Lou’s Story
Name: Lou
Gender: Female
Age: 40
Who is Lou?
Lou lives with her two children in regional Victoria, Australia and works in social work. She describes her ethnic background as ‘Australian’: like both of her parents, Lou was born in Australia. For Lou, being diagnosed with and eventually being cured of hepatitis C highlighted the unpredictably of life and importance of ‘mak[ing] the most of what’s in front of you right now’.
Brief Outline:
Lou works and studies part-time. She was diagnosed with hepatitis C in 2012. She acquired it through a medical operation in infancy. She postponed her treatment until after she had finished breastfeeding her two children. In 2017 she was cured of hepatitis C with the new treatment. Overall, she characterises her treatment experience as ‘a bit of a non-event’ but ‘good’.
Lou remembers that many years before finding out she had hepatitis C she had asked her cardiologist if it was possible that she might have gotten HIV from her blood transfusion. She recalls that he said, ‘No, of course you don’t have AIDS’, which made her ‘feel a bit silly’ at the time and she ‘really never thought about [the blood transfusion] again’. This was part of why her hepatitis C diagnosis came ‘as a complete shock’.
After her diagnosis, she was advised not to have the older, interferon-based treatment available at the time. She had just started a new job and was told it would ‘play havoc’ with her work. She remembers that as she had had hepatitis C for ‘so long’ it was recommended that she ‘wait a few more years’ for the new treatment to become available.
In the meantime Lou became pregnant, and eventually went on to have two children. As she explains, pregnancy ‘caused some anxiety around […] the likelihood of […] passing it on to the kids’, and while she remembers being advised the chances of this happening were ‘quite low’, she eventually had tests to confirm neither had hepatitis C. Lou’s pregnancies also deferred consideration of treatment, and she recalls waiting to finish breastfeeding both her children before beginning treatment: ‘I waited until after I’d breastfed my eldest and then I started to think about [treatment] again, and then I got pregnant with [my second child] and then waited until I’d breastfed [him]’. By the time she was ready to consider treatment, the new treatment had become available.
Once Lou completed the treatment, she had a blood test and was told ‘great, it’s gone, you are all good’. She describes the treatment experience overall as ‘good’ and a ‘bit of a non-event’.
Reflecting on her experiences, Lou says they have ‘add[ed] to my thinking that you just don’t know what’s coming around the corner [in life], so just make the most of […] what’s in front of you right now’.
Lou (F, 40, experience with new treatment [DAAs]) explains that she didn’t think hepatitis C was in her ‘orbit’ until a sexual health check led her to find out that she had acquired it through a medical procedure she had as an infant.
So, I had started a new relationship, and we thought, ‘Oh, we should do the right thing and get an STD* check’. And so I got one, and that was the first time I’d had one, and … that was the results from the doctor. So that was quite a shock, and I had thought, like … [hep] C just wasn’t in my … just wasn’t in my kind of orbit really. I remember back when I was 18, and I see a cardiologist every year because I had heart surgery when I was a baby, and it was from the blood transfusion at the […] hospital […] Yeah, so that was how it was acquired, as a baby in 1980. And, yeah, so I remember saying to my cardiologist when I turned 18, I said, ‘Could I have got AIDS?’ Because I remember there was a lot of information that had been [circulating about] people getting HIV in the ’80s from blood transfusions, and he just sort of laughed me off and said, ‘No, of course you don’t have AIDS’. And made me feel a bit silly. Then I really never even thought about it again, so yeah, it did come as a complete shock.
Lou (F, 40, experience with new treatment [DAAs]) explains that she consulted her cardiologist before starting treatment, because she was managing other health issues at the time. She recalls not experiencing any side effects and describes the treatment as a ‘non-event’.
I think I took three tablets a day for 12 weeks. I didn’t have any side effects. I was told that the side effects would be minimal, and […] they were. I was concerned about, you know … I did talk to my cardiologist first. That all had to be cleared between the infectious diseases doctor and my cardiologist and my GP, because I’m taking aspirin for my heart, so there was no issues there. I’d finished breastfeeding, so that was fine. Yeah, three tablets a day for 12 weeks. I didn’t have any side effects, and then I had a blood test at the end of it and was told, ‘Okay, great, it’s gone. You are all good.’ It was all sort of […] a bit of a non-event really, which is good.
While tests confirmed that Lou’s (F, 40, experience with new treatment [DAAs]) liver was healthy, she described wanting more information than she received about issues to consider after being cured.
Because I asked him that specifically. I said, ‘So what do I need to do from here? Do I see you again in a few years, what happens?’ And he was just again, that dismissive, ‘No, everything is fine, don’t worry about it again, everything’s fine.’ […] Yeah, it would be helpful to know certainly about, you know, any signs or symptoms of anything changing. It would be helpful to know of, you know, if there were any screening programs that would be recommended to me. It would be helpful to know what is best practice in terms of, you know, the ongoing management of somebody who’s had the illness for so long. I feel like I don’t know much about that. I feel like all of that information is geared around, yeah, how to prevent yourself from getting it again through safe needle use, yeah.