Life After Hepatitis C
HepatitisWA recently had the pleasure of interviewing Perth man Rodney about his personal journey with hepatitis C.
Who is Rod?
I consider myself to be a Perth bloke, grew up in the beach suburbs, I’ve always hung out in Scarborough, always hung on the beach. I’ve always skated and love to get into the water and do a bit of surfing. I still ride a skate board and still get in the water, still go to the same beaches that I’ve been going to since I was a little kid where I learned to swim down at Mettams Pool. I still go down to Trigg in the morning and jump into the water and do a bit of body surfing – that’s who I am. I love the climate, I love Perth.
How were your teenage years?
My teenage years personally, for me and my peer group with what was going on in the world at the time was highly experimental. Drugs were all a part of that, and I actually couldn’t wait to get into it. That had all sorts of repercussions in my life, you know, good and bad. It wasn’t all about drugs, but that was a huge part of it, and that’s made me who I am today. I was talking to someone recently about this, they asked me if I could go back and change all that drug history would I? No, I probably wouldn’t because if I said I’d go back and change things that would be the same as saying, I want to be a different person to who I am now and I actually don’t.
How long have you been living with hep C?
When were you first diagnosed?
What impact did hepatitis C have on your life and how have you managed that?
In that time, did you have to make big adjustments to your life? You have already said you were not sharing at that time because you recognized the risks of HIV. So even though you talked about not sharing with others, did that include your partner?
Other than sharing, did you have to change anything in your general life?
Did you personally have any issues about disclosing to people about your diagnosis?
Were there any incidents at work where you had to disclose?
What support mechanisms did you have to get you through?
Did you ever go onto the interferon based treatments and if so, what was that like for you?
Why did you decide to try the new treatments?
When did you start these new treatments?
Well, the way that came about was about 18 months ago, about halfway through 2014, I became aware that there were clinical trials being conducted. Part of the reason I became aware of that is that I started volunteering at HepatitisWA. I’d been pretty much unemployable for some years, and had been in a bit of trouble and thought, I can start to reintegrate into the community by doing some voluntary work. So HepatitisWA was one of my first choices and I thought I could come here, do some good, and it
would also be the ideal environment to hone up on my personal hep C education. I really started to enjoy coming to HepatitisWA and working as a volunteer, and I really did beef up my knowledge and got back on track with what it’s all about. Something that came across my desk literally whilst volunteering, was information about some new hepatitis C trials, so I gave them a ring, and they put me on their register. I got a call from them asking if I wanted to be involved, so in November 2014 I went in and took part in some Harvoni trials. I was hospitalized for a couple of weeks, and that was quite good actually because I was swatting from some exams at the time, and I was getting behind in my assignments, so being on lock down in the hospital worked out well. So I did that. It was one of those blind trials, I still don’t know till this day if I actually got the Harvoni or the placebo pill, but I did go and see my GP after and he said “Oh, you’ve had quite a dramatic drop in your ALTs”. So I did the trial and life went on, and then it started to become obvious that these new treatments were starting to become widely available and then I got a call from the company that did the trial saying “Well, because you did a trial, we want to offer you a treatment. These drugs are going to go on the market, they’re not on the market yet, but we’re going to get you in on the ground floor, and offer you the treatment” and I thought, yeah you beauty. So it was a year later in November 2015, that they made the offer and in the meantime, the Australian Government announced that the treatments were going on the Pharmaceutical Benefits Scheme (PBS), so I got a little bit of a jump start on that. It took a few months to organise, so I started the treatment at the end of March, and was put on a 12-week Harvoni treatment plan.
Were there any side effects and what were they like for you?
I found it really hard to detect any side-effects. One thing that happened when I was participating on the trial was that I had this itchiness, and they were right onto that. I started getting a bit of a rash on my neck, and its something that came up again when I actually went on the Harvoni. I thought, yeah that’s unusual, but its not that unusual. They gave me a little bit of cream to deal with it. So when I was on the Harvoni 12-week treatment plan I got the rash again and it would last a couple of days and would get quite annoying. It would come and go over the three months. It might have happened three times.
What adjustments if any did you make in that three months? How has your life been?
I haven’t made any special adjustments to how I live my life. If anything I’ve upped the anti, because as it turns out, I was going overseas for a month so I let the doctor at Royal Perth who was overseeing my treatment know, and she said “Yeah no worries”. She wrote me a letter so I could carry my treatments and show that this was a legitimate prescription. I never needed to show it to anyone, I just kept my drugs and letter close to me. The most difficult thing was actually remembering to take that pill every morning when I was on holidays. I enjoyed the holiday, I was full of energy, I was enjoying myself and there was nothing that went on with me, you know, mentally or physically, that I could say “Oh that’s because I’m on those pills”. Except for those rashes I mentioned, which may or may not have been from the treatments. The reason why I said the hardest thing was to remember
to take the pill, was because there were no side effects so it was easy to forget that I was even on treatment.
Were you nervous about making the phone call to see if you had cleared the virus?
No, actually I wasn’t. My wife was really excited about it, and she said to me, you know “I’m just so happy that you get this opportunity to experience a cure”, and I was too, you know. I’ve seen enough tragedy with people close to me and people I just hear about who have really suffered not just from the physical effects of living with hepatitis C, but also the way people have been treated due to fear or ignorance. So I’ve seen enough of that tragedy to know that for myself personally, I’m in that lucky percentile, and that luck has seemed to just held all the way through.
What does it mean for you and your life having cleared hepatitis C?
Part of it I think is just realizing the additional kind of tension, anxiety and concerns that I had about different things. Such as doing certain things and inadvertently passing on the virus to someone else, just through letting my guard down at some point. So I think being able to relax is huge. I think about that in terms of being with my grandchildren when I’m out doing rough and tumble with them, it’s easy to cut yourself or have some blood. At the same time though, I’d like to instill in them that sense of being responsible for blood as well, take the time to stop and clean it up, cover, let’s play the blood rule. You know, turning 60 is a milestone, and I can think, okay I’m going to have a healthy life with whatever much time I’ve got left. I’m going to enjoy it to the max and do things that I need to do to stay fit and healthy as long as I can. Now that that concern has gone away, I can admit to myself that yeah it was a concern. I may have down played it in my own mind, but it was always there and it was increasing as I got older.
So playing it down, is that kind of a survival mechanism?
I think so. And also, you think, well its there – there are only so many things I can do. I can be vigilant about certain things but I’ve only got so much control over the situation – whatever comes along, I’ll just have to wear it. But being clear of hep C is exciting. It’s a really good feeling.
What would you say to those people out there who are living with hepatitis C and contemplating treatments?
Well firstly I’d say, if you’re living with hep C it’s probably time to contemplate treatments no matter how early in your diagnosis and no matter what kind of life style you’re living. It’s now within the realms of possibility for anyone at what ever stage that you’re at, so I’d say get as much information as you can about the whole thing and really put it on your radar. Start planning to go on treatments! Over my life, that option wasn’t available. I contracted hep C as a young bloke with a lot of my mates – we lived with it, the treatment option wasn’t really there and the treatment option that was there wasn’t always successful. There were a lot of negative side effects and I saw some young blokes get really sick from hepatitis and suddenly deteriorate before my eyes. They’d loose all their mojo, and it was a really sad, tragic thing to witness. For young people now who may have recently contracted hepatitis C, they don’t have to have that. They can go on treatment while they are young, before there are too many detrimental effects of hepatitis C. So that’s the message I would put out to people is to take advantage of the opportunity that you’ve got now and don’t let it drag on any longer than it has to with that potential to do you a lot of harm.
I would like to acknowledge the fantastic work that HepatitisWA does. I’ve seen the organisation evolve and develop. I remember when the organisation was founded and the development that it went through, and the organisation that it is now. I think that it’s a fantastic community resource that anyone can tap into in so many different ways. I’m really grateful for all the information that I’ve got through HepatitisWA and all the friendships and comradery. HepatitisWA has had a really positive impact on my life and I’m really grateful for that, so I’d like to thank the organisation for that.
BY RODNEY HATCH