My Experiences With Hepatitis C

My name is Andrew Styles and I was diagnosed with Hepatitis C in 2000. I hope my personal experiences help others by inspiring them  to share their own stories. Anyone can get the Hepatitis C virus (HCV or Hep C): women, men, gay, straight, young and old; it does not discriminate.

After the diagnosis, what shocked me the most was learning that the virus had possibly been living in my body for more than 30 years (nearly half my life).  Initially, I believed I was exposed to the virus in 1989 after a needlestick accident with a Hep C patient while working as a nurse aide. Another possibility was my past drug use when I was younger. I rarely got sick and did not pay attention to my symptoms, but as I look back, I had the most common ones: feeling tired a lot (fatigue) and having mild flu-like symptoms such as muscle and joint pain.

I started treatment for chronic HCV infection (genotype 1) on August 1, 2012. I had a few bumps along the way with the treatment regimen of telaprevir/ribavirin/interferon, including rash, depression, fatigue, itching and anal discomfort. I had to stop treatment due to non-response on December 5, 2012.

I am the first patient at Mount Sinai Hospital’s IMA Primary Care Hepatitis C clinic to start the newest treatment to cure HCV (using sofosbuvir/interferon/ribavirin). My first injection was on January 15, 2014 and my treatment will end on April 9, 2014 (only 12 weeks!). Hep C affects each person differently, so my personal experience is unique. I had mild appetite change and mood swings for about two days after starting. I am looking forward to my post treatment follow-up (September 2014) where I will find out if I have been cured.

The experience of living with Hep C is quite different from one person to another. I encountered mood swings, many of which originated from barriers that limit my access to housing and other basic needs. This has crushed my spirit at times. But the Liver Clinic Support Group and IMA Peer Mentor Program helped me tackle the emotional challenges of this disease and any physical side effects. The staff of these programs have strong understandings of hepatitis C, including proper counseling messages based on test results. These programs emphasize that each person, patient, diagnosis, treatment and life is UNIQUE, and I couldn’t agree more.

Furthermore, in assessing my work in the IMA Liver Clinic Peer Mentor Program, two facts must be stated: I had a few bumps along the way in my treatments. However, this program has not only given me a better understanding of Hepatitis C, but also of myself. I feel confident now that I have the talent and intelligence necessary to help others who are not yet cured.

There are many crucial problems encountered by Hepatitis C patients. People don’t often talk openly about Hep C, which contributes to misinformation and isolation for those infected with the virus. Stigma and shame also prevent some from talking about the disease. There needs to be open communication about Hep C, along with more efforts for early detection and early treatment.

If you would like to get tested or treated for Hep C, I recommend calling the IMA Primary Care Liver Program at 212-824-7453.

 

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