Diagnosed with Hep B in 1998; Hep C in 2014
I am a gay male who was diagnosed with HIV in 2004. I was diagnosed with hepatitis C in January 2014 after noticing that my ALT and AST levels were above the normal range. I had tested negative for hep C in May 2011, so the infection was relatively recent.
I am using a pseudonym rather than my real name because of the stigma attached to having hep C. When I found out about my HIV status in 2004, at first it was difficult to be open about it. However, public perception has changed drastically over the past decade. It is not the same for hep C, partly because of the lack of awareness about the virus.
I had no idea that I was at risk for contracting hep C. Everything I had read or heard prior to my diagnosis led me to believe that hep C was not something I needed to be concerned about. I didn’t receive a blood transfusion before 1992. I was not a health care worker at risk of a needle-stick accident. I was not an injection drug or cocaine user. I did not engage in traumatic sexual activities. I did not even know anyone who had hep C.
Things quickly changed for me in late November 2013. I started experiencing fatigue, dry and itchy eyes, vision distortions, headaches and mood swings. I was unable to focus while working on detailed projects, and mental “fog” would come and go. I thought at the time that I could have contracted syphilis, based on an experience with that about five years before, so I scheduled an appointment with my infectious disease doctor.
It was when 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 indicated that I did not have a new infection. In fact, all of my labs looked great, including an undetectable HIV viral load and CD4 counts in the 900s. There was one anomaly—my ALT and AST (liver enzymes) levels were slightly elevated.
The doctor and I discussed the results. 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 liver enzymes. The doctor asked about my drinking habits. 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 abstain from alcohol and anything with acetaminophen in it. We would see how things were then.
I returned to the doctor on December 20 for another comprehensive metabolic panel and syphilis test. Still no indication of a new syphilis infection, but the ALT and AST numbers were very high rather than slightly elevated. This was all happening around the holidays and I was visiting family and friends. 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 was going on. I also stopped taking Lipitor, which was the only medication I was taking other than my daily HIV pill.
January 2 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 p.m. from the doctor. I was nervous, thinking that he 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!
Finding out that I had hep C was not as devastating as finding out that I had HIV, but it was still hard to deal with. I knew enough about hep C that it was not something that I would immediately die from. I also knew that I couldn’t have had it for very long since I had tested negative for hep C in 2011. I was more focused on how I had been exposed to it.
Fortunately, I had several close friends who I could turn to. Even with the support that I had, hep C is not a topic of discussion that is comfortable to have even with men who are also HIV positive. Tremendous stigma about hep C exists both in gay and straight communities. Information is very limited on sexual transmission of hep C among gay men, and more attention should be placed on the subject to raise awareness.
I was fortunate to have been diagnosed at a time when a number of new treatments were coming to market, and my doctor prescribed Harvoni. In October 2014, I started hep C treatment. I took a pill every day, and the eight-week treatment was fairly easy overall. Fatigue was problematic, but I made it through it and took my last pill on Christmas Day 2014. I am officially cured.
I can say today that I really do feel like a new person. My energy levels have returned to what I consider normal, and the fogginess has gone away. My ALT and AST have also normalized. What’s next? Staying free of hep C until there is an effective vaccine. According to my infectious disease doctor, the reinfection rates in the gay male population may be as high as 20 percent. I do not want to relive this hep C experience.
To read Kyle’s blog about his hepatitis C treatment experiences, click here.
What three adjectives best describe you?
Complex, fortunate, upbeat
What is your greatest achievement?
My college education. Shortly after my HIV diagnosis in 2004, I went back to school and completed my bachelor’s and master’s degrees, and nearly finished with doctorate. Knowledge is power.
What is your greatest regret?
No regrets. I am fortunately to be where I am and proud of what I have accomplished.
What keeps you up at night?
Stupid little things that I cannot change that will make no difference in the end. I need to learn to not stress about the little things.
If you could change one thing about living with viral hepatitis, what would it be?
No one should be living with viral hepatitis. Everyone should have access to treatment and a preventive vaccine.
What is the best advice you ever received?
Learn to be patient.
What person in the viral hepatitis community do you most admire?
Lucinda Porter. What a brave woman and blogger who has helped so many people face the disease.
What drives you to do what you do?
A positive attitude
What is your motto?
Live and have fun!
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My camera; I like capturing moments in life in order to reminisce about them later on.
If you could be any animal, what would you be?
A lovable Persian house cat