No 201 March 2018
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Curing hep C - a personal story
Anthony McCarthy is an Australian community member with haemophilia A
I’m glad to say that hep C and I have been divorced now for almost 5 years. We are so much better apart. I'm told we first became acquainted sometime in the late 1970s, back when hep C was barely known to science. There was no hep C test and it was clumsily referred to as ‘non-A, non-B hepatitis’. I was very young - far too young to be entering into such a relationship. We came into contact through the blood products that were used to treat my severe haemophilia A. Hep C went to work slowly but surely, inflaming my liver, progressively scarring it and toughening it up, when it should be supple and squishy. Hep C was violent and silent, and for most of our time together I didn't even know it was there.
I also acquired HIV, but slightly later in life, when I was at primary school. What a dysfunctional threesome we made. I wonder if the hep C infection made conditions in my body more favourable to HIV? But being exposed to HIV, and seroconverting to become “HIV positive”, really took the attention away from hep C. There is a particular hype and notoriety surrounding HIV that hep C can’t boast. But that suited hep C just fine. It was happy to lurk quietly and do its work. Unlike HIV, which was drama, drama, drama.
I’ll never forget the soul-crushing moment, aged about 25 when it hit home that hep C was potentially incurable and fatal. Until then, I’d kind of dismissed it as a less dangerous little brother to HIV. The reality blindsided me during a meeting I attended at the Alfred to discuss treatment options. I was suddenly overwhelmed with sadness and struggled to fight back tears. It was embarrassing with the room full of doctors, nurses, researchers and patients like me. I wish now that I’d allowed myself to blubber away with abandon.
I first went on treatment in 2001, a 48 week course of interferon and ribavirin. It was really tough going, and I experienced a lot of what the doctors called lowered mood. I was depressed, but in denial because I very much wanted to stay on treatment and clear the virus. My blood counts showed a drop in neutrophils (a type of white blood cell) and I needed to go on an additional medication to stimulate their production. Like the Interferon, it was injected subcutaneously into my abdominal fat roll. Talk about feeling like a pincushion, but I got the job done by focussing on the goal of hep C clearance. Finding out the treatment hadn’t worked was a big kick in the guts but I picked myself up and got on with life. My HIV diagnosis had instilled in me a resilience that I drew upon heavily.
It took several years for another treatment option to become available. In that time I married Jennifer (she makes a much better partner than hep C) and we decided to try to have children. Our decision coincided perfectly with the ‘chronic viral illness program’ then on offer through Melbourne IVF and the Royal Women’s Hospital. Suffice to say there was a lot of science involved and not much romance, but here we are now with a 12 year old son and 10 year old daughter and they are both perfect.
By 2005 I was ready to give treatment another crack, this time with pegylated Interferon. It was scary to face the prospect of a return of the depression, but my desperation to clear this virus overruled those fears. I went for it, this time working hard to improve my chances by quitting work and trying to live stress-free and wholesomely. I started juicing organic veggies and meditating daily and I coped much better on treatment the second time. The depression stayed away but the problem with the neutrophils returned. To learn that the treatment had again failed was a disappointment of epic proportions. I felt beaten, and jealous of those others who had cleared hep C.
By 2012, I was approaching the pointy end of a long-term hepatitis C infection and the prospect of a transplant, though some way off, was very unappealing. I can’t say I ever noticed any symptoms directly stemming from hep C; no discomfort, jaundice or pain. Just the less tangible symptoms of abnormal liver function results and fibroscan results showing fibrosis/cirrhosis. I was given the opportunity to go back on treatment that year which was wonderful because I was running out of time. And this time there was new hope. A protease inhibitor called telaprevir was added to the interferon/ribavirin combo. My specialist says it was clunky, but the best cocktail possible given my genotype and history as a co-infected non-responder. Don’t you just love medical lingo.
I needed to take telaprevir for the first 12 weeks of the 48 week course. It was a very hard drug to take and I honestly don’t think I could’ve lasted for more than 12 weeks. It would burn my back passage something fierce. To minimise the burning, I was advised to take the tablet with a good measure of oily food such as cheese, butter or olive oil. It helped somewhat but the oil component was nauseating when I lacked an appetite. The other challenge was taking it 3 times a day. It's quite a challenge to coordinate a tablet every eight hours and around meals and sleep.
But it was all worth it. So worth it. I can’t express the joy I felt when my hep C tests started to come back negative. I remember the doctor saying for the first time that my liver function was normal. I couldn’t believe my ears. I had to ask, “you mean normal for me?”, to which he replied, “no, normal for the population”. I was totally floored and thrilled.
So now I’m ecstatic to live with a cirrhotic liver that's not getting any worse. I don’t mind having a gastroscopy every two years to monitor varices caused by portal hypertension. Nor do I complain about needing an abdominal ultrasound every 6 months to watch out for cancers. I treat this as extra time, as extra life with Jennifer and the kids, and life is truly wonderful. I would like to take this opportunity to thank my wonderful doctors, all the nurses, other medical professionals and allied health at the Alfred Hospital in Melbourne. If you are reading this, you know who you are. Thank you. Clearing hep C is the medical highlight of my life.
I understand that the drugs being used to cure hep C are now very easy to take, and practically side effect free. If you are hep C positive and reading this, I can’t encourage you enough to get onto treatment and kiss off hep C. It’s worth it.
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Date last reviewed: 21 March 2018