The Hepalogue

So I’m Cured, What Next?

by The Golden Phaeton on 17/02/2017

It’s been… however many months since I purged my flesh of the Hep C virus. Five? Six? Let’s say six. And I have to say I’m feeling progressively better. It’s definitely an ongoing kind of cure and, who knows? With time I may even reach a level of health that is considered normal.

As a health worker told me recently – ‘It took decades to for the virus to make you as sick as you were, it will probably take some time to get you right again.’ She went on to say that people have been reporting improvements in sleep habits, the ability to work, and clarity of thought.

Very positive words. And I’m pleased to embrace them.

A cirrhotic liver kicking back on a tropical beach

It’s all subjective, I know. There’s no exact way of measuring how good one feels, but I think, on the evidence, I can make some reasonably solid deductions. If I look around my house and compare it to how it was six months ago, I see a definite change. The relentless accumulation of filth has been checked. With the squalor in remission, it has been easier to neaten things up. With things neat, I’ve been able to organise. I’ve been been seeking out and eliminating potential hoarding-kernels and funnelling teen-mess into places where it has the least impact. I’ve been taking pride in the state of the linen closet. And my shoe rack. My guitars wash up in two or three predictable locations, instead of ten. I’ve been drilling down into the true reasons why there are so many more knives than forks. And so many more forks than spoons…

I’m aware that it could all fall apart in a flash, but even my dreary, rusted-on pessimism seems to be abating. I keep hitting positive milestones and, to my eternal astonishment, I don’t seem to be slipping back. At least not that far. And I’ve almost lost sight of the Slough of Despond.

I have no idea if the depression I developed over the years of my hep C infection was due to the disease or to the means I used to cope with the debilitating effects of the disease, or to something else. I’m hoping it will dissipate. I like to think it already has… a bit. I mention this as an example of a possible lingering effect of the disease which we’re just left to deal with post-cure. Another may be a lowered opinion of oneself – acquired over the years through stigma and discrimination.

Sadly, not much effort is being expended on post-cure follow-up. With the huge treatment burden, and enthusiastic efforts towards Hep C elimination, there is a definite tendency for patients to be treated more as statistical results than as people.

I suspect that the majority of us will adapt, applying whatever inner resources we possess to incrementally shuck off any effects of the disease which persist beyond treatment’s end, whether physical or mental. But there will inevitably be others who would benefit from forms of follow-up that do not presently exist.

Yet the mavens of Hep C have not entirely ignored the post-treatment (and late-treatment) landscape and have cast a gimlet eye on at least a few tangible issues.

The most visible of these concerns Hep B. From the fourth week of therapy onwards, a small number of people have been experiencing a reinvigoration of the HBV virus. Symptoms have ranged from mild to ‘fulminant’ and there do seem to have been some fatalities (at least in the US). All the numbers I’ve seen are low, but concern is sufficient for official bodies like the FDA (in the US) and the TGA (in Australia) to release an official warning to consumers and health workers alike.

The mechanism remains unclear but is under investigation. It is suggested that in cases of confection the HCV somehow keeps the HBV in check, but once the HCV viral load is cleared, the HBV suddenly finds itself with free to ravage unimpeded. Any notions of this being associated with drug toxicity have been dismissed.

The likely reason why this issue is only now rearing its head is that patients with HBV were excluded from trials of the new Hep C treatments. During the interferon era, it may have been less evident because interferon works against both viruses.

As for how this will affect people seeking treatment, some guidelines have emerged from the latest EASL convention. First off: universal HBV testing prior to therapy. For those with high viral loads: antivirals which suppress HBV. (No cure exists for Hep B.) For those with low or undetectable levels: careful monitoring until any danger window has closed. Also, it was also recommended that anyone susceptible to contracting the disease should be vaccinated.

‘Vigilance’ seems to accurately describe the current policy in Australia, though this will likely change.

(A very large percentage of Australian PWID have been exposed to HBV. Some are immune/vaccinated, some are infectious carriers, some require continuing suppression therapy, but the vast majority eliminate it after a period of acute disease. Hep B is probably worth mentioning to your doctor if you’re considering treatment.)

Those with cirrhosis who have cleared Hep C remain at high risk of liver cancer and are encouraged to have ongoing twice-yearly ultrasounds. But this is currently the only group who is encouraged to return after their final tests. Some health workers worry about the others, given that their long term prognosis is more assumed than known. Unfortunately, this cohort have completed their jobs for the elimination machine, and are no longer relevant in the ongoing scheme of things.

If you’re in this group, you can always take the initiative yourself, and request your doctor to give you liver function tests every so often. And perhaps the occasional fibroscan, particularly if you consume alcohol. That way you’ll be as prepared as you can be for any new surprises down the track.

In the meantime, if you’re experiencing anything like what I’m experiencing, enjoy it, nurture it. Be aware that your liver may need the care deserving of a princess for the rest of your life, but don’t let it get you down.

In the words of someone I would rather die than name – be alert not alarmed.

The Golden Phaeton

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