My Story of Hepatitis C & Treatment
Mark* is an IHTC patient with hepatitis C. Hepatitis C is a viral infection that causes liver disease. Mark also has HIV, contracted many years ago from non-virally inactivated plasma-derived clotting factor concentrates.
We asked Mark to share his story of living with and seeking treatment for hepatitis C.
When were you diagnosed with hepatitis C?
I was diagnosed back in 1991.
What are the challenges of living with hepatitis C?
There was always a fear that hepatitis C and liver disease would lead to liver failure or liver cancer.
I was always tired, but I’m unsure if that’s directly related to hepatitis C or other things.
There was always the fear of transmitting the virus to a family member. Even though we know we take every precaution and it is hard to transmit, it is still always in the back of your mind.
Why did you choose to undergo treatment?
If there is a possibility of a cure, I’m going to go for it. That was the consideration the first time. I’ve been through it 3 times. 47 weeks in 2006 and once prior to that time. At the conclusion of the second treatment, I said I would never do it again…unless there was a higher rate of success. And, for me, the cure rate was closer to 85% with the newer treatment with all three meds.
What were your fears and concerns about undergoing treatment?
My primary concern was whether or not my red blood cell count would be too low to tolerate treatment. But the clinical teams (the IHTC and the Indiana University School of Medicine Gastroenterology/Hepatology) watched my labs and ordered medications and therapies as needed.
How did you tolerate treatment?
The injections and the pills were no problem. The only problem was having my HIV medications adjusted and having some nausea with that new medication. I grew tired of sticking needles in my belly, the weekly lab draws, and the frequent doctor appointments. The major side effect was fatigue; I was very tired. It was very draining on my body and I spent much more time in bed.
What would you tell others considering treatment?
Weigh the facts and weigh the percentage of cure. If it’s a high percent of success for cure, what is holding you back? The higher rate of success makes treatment worth it! It’s better to get the treatment done and suffer 48 weeks and live hepatitis C-free instead of living with the disease for the rest of your life.
Now I have a shot at getting some energy back.
My liver can regenerate some healthy tissue back as opposed to it getting worse.
Mark’s wife adds: Be aware that your life can go on hold for the duration of the treatment, which could be as long as 48 weeks. He chose to give the injection on Sunday evenings so he could go to church on Sunday mornings. Of all the weeks he was on treatment, he only missed one day of church. But the rest of the week was harder and less predictable.
You can have feelings of isolation because you’re so focused on your treatment, labs, and appointments.
Coordination of care between IHTC and my hepatologist (liver doctor) was key!
To learn more about hepatitis C, visit the CDC. If you would like to be tested for hepatitis C or would like to discuss treatment options, contact the IHTC at 877-256-8837.
*The patient’s actual name was not used in this story.