“I am a Hep Hero because I hung in there with my hep C meds and cleared the virus, despite hideous side effects and 2 rounds of treatment. (This was before the new meds were available.)”
“I saw the best minds of my generation destroyed by madness…starving hysterical, naked…dragging themselves through the streets at dawn looking for an angry fix, angel-headed hipsters burning for the ancient heavenly connection to the starry dynamo in the machinery of the night…who, hollow-eyed and high, bared their brains to Heaven and, staggering on tenement roofs, saw angels illuminated…” (Alan Watts).
After having the hep C virus for 38 years or so, I finally fronted up for hep C treatment in 2011. I had had enough of feeling weary all the time and generally under par regarding energy and enthusiasm for life.
I was paying dearly for my wild counterculture hippie youth. The legacy it left me was this awful virus. Genotype 1a is particularly tricky to clear, however it was finally cleared in November 2013. I was directed by my Gastroenterologist to stay on the medications to the bitter end. I was on triple treatment the second time around, via interferon, ribavarin and boceprevir.
In November 2013, the end of triple treatment meds seemed a very long way away! Another gruelling 8 months. I was on Ribovarin, Boceprevir and Interferon.I was experiencing side effects that really knocked me around, emotionally and physically. My hair fell out, my skin itched most of the time, I lost weight and felt nauseous at the thought of food, my eyes watered and itched constantly (and still did for another two years) and my blood count went way down the scale developing dizzy spells and severe Anaemia.
I had to have a blood transfusion 6 months into triple treatment as the meds I was on were ‘kill it or cure it’ drugs, similar to those used in chemotherapy.
Luckily for me, my liver is not as damaged as it could have been. Only 6 out of 20 on the machine that goes beep! For this I am grateful. However, it’s all good now. We’ve cleared the virus! Cause for celebration…(and my health team of doctors, the hep C nurse, my ashram buddies, U3A and a wonderful Shiatsu and massage healer in Creswick). And of course, the Yoga ashrams where I lived for 5 years.
At the Rocklyn ashram I did ‘seva’ (voluntary work or service) in the kitchen there for several months during my recovery, cooking meals for the ashram visitors until I got too exhausted to lift heavy cooking pots anymore. I was also having dizzy spells. I have begun to go to meditation and yoga sessions there again as it is only 15 minutes away. Laughter also played a large part in me recovering my ‘happy for no good reason’ disposition and peace of mind.
The new hep C meds are a ‘walk in the park’ when compared to the meds I was on – and this is good news. I applaud anyone seeking treatment.
It took me a couple of years to be 100% back to normal. I began having Vitamin B shots and they worked wonders. I am not now fatigued every day, my eyes have stopped watering and itching and my spirits are a lot better too. I am glad that I finally pushed through my fear and paranoia and social phobia, to pick up the phone and call the Hepatitis Victoria Helpline. Joining U3A and also a local Folk Club has helped enormously too.
Today I am grateful for all the support I have had and am still receiving. This (and learning how prevalent hep C actually is) has motivated me to move forward and I became a Hepatitis Victoria Public Speaker and Community Advocate. Pay it forward as they say. I also wish to contribute towards removal of stigma related to viral hepatitis, including self-stigma.
I can’t but WE CAN beat hep C! You too can feel ‘a part of’ instead of ‘apart from’. Just pick up the phone and call the Hepatitis Victoria Infoline. The new meds have made it all so much easier. Still many people to reach though. And many relapses. We can offer a hand up as many times as needed.
Kate’s message to others:
Considering that liver cancer is the fastest growing cancer in the Western World, I urge everyone living with hepatitis C to bite the bullet and front up for treatment.
I will finish with a quote from Margaret Mead: Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.