Jess’s Story: Hepatitis C Journey–and a healthy future.

My journey with Hepatitis C started in January 2017. I was in to see my family doctor for STI testing after leaving a relationship where I suspected infidelity. She had just taken me on as a new patient. During the appointment, we were discussing my medical history. I disclosed to her I had a history of problematic substance use, and consumed drugs intravenously for a period of time. Because I didn’t know when the last time I had been tested, we decided it would be a good idea to test me for HIV and Hepatitis C along with the STI test, and so the journey began.

Two months later, my doctor called to inform me, my blood work came back positive for Hepatitis C. In that moment it was devastating news, however it was not a complete shock. I did not show any signs or symptoms of having Hepatitis C, but there were times in my using history when I did not practice safe injection techniques, and mainly because I didn’t know any better. I was told, even though my blood work shows the antibodies, there was the possibility my body could fight and reverse the virus on its own. I would retest in three months. If the results come back positive still, then I would be referred to a Gastroenterologist to discuss treatment options. Three months later, my blood work confirmed the virus was still present. I was referred to a Gastroenterologist.

Before I could meet and discuss treatment options with the Gastroenterologist, they needed to see the condition of my liver. I was required to have a fibroscan.  This was a non-invasive appointment, much like an ultrasound. They placed a wand on my abdomen where my liver is, and it “tapped” my liver. This showed how hard my liver was and if it had suffered any damage or scarring.

 I finally met with the Gastroenterologist in the beginning of 2018. During this appointment, we discussed the following;

  • If I qualified for treatment. At the time the BC government was not treating everyone who was infected with the virus, as treatment was very expensive. You had to meet certain requirements to be treated. Because I was a woman of child bearing age (and could potentially pass the virus on to my offspring, should I get pregnant), I qualified for treatment. Another requirement for treatment was I had have quit using drugs intravenously for a certain amount of time. They were not going to treat someone who had a high risk of re-contracting the infection. By this time, I had not used IV drug in two years, so I qualified.
  • We also discussed the condition of my liver and the strain of Hepatitis C I had acquired. The fibroscan showed my liver had suffered damage and showed signs of scarring. I had a low viral load. With a cure and a healthy lifestyle, the liver can repair itself. I was prescribed Epclusa as my form of treatment. She assured me treatment had come a long way since the days of Interferon, and it was easy and painless, with very little side effects. People reported a lack of energy for the first couple of weeks while the body adjusted to the medication. I was to take one pill, at the same time each day for 12 weeks. At the end of treatment we would do blood work again to see if it was effective.

After the appointment I was contacted by the pharmacy responsible for dispensing the medication. They applied for funding on my behalf, and I was eventually approved. They mailed the prescription to my home, every four weeks.

On March 02, 2018 I started on Epclusa. I found I was lacking energy, around week two and three after starting the medication, which is a common side effect. It did not affect my day to day life. I only felt this was a short while before things went back to normal. For the rest of the time on the treatment, I felt fine, and lived life as normal. The twelve week came and went. I took my last Epclusa pill on May 8, 2018.  At the end of treatment I returned for blood work. On August 28, 2018, I received good news, the treatment had been effective.  I was cured!

What my life is like now… Life is good, really good. I am cured of Hepatitis C. It was a long process with a lot of waiting and uncertainty. Thankfully today, the process has been simplified, and anyone who is infected qualifies for treatment, which is rad. I am so thankful my family doctor took the initiative to have me tested, because if she did not, I would still be living my life, not knowing a silent killer was waiting in the background.  Today I have a healthy future.

Jessica Lamb 

Female, 31 years of age

Eileen’s Story: A startling blood test, hep C clearance, and launching a support group.

We are thankful for Eileen Abrams’ sharing of her story, as we believe in the importance of being tested for hep C even though it can be stressful. We know a positive antibody test does not always mean you have chronic hep C. Elieen shares her experience with us.

After having blood work done my Doctor calls, I need to come in for a visit immediately. I wasn’t really concerned as I had been anemic as a child and thought I needed some iron pills. When I was called into his office he seemed very serious as he tells me I tested positive for Hep C. It didn’t upset me as I didn’t know what Hep C was, figuring he would give me some meds to clear this up. He then tells me he is sending me to the top liver doctor at UC San Francisco Medical Centre. I suddenly realized this could be serious, and after discussing this with me he informs me that I could die from this virus and probably have 20 years to live.

On the way home to Oakland where I lived, I started to panic. After doing some research on my computer I completely freaked out. I felt that I had an enemy inside of me that I had to get rid of. My appointment with the specialist wasn’t for another week, and I knew I needed to talk to someone who had this virus. I then called The American Liver Foundation in San Francisco and they suggested I call a man who was going through the treatment. The conversation I had with him was very disturbing when he told me I will probably die from it.

The Doctor at UCSF Med Centre was very kind and explained they were doing another blood test that would define whether I did have the virus and what stage it was at. This was a very difficult time for me as my sister who lived in Montreal was dying from breast cancer. On my way to see her, I get a call from the Doctor telling me that I had been exposed to the virus but my body had cleared it naturally. I was filled with joy and sadness as my sister passed away before I reached Montreal.

I’ve always felt that certain things happen for a reason and I knew I had to give back in some way. I felt there were others out there with the virus who might welcome some support and I created a support group by telling my story to the media. I as well reached out to Bay Area Rapid Transit and was able to put huge posters on 140 trains for three months of the year for six years and a number for them to reach me at. I was overjoyed at the results. We met once a month at Kaiser Hospital in Oakland.  I chaired the meetings and people were relieved to have a safe place to talk about their condition. We shared information on meds, diet, fear of what the future held for them as the treatments were very harsh 20 years ago. Some people became very good friends and others were just happy to have a place to share their feelings.

I realize that for the six years I ran the support group it was very helpful for those who were at different stages of the disease.