Month by month, the various scattered parts of my life seem to be gathering into a recognisable whole. I'm not happy today, but at least I'm not miserable and in bed. I wasn't particularly happy yesterday, but at least the house was clean and I had some idea of what the looming week would hold.
I’m loathe to use new age buzz words, but 'rebirth' is about the only term I can think of to properly describe what’s happening to me at present. I'm physically healthier for sure, and more inclined to work on my physical health (with various degrees of success). But most of the change seems to be happening in my psyche. My head has been cast adrift from the diseased mooring that was hep C, and suddenly the world is full of options – most of which I would not have dared consider given my previous ramshackle condition. At times, I even feel a little unhinged … but in a good way.
Only after the departure of hep C did I realise how large a part it had played in my life. How it had defined my identity, even my personality. Years of abnormal liver results, necessary nanna naps, the perennial brain fog, and a swath of symptoms so vague that they only revealed their existence when the disease was gone.
I recorded an interview last week with another hep C survivor, and it really was astounding how our post-treatment experiences matched across the board – although our personal journeys had been very different. She was cured a couple of years before the new treatments became widely available and her experience may provide something of a portal into the future for the rest of us, as well as some alternative ideas on liver health.
- Where do you think you picked up Hep C?
‘Well… Through my late teens and early twenties I experimented with lots of different drugs. I was a sporadic injector and that’s how I must have got it, though I never shared a needle - at least not consciously…’
'This was the early 90s, I'd only just moved to Melbourne from country NSW and I was very naïve. I hadn't heard of hep C. But I do remember picking up some government information that said that if you clean the syringes in, um...
‘Yeah. Or vodka.’
- Vodka? I missed that bulletin.
‘They said white spirits would sterilise used needles if there was nothing else available.’
- The 2x2x2 thing?
(Back in the day, when fresh needles were less available, there was government approved advice on the use of bleach in sterilising used syringes. Two flushes with water, two with bleach, two with water. You don’t hear of this much these days and NSPs tend not to bother with bleach - but in extreme circumstances it remains an accepted option.)
‘That was the literature available at the time, but I didn't have much to do with that end. My boyfriend was in charge. Syringe availability was pretty low, even in St. Kilda where we lived, so we kept the syringes with our names marked on them.'
- How did you do that?
'Just with a pen...'
- Did you get, like… sticky-tape and a little rectangle of paper...?
'Yeah, or a little bit of bandaid... But I think somehow there must have been a mix-up. That particular boyfriend was co-infected with hep B, but I never caught that. Go figure. No idea. So really I can’t tell you exactly how I got hep C.’
- Every disease is different, I suppose. Perhaps the circumstances were that little bit more amenable for the hep C...
'I was a vegetarian at the time. I was pretty run down and getting sick a lot.'
- Because you were a vegetarian?
'I wasn't doing it properly. I was young, not long in Melbourne... '
- So the drug use was happening in a relationship context?
'Yeah. The typical gender pattern of injecting drug use. I've read articles about it. Often it's the middle class boy who will go out, get the drugs, then administer them to the lower socio-economic or country-regional girl…'
- Interesting... So they've done studies on that kind of thing?
'Yep. Gendered patterns of drug use.'
- I can't say it rings all that true for my drug-based relationships. Perhaps I was just too lazy to get up and go meet the dealer...
At this point the conversation is interrupted by the horrendous yowling of a cat.
- That's... Marigold?
'No. That's Daphne.'
- Alright. So you figure you caught hep C during the early 90s. When did you actually learn that you had it?
'Pretty soon after. It hit me acutely. I got a really bad flu, and I'd never had the flu before coming to Melbourne. I was very very sick. My eyeballs started going yellow. Then the rest of me went yellow. Then my hair started falling out...'
- Wow. How much of it?
'About... a third? I had no idea what was happening to me. I went to a naturopath in Acland St. who suggested I might have something wrong with my liver. Then I visited a dermatologist to have something burnt off my skin. He ran some tests and told me I had “a bit of a flu on my liver”.'
- How quaint. And Victorian.
'Yeah. So, he'd actually picked something up, but didn't bother doing any further investigation. It wasn't till later... I'd been to a wedding and gotten myself really drunk. Afterwards I was horribly sick and feverish and I went to a GP in Nth Fitzroy. She ran some tests and told me I had hep C. And that was basically it. No counselling, no advice. Nothing.'
- So, it's 92. They don't know much about hep C and there certainly isn't much treatment infrastructure around. Interferon is becoming available but it's a shot in the dark. How did you respond to the news?
'I was extremely distressed. And angry - I thought it meant I couldn't ever have a child.'
'Yep. I was clueless
- So no one filled you in as regards the actual nature of the disease? And its potential severity?
'I was told nothing. They just referred me to St. Vincent's where I saw an old doctor who wanted to put me on interferon. I had a different boyfriend by that stage, and it was on his recommendation that I refused the interferon. He said – don't do it. And I didn't do it.
- Was it just on his word? Or did you look into it a bit?
- May I ask what genotype you were?
- So you would have been looking at about a 20% cure rate...
'Uh-huh. I also remember seeing a letter which that specialist wrote to my GP... a different GP... “Blah Blah is a twenty year old woman with a history of injecting drug use and 'x' number of sexual partners...”'
'That's where it started. That's where I first glimpsed the stigma. After that
I just disengaged from the system and went alternative. I started visiting a natural therapy centre in St Kilda which was attached to a drug rehab...'
- I'm guessing Windana?
'Yeah. Windana. I got better support there, and information. I embraced Chinese medicine. I curtailed my alcohol use - not that I was drinking much at the time. And I did my best to stay off drugs, with mixed results...
'But, still, when I went to other doctors about the hair loss and other symptoms, I was basically dismissed. I was dismissed by everybody in the mainstream system. They were like - but you've got a full head of hair! And I was like - I've lost vast amounts! And they were like – No! Hepatitis doesn't do that.'
- You felt certain it was the hep?
'Yes! It started during the acute phase. It was probably the shock to the body.'
- I lost a huge amount of hair when I was on interferon. Months later, I was still finding masses of it under my car seats...
'And I noticed something with my skin. If I got a little cut or something, it wouldn't heal as fast as it used to. That was one of the first things I noticed. That and the ridges on my fingernails.'
- I was hoping my ridges would disappear once I was cured...
'Mine haven't gone either.'
- I've been reassured on facebook that it's an age-related thing.
'I got them at twenty. Right when I got hep C.'
- Mine started when a drunken Russian slammed my little finger in a carriage door on the Trans-Siberian Express. It was only when the ridges started appearing on other fingers that I blamed the hep C... So, with the Chinese Medicine... Did you do the whole thing? The whole brew up of horrible, unidentifiable...
'Totally did that. When I could afford it. For twenty years. Actually, the first Chinese doctor I saw told me he could sense I'd had a hard life and gave me the herbs for free... What a nice person he was...
'I must have tried every natural and alternative therapy there was. I became very interested in all of that.'
- Could you describe some of it?
'Oh... various forms of psychotherapy, reiki, acupuncture, shiatsu massage, aromatherapy, Feldenkrais, yoga, swimming, basic exercise, kinesiology, NLP (Neuro-Linguistic Programming). I took milk thistle for 22 years and I really think that helped…'
- I guess, in the absence of any bona fide medical treatment, a lot of people explored alternative routes. I know I did...
'And “The Journey”.'
- Is that like The Secret?
'No. It's The Journey.
- Is it related to The Secret?
- Is it... more legit?
- Or less legit?
- So, moving on. If you hadn't had hep C, do you think you would have embraced these alternative modalities?
'Probably, but not to the extent I did. As a young person I was interested in a lot of that stuff. Carlos Castaneda. The Orange People. Pot smoking. I was interested in different ways of being, different experiences, ways of thought... but it sort of changed when I came to the big city…
- The big secular thought machine...
- Over time, how did you feel the impact of the disease?
'I felt very tired. Very often. I'm kind of grateful I caught hep C at the age I did because my youthful energy helped propel me along. I hate to think of what it must be like for someone in their forties…
'What I remember most is the tiredness. I might be having a good day, doing a lot of things, and then suddenly it was like someone had pulled out my batteries. A sudden crashing fatigue.'
- I've heard that a lot from people.
'It felt like I went to sleep and then didn't wake up again until I was cured. Every morning I'd wake up to this thick head…'
- Brain fog?
'Brain fog. Every single morning. For twenty something years. And it affected my mood. I became irritable. And that affected my relationships, my work... It affected everything.'
- Do you feel, because you had hep C for so long, it was difficult to tell the effects of the disease from those of ageing?
'People would constantly be telling me it was just ageing. But because I was a young person, I think I could tell the difference. I had to have naps at about two in the afternoon. I'd just crash. I'd get my son from school, then I'd lie down and read while Play School was on…'
- How old were you when you had your son?
'Twenty-five. And on top of that, somehow, I still managed to bumble through and finish degrees and hold down jobs. But now, when I look back, through my work, my websites... I can see the effects of the illness.'
- So you always worked?
'Yeah. Though in the early days I was a student. I just did what I could to keep my life and my health together. I was very diligent with my diet. Remember that liver-cleansing book?
- I do. Sandra Cabot. It was more of a liver-cleansing bible.
'Everyone got into that. Hospital liver-clinics were recommending it ...'
- She turned out to be something of a charlatan, didn't she?
'Yeah, a fraud.'
(TGP- Though there was nothing inherently wrong with the sensible eating plan described in her book 'The Liver Cleansing Diet', Cabot went on to create a New Age health business trafficking in faddish, often dubious products and ideas.)
'I kept up with the alternative stuff, even though my friends and doctors assured me it wasn't going to make any difference to the disease itself. And from time to time I'd attend a liver clinic, first at St Vincent's then The Alfred, but I found them too patronising, too condescending – though I’d like to think they're different now...
'I'd see people in the waiting area, and they'd be like - what's your ALT? And I'd go – 90, whatever. And they'd go - mine's 55. And I'd go - I'm just not worrying about it. And they'd go - oh, really...
'It just wasn't me. It wasn't my identity.
- Did you bump into people you knew? In those waiting areas?
'Yeah, but they weren't really my friends. They tended to be a lot older, and from a different scene. I'd stopped taking drugs, and was trying to avoid having much to do with people for whom drugs were still a part of their lives. It was how I moved forward. How I sought to build more into my life.
'Eventually, I gave up going completely. I left the system. I'd see my GP, who was very supportive, and who supported me in avoiding interferon.'
- So... you didn't want to burden yourself concentrating on a condition you couldn't do much about? Best to just be healthy and forget about it?
'Basically. I'd still get the odd ALT result. They were always bad, always high.'
- Over a hundred?
'Often. I think the highest I had was something like 396. That was after I'd fractured a bone in my foot.'
- Which would probably have contributed…
'That's what the nurse said. I guess my average was about 110, but paradoxically, when I had a FibroScan down the track, there wasn't much liver damage.
- When did you first hear about direct-acting antivirals?
‘Years later. Through a close friend who was co-infected with HIV and Hep C. We’d talk a lot about our health and he gave me a heads up on these new drugs in the pipeline. But nothing happened for a while, though I did keep my eye open for new research.
‘That same friend convinced me to go back and visit a specialist. These were the mid naughties, and after seeing her I’d just want to go out and get drunk...'
- So someone in your life was encouraging you to keep open a line of communication with the health system?
‘Yeah. But this new specialist was just wrong. She really stressed me out, made me feel really scared. She was just the wrong personality type.
‘Then, through a friend of mine who worked in medical research, I found another specialist, and he was fantastic. He was calming. He was the right personality type. And he bulk-billed in the private system.’
- This is still prior to the arrival of DAAs?
‘Yes. And it was through him I that I really became aware of them, that there might be a real cure on the horizon. I started mailing doctors and academics overseas in an effort to find out when they would be available, and how much they would cost.'
- That’s really proactive...
‘I tried to get on drug trials - even American drug trials. I was listed for some, but I was always way down on the list. I wasn't sick enough, according to them...
'I concentrated on the UK because it seemed as if the drugs would be released there first, but it turned out to be America. Then, through my specialist, I got in contact with an ex-pat Australian doctor in San Francisco...
- Which drugs exactly had become available?
- Before Harvoni?
‘Yes, this was before Harvoni. I investigated the legalities of importation and learnt that you can bring in up to three months’ worth of medical treatment for personal use.’
- And, the obvious question. What about the money? These drugs are very expensive.
‘I was fortunate enough to have... benefactors. I was really lucky.
‘So my contact in San Francisco wrote the script, sent it to the local Walgreen’s Pharmacy, and they posted it here, and I just took it.’
- I’m assuming your specialist here was in the loop?
‘Completely. At that time they were still recommending ribavirin be added to the mix. Apparently it increased the cure-rate by 3% or something. I used it for six weeks and had some dreadful side-effects.
- What kind?
‘Really severe chemical depression. And anger.’
- Breathlessness? Anaemia was my problem with ribavirin.
‘Yes, I became anaemic. I actually had to have an iron infusion.’
- Your specialist took you off it?
‘Immediately. I contacted the hospital. It was after-hours and initially they were reluctant to page my specialist, but I let them know which drugs I was taking, and that I felt like I was falling down a mineshaft. They were very understanding.
'The specialist told me to throw the ribavirin in the bin. It took about three days for the side-effects to recede.'
- For the record, I was treated by that same specialist and I’m in total agreement with your positive review. He's very calming and reassuring. You tend to really trust his judgement and, what’s more, he’s open to all avenues of possibility.
So, after commencing treatment, when did you first notice a difference ...?
‘I can remember to the day; it was a Monday morning. I opened my eyes and it was like – gone. It was something truly amazing.
‘That day I went to meet a friend for coffee. I told her - I think it's gone, and she said - I can see, I can see it's gone. That was just amazing.
‘But I still kept it really low key until I got the official results.’
- In medical terms, how did your treatment progress?
‘I was clear at my four week blood test. My ALT was 29.'
- What do you think your friend saw in you that day? What change do you think she saw?
‘It was something about my eyes, she said. They were brighter. She mentioned an alertness… I mean, I guess I'm a reasonably bright person anyway, so people who don’t know me well might not have noticed the difference...
'There was an employer… I’d come to her seeking a reference and happened to disclose my medical history. She was surprised. She said she would never have known. On the other hand, there were people in my immediate family who told me my personality had completely changed.
‘It was a lightness. A brightness...
‘The energy levels I have now are … hard to believe. I constantly wonder if this is what it’s like to have normal energy… I used to get so very tired...'
- I’ve found that it’s a bit of an up and down thing. One week I’m feeling marvellous, the next not so marvellous. But there’s a general upward trend, and I never have those weeks when I feel close to dead.
‘I’m getting these increasing increments of health … At deeper and deeper levels... And it’s reflected in my behaviour. When you have a serious long term illness you adapt your behaviour to cope, and since I’ve been freed from the disease I’ve felt myself unravelling those layers, finding a path back to normal. I think it's related to what they call neuroplasticity.'
- I sympathise with that one hundred per cent.
‘Layers upon layers. Of health.’
- It's quite incredible. Is this... this is rosehip tea, is it?
‘No. Normal tea.
- It doesn't look like normal tea. It’s... red.
‘You poured it into your wine glass.’
- Oh… Okay, my mistake. Where were we?
‘If you've had a disease like hep C for a significant portion of your life, it becomes part of your psyche, part of who you are. So, when it leaves your system, not everything happens at once, there’s slow adaptation over time.'
- The traces it leaves aren’t just in your liver, but also in your head. And they take time to heal. What’s your healing process been like?
‘Well, we talked about the initial high, and the associated surge of energy… For me that surge flattened out after about six months. Then it mounted and surged again, and then again, in three to six month increments. At some point I developed an inner awareness of this pattern. I was thinking, okay... I’m physically well… my post treatment FibroScans show absolutely no damage… no scarring... so I figured my liver was pretty much out of the frame. Anything left had to be in my head.
'But my specialist had told me that that it can take up to two years for the liver to fully heal, so I decided to start taking cannabidiol oil, to hasten the process of regeneration. It's said to have great effects, particularly with the the liver. I highly recommend it.'
- How long since you've been cured now?
Over three years...
- Well by now that CBD oil must be working on the last bit of the last one percent …
'Possibly, but remember that FibroScan results are never 100% conclusive… And also, I heard the other day that they're not going to to know for another five years whether there'll be any long term effects from the DAAs.'
- Bad ones?
'It's unlikely, of course...'
- So we all might come down with some incredibly rare cancer? Or become zombies?
'Well, at least we will have had a few good years, no? Got a lot done.'
- I've been experimenting with something called cranial electrotherapy stimulation. It's supposed to help with mood disorders and insomnia. The electrodes run from your ears to a device called an Alpha Stim which sends a pulsed microcurrent through your head...
'I must look that up...'
- Thing is, it actually seems to work. Though I do worry about my brain in the long term. The US military is using it, apparently, but that doesn't say much for its safety...
So, any last words to add on the hep C front?
'Did I mention how much my gums have improved since I've been cured?'
'Well, I've had a very noticeable improvement in my gum health.'
And here, on the twin topics of gum health and cranial electrotherapy stimulation, I'll end another tale of a life rescued by the new hep C treatments.
The Golden Phaeton