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Recording Hepatitis C: A Patient's Treatment Journal


Ana Johnson of San Marcos, Texas, underwent treatment for hepatitis C last year. She believes she contracted the disease after receiving a blood transfusion during a C-section. Johnson lived with the diagnosis for 17 years before seeking treatment. She says her mind changed because her treatment options changed.

ANA JOHNSON: At that time, Melissa, the treatment for what I have is called a 1B. And 1A and 1B are the most prevalent in the United States and they are what's called hard to treat, hard to cure. So I would've had to have gone into a treatment that was 48 weeks long with about a 30 percent chance of a cure. And to me, that was not an option and I just kept holding out for something better to come along.

BLOCK: And ultimately, something did.

JOHNSON: Ultimately, it did and it came out last year. And for us hard to treat, 1A, 1Bs, there is a treatment now that is an 80 percent cure rate.

BLOCK: And you're done with your treatment and doctors have told you you are cured, right?

JOHNSON: I am 20 - I am past my 24-week post treatment mark and at that point, you are pretty much considered cured. And I came back with that, what they call, undetectable and that was one of the greatest days of my life.

BLOCK: When you decided to go forward with the treatment for hepatitis C, Ana, was that a hard decision to make? What changed your mind?

JOHNSON: Well, we have a unique situation in our household. My husband's first wife, Mary, she as well had hepatitis C and Mary was diagnosed with cancer, liver cancer, which is one of the side effects, cirrhosis, liver cancer, and those are one of the things that we have to be tested for on a yearly basis. And Mary died from complications two years ago. And that was something I watched very closely with his three children.

And right about that same time, the new triple therapy came out and with a shorter treatment option. It used to be 48 weeks. My treatment was 29 weeks and the cure rate went from 30 percent to 80 percent. And I was in.

BLOCK: The treatment regimen, as we heard in Jon Hamilton's piece, is quite grueling, can be really taxing on the body. Describe what it was like for you. What was your experience?

JOHNSON: Well, grueling is a really good way to put that. The side effects are flu-like symptoms. And when they say flu-like symptoms, they mean flu-like symptoms. I had fever for about six months of my treatment, which was managed with ibuprofen. The treatment causes a lot of anemia, so the fatigue, the weight loss, the mouth sores, the weakness. Let's just say that, Melissa, I'm very athletic and in celebration of finishing my treatment, I did a 75-mile ride with my husband the other day.

And during treatment, I could not walk to the mailbox.

BLOCK: But you were convinced as you were going through this treatment that there was a positive outcome in store for you and that it was worth it.

JOHNSON: I believe, based on what I watched with Mary, the disease is either going to take your life or you're going to beat it. So those are your options.

BLOCK: Ana, I was watching a bunch of video blogs that you posted on YouTube during the course of your treatment. What compelled you to do that? Who were you speaking to as you described what you were going through, what the effects were?

JOHNSON: Melissa, that video blog began because prior to going into treatment, I just had this need to look into the eyes of somebody who was ahead of me, somebody who had endured and the only thing I could find online was very, very scary stuff. And I decided to do a video blog based on the truth. And the support in the community that came out of that is absolutely mind-blowing.

I actually had a handful of people contact me and tell me that I am the only one they've ever shared that they have hepatitis C because there is such a stigma that surrounds the virus, the disease.

BLOCK: Walk me through just sort of what that stigma is.

JOHNSON: The stigma is that there is this idea that you had to be an IV drug user, Melissa. And I'm going to give you a story about one of the gastroenterologists that I was considering using for treatment and he asked me a few things, if I'd had an early tattoo and I had received blood.

And when I gave him the example of receiving blood when I had given birth to my child, he sat there with me and began to almost play with me in this way. He was like, no IV drug use? And I said, no, I was not an IV drug user. And he said, come on, maybe just one wild night at some point.

And that's when my husband stepped in because the look on my face was - I had nothing to say. And he stepped in and said, I believe we're here for a cure. So even the doctor was trying to convince me to admit to him that that I was an IV drug user.


JOHNSON: And I believe if you were, that's OK. It's OK. It's just now we have a cure, get well. You can be well.

BLOCK: Ana Johnson, thank you for talking with us.

JOHNSON: You bet.

BLOCK: Ana Johnson of San Marcos, Texas, she went underwent successful treatment for hepatitis C last year. Transcript provided by NPR, Copyright NPR.