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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?
I don’t know the exact incident or circumstances about when I contracted it, but I pretty much guarantee that I picked it up between the early to mid 1980s.
When were you first diagnosed?
This is where my memory is a little tricky and a little vague, because I went to jail in 1988, and I don’t recall the conversations that went down with the medical staff. Not putting any criticisms on them, but I just really can’t remember, but obviously at some point I was blood-tested. I remember being in an office with a nurse, and she told me that I had this blood thing. When I look back on it now, she was talking about hep C, but it was all very vague and remote, and a little bit abstract… and to tell you the truth, I didn’t really comprehend what it was all about. Shortly after I left prison, hepatitis C came on the radar in Perth, within the injecting drug community. Everyone at the Methadone Clinic was getting tested and coming back with positive results of hepatitis C, and my wife and I got tested at that time. I’d kind of forgotten that conversation that I had had with the nurse in prison, so I got tested again. That would have been around 1990. We had already started being careful, and we did that in time for most of us to avoid contracting HIV, but we already had hep C.
What impact did hepatitis C have on your life and how have you managed that?
Wow. You know, the immediate impact was when my wife and I were sitting together in the doctor’s surgery, and he told us that we had tested positive. He looked at me and said “Your liver’s okay”, and he looked at my wife and said “Your liver’s shot – your liver is really badly damaged.” She took it really badly and never really recovered from that diagnosis. It really just fed into a downwards spiral in the way she lived and the way she approached her life, and it wasn’t that long after that, she died. Her death was definitely connected to her diagnosis and the fact that she had liver damage from hepatitis C. I always say that it came out of left field, it was unexpected. Being a fairly young guy at the time, in my early 30s I still felt a bit bulletproof, even though I had people so close to me getting sick and dying. You couldn’t get any closer than my wife, and other people who I saw getting sick… it was still like “Its not me. I’m okay”.
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?
We made a pretty concerted effort not to share needles with others, and we didn’t share each other’s needles. However – and I’ve seen this with other people too, and I have talked to guys in the prison system about this – when it comes to the crunch and you really want to get that drug into you, you just think “What the hell”. Not everyone is like that, but some people are, and I was like that. I didn’t know whether that needle had a virus in it, but I knew it had a drug in it, and I wanted that drug. I was prepared to cross my own line of acceptability, but that was how I weighed things up at the time and that stuck with me for many years. It didn’t happen often, but it did happen, so I can’t say I was 100% vigilant but at times I did cross that line into the danger zone, and I did that quite consciously, and I still talk about that when I do my education presentations.
Other than sharing, did you have to change anything in your general life?
The one thing that I did consistently, pretty much from around 1990 when I had that confirmed diagnosis, was that I went to the doctor for regular blood checks. I tried to make it every 6 to 12 months but sometimes it was every 12 months to 2 years, but I’d go in and have a regular blood check, and I would monitor the health of my liver. I was a person who the doctor would shake their head and say, “Your ALTs, your liver function – I don’t know why, but its still in the healthy range…” so that just added to my own sense that I’m bullet proof. It wasn’t until I got older that I started to think about it more seriously – about how bulletproof I actually was.
Did you personally have any issues about disclosing to people about your diagnosis?
Yeah I did. After my wife died in the mid 90s, I was a single guy again, I was looking at having girlfriends, and I did have to think, how am I going to approach this? I had a close relative who had a boyfriend at the time – she felt pretty connected with this guy, and I thought he was an okay kind of bloke too. Even though there was an understanding that this virus was not sexually transmitted, there was still some doubt and fear that there still could be a risk of transmitting it. She happened to just mention to this guy who she was in a relationship with that she had hepatitis C, and he just disappeared – you couldn’t see him for dust. We heard later that he had mentioned it to a few people and he was terrified. Something I did – one way I approached it was to just put it out there. Back before the Internet, they had the personal columns in the newspaper, and I put an ad in the local paper just describing myself – I said I’m interested in hooking up with some ladies, and the first thing I put there was “Hep Cat”, and all the inquiries flooded in from women who had hep C and the same concerns.
Were there any incidents at work where you had to disclose?
There was an incident at work – I was working for the Australian Public Service, and I had been doing some voluntary work at the AIDS council. At that time I knew there were a couple of other fellas in my department who had some connections with the AIDS council too but we didn’t discuss it much – they were much higher up. Then one time some people came around to give the office staff a talk about blood borne viruses, and I was taken back from some of the suggestions from coworkers, some of the protocols to be put in place, you know like mandatory testing, segregation etc. I guess my attitude was casual about having hep C, but it made me really aware that I wasn’t always going to get the reception that I expected. I realized that maybe I needed to take a step back, and just zip up a bit and not be so forth coming on what I disclose.
What support mechanisms did you have to get you through?
I have used them for decades now – and I applaud the work they do, the Metropolitan Drug and Alcohol services in East Perth (they have offices all over now). I’ve always utilised their services for different reasons – for methadone or for a bit of counselling or just to see a doctor. I use a GP now, but I always use to go there and see their nurse and sometimes their doctor. That’s where I’d had all my regular liver function tests and blood tests over the years, so they were a huge support mechanism. I’ve been involved in the Western Australian Substance Users Association (WASUA) as well and used them as a resource and getting an education for myself, keeping abreast of developments and being able to share what I know too, keeping a discussion going with my peers.
Did you ever go onto the interferon based treatments and if so, what was that like for you?
No, I’ve always had discussions with people who were taking it and that was a big part of the reason I didn’t try it. I didn’t feel like I needed to, and the general consensus at the time was “Don’t go on treatment unless you’re really sick from hep C”.
Why did you decide to try the new treatments?
I’d been going on for many years just living with hep C and it was just always at the back of my mind, and sometimes at the front of my mind. Over time I started to become aware of people I’d known who were living with hep C, starting to complain and saying “I’m getting symptoms from my hep C, my liver’s not too good”, and the population was ageing. I was starting to move away from a life that was so heavily involved with drug-use, and that made me think about things a little differently. Also moving into middle-age, I think I was starting to feel and take a bit more responsibility for myself, for my family and people around me. I started to think more seriously and at this point I’d say, if the new treatments hadn’t become available, I may well have just gone on the interferon treatment. I was ready to go on treatment, and I’m pretty sure I would have embraced the interferon treatment, but this was just good timing for me.
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