my life and faired pretty well. He informed me that if I did want to do treatment that it tended to be unsuccessful when opioids were used as pain meds. I weaned myself from my pain med addiction and am now free of them. That doctor turned out to not meet my expectations and now I'm on my third. I refuse to be marginalized or treated as less than worthy of the best care. I'm so fortunate to have a supportive husband and son along with adequate health insurance to cover my expenses.
I started reading as much as I could about HCV and various types of treatment. Having two friends pass due to this virus even after conventional treatment scared me, so I have opted for the time being to use herbal therapy.
I seem to be doing well on herbal therapy, at least as far as I can tell. My liver panels have all been in the normal range since I began and my viral load tests have all come back lower each year. The second year, it had dropped by half, to just under 2 million. I'm getting my yearly viral load test done again on Friday, which is always anxiety inducing. I just keep hoping this is still working for me. I'll be ready for my second biopsy next year unless this test indicates I need it sooner.
This has been a blessing in disguise. I have cleaned up my diet, quit drinking, smoking and taking pain meds. I exercise regularly and am attempting to lose the weight I've allowed to build up over the years, especially what I've gained since I quit smoking. I have gardened for years and eaten organically as much as possible. Since we live so rurally, I do all the cooking so I don't deal with fast food or restaurants much. We're fortunate to live in an amazingly healthy environment.
One of the things that bother me most is the thought that I have passed this virus on to other without ever knowing it. I realize it was not intentional, however if there was adequate public awareness of this then fewer people would inadvertently be infected. I was terrified I had passed this to my son at birth (I had a Cesarean Section and the presence of blood to a new born is a huge risk) He tested negative, thank God. My husband has not been tested, but that's his choice. We treat all blood spills, even what most people would think as nothing, as biohazard. Can't be too careful.
I am a member of Debbullan, Inc. Board of Directors and take every opportunity I can to spread information about this virus. I speak openly to everyone about my having it and how I may have gotten it. If I'm stigmatized by this, it's out of ignorance, and I aim to combat that. I’m a substitute teacher for a small Jr. High/ High school and most of the kids, a student body of about 300, know that I have HCV and how it's transmitted. With so much piercing and tattooing among today's youth they need to be informed.
So, there's my story thus far. I hope this is helpful to others. I'm always happy to answer questions about HCV, my experience with it, how I'm treating it, and coping.
