I am using the pseudonym of Kyle Jacobs rather than my real name because of the stigma attached to having HCV. I found out about my HIV status 2004. It was very difficult at first to be open about it but public perception has changed drastically over the past decade. It is not the same for HCV however, and in part because of the lack of awareness about the virus.
I had no idea that I was “at risk” for contracting HCV. Everything I had read or heard up to the point of my diagnosis led me to believe that HCV was something that was not a concern for me. I had not had a blood transfusion before 1992. I was not a health care worker that could suffer a needle stick accident. I was not an injection drug user or cocaine user. I did not engage in traumatic sexual activities. I did not even know anyone that had HCV.
Things quickly changed for me in late November 2013. I started experiencing fatigue, dry and itchy eyes, vision distortions, mood swings, the inability to concentrate and focus while working on detailed projects, headaches, and mental “fog” that would come and go. I thought at the time that I could have contracted Syphilis based on a previous experience with that about five years before and scheduled up an appointment with my infectious disease doctor.
It was about the same time that I would have normally gone to see the doctor for my regular HIV checkup so he ran all of the usual blood tests as well as a Syphilis test. A few days later when the test results came back I was surprised when the Syphilis test came back indicating that I did not have a new infection. In fact, all of my labs looked great including undetectable HIV viral load and CD4 counts in the 900’s. There was one anomaly...my ALT and AST numbers were slightly elevated.
The doctor and I discussed the results including the elevated ALT/AST numbers. I was still thinking that Syphilis was a possibility because when I had contracted it five years before, it did cause me to have elevated ALT/AST numbers. The doctor asked about my drinking habits and I had enjoyed several glasses of wine the night before my blood tests. The doctor and I agreed that I would come back in a few weeks for some follow-up tests. I was to not drink anything alcoholic and was to avoid anything with acetaminophen and we would see how things were then.
I returned to the doctor on December 20 for another comprehensive metabolic panel and Syphilis test. When the results came back, still no indication of a new Syphilis infection but ALT and AST number were very high rather than slightly elevated. This was all happening around the holidays and I was traveling visiting family and friends so the doctor and I agreed that I would come back for additional blood tests on New Year’s Eve and would have an ultrasound of my liver on January 2, 2014 to see if he could determine what exactly was going on. I also stopped taking my Lipitor, as that was the only thing I was taking other than my once-a-day HIV pill.
January 2, 2014 arrived and I went to the hospital for my ultrasound. It was an easy procedure and the technician said that the doctor would have the results later in the day. I got a call around 5:30 PM from the doctor and I was kind of nervous and was thinking that the doctor was going to tell me that I would have to switch my HIV medicine because it was causing issues with my liver. That was not the case. He told me I had Hepatitis C. I was shocked!
Looking back at the time of my diagnosis, finding out that I had HCV was not as devastating to me personally as finding out that I had HIV. I did know enough about HCV at the time that I knew it was not something that I would immediately die from. I also knew that I had been tested for HCV in May 2011 and did not have it then. I was more focused on how could I have possibly been exposed to HCV.
Flash forward to today. I am getting ready to start treatment for my HCV. I was fortunate to have been diagnosed at a time when a number of new treatments were coming to market and tomorrow I will be starting a new single pill, once-a-day regime approved earlier in the month called Harvoni made by Gilead.