Carol’s Story
Name: Carol
Gender: Female
Age: 58
Who is Carol?
Carol lives by herself in regional New South Wales, Australia, and runs a small business. She describes her ethnic background as ‘Australian’: while she was born in Australia, her parents were born overseas. She says being cured of hepatitis C was ‘surreal’ because she ‘didn’t feel much different’.
Brief Outline:
Carol runs a small business in a regional town in New South Wales. She was first diagnosed with hepatitis C in the early 2000s, but it cleared spontaneously, without treatment. About 10 years later, she was diagnosed again and advised to postpone treatment until the new treatment became available. Carol’s family grew while she was waiting for treatment, and the birth of her grandson encouraged her to go ahead, as she didn’t want to ‘take any chances’ around him. Her treatment was successful, and she has been free of hepatitis C for about four years.
Carol was diagnosed with hepatitis C again about 10 years later, when she was in her mid- to late forties. She explains that during this time she had started ‘indulging’ in injecting drugs and received a ‘positive reading’ on one of her regular blood tests. She recollects that some of the ‘local girls’ in the area who she consumed drugs with told her that they’d ‘all got it’, and this is how Carol thinks she acquired hepatitis C again.
Carol was interested in treatment but recalls her doctor informing her that the new treatment was available in the US at the time, so she should wait until she could get it in Australia. She explains that her work, family and financial commitments meant that she couldn’t have the interferon-based treatment due to its debilitating side effects: ‘I couldn’t go down with being sick for months, you know. Because I’ve got a little shop, so I had to get rent together and […having a shop and a house is] sort of two rents, two power bills, you know what I mean, and maintaining a car [and] maintaining myself. I’m in the lower income bracket, so I just did what I could do, [to] sort of make the best out of the situation.’
Family is an important part of Carol’s life and shaped her concerns about hepatitis C. She remembers following a nurse’s advice to speak to her children about the disease and ask them to get tested too. She says, ‘So [my children] all had the test and […] all came back negative.’ As she explains, the arrival of grandchildren meant that she was especially aware of her hepatitis C: ‘Since I’ve had grandkids and stuff, you know, I’ve always been very careful, because I didn’t leave myself open to a blood-to-blood contact. But I wanted to [cure] it, especially with the little people around.’ For Carol, the arrival of her grandson was the ‘biggest’ impetus for her to get treatment in about 2016, because she didn’t want to ‘take any chances’ around him.
According to Carol, having treatment was ‘stressful’, but she coped by trying to walk her dog every day. Carol’s treatment cured her of hepatitis C, and she describes the experience as ‘a little bit surreal’ because she ‘didn’t feel much different’.
Explaining how her family shaped her treatment experience, Carol (F, 58, repeat diagnoses, experience with new treatment [DAAs]) says that her sister helped her understand test results and that her grandchildren were part of her motivation for treatment.
I think the biggest [reason I had treatment] would have been when […] my eldest son and his wife got pregnant with their child. You know what I mean, so, like, I didn’t want to take any chances, you know, sort of, like, so I spoke to […] the 1800 number for the Hepatitis line. Well, the thing is that my niece had hep C too […] and just talking to my sister about the antibodies and stuff like that, I worked it all out. I [made] copies of my blood tests and my liver scans, so that I can compare them or have a look at the different results.
Carol (F, 58, repeat diagnoses, experience with new treatment [DAAs]) was cured of hepatitis C but describes still needing to pay attention to her diabetes and diet.
I have a little bit of trouble in my legs, but […that’s] part of having type 2 diabetes […] I still do what I was doing [during treatment]. I try and walk, I’ve got a [dog], so we walk every day […] I still like to eat [some treats], you’ve got to live, you know what I mean? There’s no point in eating fruit and vegetables and being depressed because you would feel like you’ve got no quality of life […] It’s just listening to your tummy and doing what’s best without sort of going overboard. At the moment, we are carving out cheese. Like I had a little run on cheese, and I find cheese with a high fat content, it’s got to go. Milk chocolate’s got to go.
Carol (F, 58, repeat diagnoses, experience with new treatment [DAAs]) recommends focussing on health beyond the hepatitis C treatment and cure. She explains that regular walking has been especially helpful.
Just persevere […] The thing is when you have the treatment and you [cure] the body, you’ve still got to work with the body and maintain a better lifestyle. So, I suppose I’m lucky, because I’m on the coast, you know, and I’ve got a variety of beaches to choose from and [I so love] walking. I think the walking has helped the most.
Focussing on a different issue, relating to her treatment back in 2015, Carol (F, 58, experience with new treatment [DAAs]) says that living regionally and missing appointments could result in fewer staff follow-ups.
I had an appointment that didn’t suit, so I had to change it, and if you do that more than twice, you are off the list, more or less […] Yeah, but I suppose they’ve got a lot of people to deal with, you know what I mean. You’ve got to respect that as well […] You can’t be messing them about.