Our HCV Story... A Mother and Daughter Journey

HCV has been affecting my life since 2011. This was the year both my mother and I were diagnosed. Why? Because Hepatitis C isn’t regularly tested for. Also, because if it weren’t for my mother falling at a gas station and her doctor testing Baby Boomers, we wouldn’t have known. There was the yellowing in her eyes and hands that were clues, but unnoticed by doctors for many years. At 24, I was diagnosed with the “silent killer” disease. How did I go 24 years, not knowing? Better yet, how did my mother go years without knowing? She had surgery on her knee in the '70s and needed a blood transfusion.

The beginning of the end

January 2012, we had biopsies a day apart. Within 48 hours we got two calls. Hers went something like this: “Jay, you have stage 4 liver disease and cirrhosis. We need to start you on treatment asap”. My call informed me I had type 1a and that I didn’t need treatment at this time. In February, my mother started her Pegasys interferon ribavirin combination that didn’t quite end well. By May, her flu-like symptoms landed her in the hospital. The doctors said, "Her body would shut down and she would bleed from every orifice”. They didn’t lie. The second day in, she lost her motor skills. On day three, she started dialysis because her kidneys shut down. By the 11th day and a transfer to another hospital, she was dead. At 24, when my life was to just begin, it had already ended.

So, what's next?

When I went to my gastroenterologist to express my interest in beginning treatment, she shut me down. She told me to have a couple of kids and then come back when we have better medication. Why couldn’t I get treatment then? Why did I have to pop out kids in order to receive treatment? Fast forward to 2015 and I just delivered my first child. I was so scared of vertically transmitting this silent killer to her that I did everything in my power to get her and myself checked. So, I reached out again to my GI doctor and she again denied me treatment. Skip to 2017 and I’m pregnant with my second child whose due date just happens to be the same day my mother passed away, May 27. All of the questions and concerns were back in full effect. Luckily, neither of my kids contracted HCV.

Finally, HCV Treatment

October 2018, I finally got the call. December 4th, I began Harvoni, three days after my 31st birthday. On January 28, 2019, I took my last pill. April 24, 2019, I got the call. I am finally HCV free.