My Mount Everest - Page 3
From Griffith REVIEW Edition 17: Staying Alive
© Copyright Griffith University & the author.
Written by Meera Atkinson
THE HEPATITIS C STORY IS NOT all doom and gloom. Even though there is clearly more work to be done, it's important to recognise the improvements. Many who choose not to undergo currently available treatment manage the virus and symptoms successfully through lifestyle change and alternative and complementary therapies (though these measures are not generally thought to be capable of bringing about complete viral clearance), and most people with Hep C live a normal lifespan. Although Magdalena Harris is correct in identifying a continued need for increased government and social support, Australia has been and remains at the forefront of the fight. We were one of the first countries to initiate harm reduction programs such as needle exchanges when AIDS appeared, and those programs have helped reduce infection rates. The government also funds research and subsidises treatment. Unlike the United States, treatment is offered to Australian citizens on an equitable basis.
Week 24: I just got a call from a friend who has just found out she's positive. She only ever used a needle once – let a lover shoot her up with cocaine twenty years ago. One shot. That's all it takes. She wants to know what I know. She's a geno 3 and thinks she'll do treatment. I couldn't lie and tell her it's been easy, but I don't want to discourage her either. The fact is I'd do it all again for a chance to be free of Hepatitis C. I have spent six months holed up and shut down, a machine whose only purpose is to withstand the drugs and deal with the curve balls they throw me. I've finally reached the end and the prospect of coming back to my life and myself is exciting and emotional. I injected my final shot last night, sat down to dinner, and burst into tears of grief and relief. I have been crying ever since. Recovery from treatment might be quick and easy for those who breeze through, but I suspect for me, and others who come off the battlefield limping and bleeding, it's more likely a long and rocky road. I feel too, regardless of whether I relapse or stay clear, my life is about to change radically. Treatment requires some of us to confront our selves and our lives so deeply it can facilitate major internal and external change. The very act of choosing to undergo it signalled for me a new age, a decision to claim the life I want.
For those who meet their Waterloo with current treatment, the war is not yet over. New drugs are being developed and tested; the most promising among them are Protease Inhibitors (PIs) and trials will commence this year in many countries around the world, including Australia. PIs promise to address the discrepancy in response and SVR rates between the genotypes.
Then there are the inspirational personal stories. Many who get the SVR say they experience a new lease on life. A Christian mother of seven has become a public advocate for people with Hep C and a "Hep C Chaplain" despite having been a "non-responder" to treatment. Another mother completed treatment successfully and is now drawing on support from the online community as she guides her three-year-old child through treatment. There is the Sydney woman in her seventies – the oldest in the country to undergo treatment – who cleared, and the geno 2 woman with cirrhosis who, though forced off treatment after nineteen days due to overwhelming side-effects, still managed to get the SVR.
Six months post-treatment: I have waited six months for this news, for confirmation of the golden SVR. They tested me at one-month post-treatment (still "undetectable") three months (still "undetectable"), and then at six and then the wait of more weeks after that. When the nurse told me that my one-month post treatment test was "undetectable", I burst into tears. I had no words to tell her how much it meant to me and what I'd gone through to get it. In the months that followed, I slowly and gradually recovered and focused on rebuilding my life but the thought of relapse was never far from my mind. If I felt a twinge of discomfort near the liver or felt tired one day, I wondered if the virus had returned. I did notice an unprecendented increase in energy. I got through most days without even thinking about taking a nap, and I dared to hope that this was the "clearance energy" those who stay undetected speak of. I realised how it is that noninfected people pack so much in. For years I watched them go about their busy lives – working, raising children, going to the gym – in awe and envy, and now I seem to be like them, yawning with the tiredness of "modern life" but not hitting the wall at 11am with the overwhelming fatigue of Hep C. Clearing the virus can be confronting. It demands redefinition, the reframing of the negative and self-limiting self-image that chronic illness can create. Awaiting the results I considered the implications of no longer hosting this virus that has been my internal companion my entire adult life. I prepared myself for news of a relapse but I knew no amount of preparation would make "detected" anything less than devastating. My appointment to see the nurse was booked in but I knew the results often came back early. They don't like to give them over the phone in case it's "bad news" but I couldn't wait. I phoned the nurse and begged her to check. I sat on my sofa and forgot to breathe as I listened to the sound of her clicking into my file on the computer. "Your results are back," she said. I could tell a smile was breaking on her face as she spoke: "Hepatitis C undetected." ♦