Let’s crack open the bubbly!

What a hard couple of weeks it’s been.

Let’s not beat around the bush, my poor body is taking a worse battering than anyone could have anticipated. Constantly tired, I can’t remember the last time I felt I had enough energy for anything. I went from marathon-fit to ‘panting-breathless-after-a-five-minute-walk’ within a couple of months. The metallic taste of bile hasn’t stopped for over 10 weeks, and nausea is becoming second nature now. Blinding headaches, insomnia, and nosebleeds have joined the party. Other side effects have also come along but I’ll save the graphic details for anyone who asks over a cup of coffee.  Reluctantly, I’ve even have to admit defeat and follow my gastric nurse’s advice to take an extended period off of work. Oh, yeah, did I forget to mention I’m anaemic now too? It’s really no longer about recharging my batteries but about making sure my body doesn’t go into full meltdown.

So, yeah, it’s been a hard couple of weeks. Health-wise, the hardest of my adult life ever, really.

And yet, I’m going to break my teetotalism today and have a bit bubbly to celebrate. Why, you ask? Well, at week 10 (this current week) of my treatment, my liver function test result is 36 – the first time it’s been within ‘normal’ boundaries in nearly two decades. My poor liver is having  a well deserved break. And that’s not even the good news. I’m typing this after getting off the phone with my gastric nurse who called me with the results of my viral load for Hepatitis C and they’re ‘undetectable’. Allow me a moment for a little cry here. Let’s say that again because it bears repeating, my bloody Hepatitis C results have come back negative! At week 10! It’s exactly the trajectory we wanted them to take if this horrible treatment is going to work but to be honest, I never actually expected it to work this well. Two decades of false starts and heartbreak just made me a bit cynical. But having said all that, for the first time in my adult life I’m negative for Hepatitis C as we speak. Very happy days indeed!

This all means the treatment is working beautifully and my chances of actually clearing my Hep C are good. I’ll stay on the treatment all the way until the bitter end now (Spring 2014) and we’ll hopefully not have a ‘positive’ viral load result ever again. One can only hope.

So, this is brilliant news and I’m so happy I might burst.

I’m going to ignore the fact that my gastric nurse has asked me to come in for urgent blood test with concern in her voice after I mentioned the nosebleeds. I’m going to ignore the guilt about having to take time off work. I’m going to pretend for one day that I’m full of energy and have a little party with my wife and son. I’m going to swallow my pills like they’re fudge and ride the nausea train happily. Let’s crack open the bubbly. Cheers!

Peace

  

Since I've been asked before, please feel free to share this article wherever you want. The more people who know we can beat this crap, the better! I'm over on Twitter as @gatulino and I'm using the tags #hepatitis #wecanbeatit



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Friday

Hello,

Thanks very much to everyone for all the lovely messages of love and support. Things aren't getting any easier on my side, I'm afraid. However, instead of another post whining and complaining, I thought I'd try something different this week. Below is a little insight into a day in my life, drugs-wise.

I've got a big milestone coming up (Week 8 of treatment) in a couple of weeks, so I'll do a more 'traditional' post then.

Till then.

Peace,

E

Midnight: Boceprevir, we meet again [Pill count: 4]

8am: The Boceprevir fairy awakes me. I must take 800gs of it (4 pills) every 8 hours, otherwise my body might become resistant to the drug. Ah, the joys... [Pill count: 8]

 

 

10am: The first of my two daily doses of Ribavirin. [Pill count: 11]

4pm: Boceprevir again - here comes nausea! [Pill count: 15]

7pm: Tenofovir, my little Hep B daily reminder for the next few years. [Pill count: 16]

8pm: Ribavirin again. Yum [Pill count: 19]

10pm: My weekly Interferon injection 

Midnight: Boceprevir, we meet again [Pill count: Reset]

Onwards...

I've now been on my new Hep C treatment for nearly a month. And it hasn't been easy.

I'm drained of energy, constantly tired. The nausea after my morning and evening pills dosages is only getting worse. Insomnia is slowly creeping back into my life. The bruises on my stomach growing ever darker. My beloved runs a thing of the past. Social visits being cancelled all over the place. Working days spent instead sat at home, feeling slightly sorry for myself. So, I won't lie to you, it's been hard.

Now that we've got that sorry business out of the way, on to the good stuff. My liver function tests results - usually hovering over the 150 mark over the last three years (anything over 40 is usually considered abnormal) - have dropped to 54. That's the best they've been in a decade! If nothing else, my poor liver's had a bit of a breather so that's good news.

I'm seeing my gastric nurse this Friday (19th July), and we'll be starting on the Boceprevir - the very reason why we're going through this all again. I understand it'll be quite hard for a couple of weeks at least, but the truth is we don't really know what's going to happen. This cocktail of drugs is fairly new - My very, very experienced and wonderful gastric nurse tells me I'm only the second patient with both Hep B and Hep C going through this treatment in her care ever. And the other poor sod is only a couple of weeks ahead of me, from the sound of it.

So, onwards we go into uncertain territory. It's been hard so far, and no doubt it's about to get harder. But I'm still hoping - hoping this is the start of a Hep C-free me.

I might not be sleeping, but no one said I couldn't still dream, right?

Peace,
E

And whilst you're here,  Word Hepatitis Day is coming up... Please, get tested!



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New Beginnings...

One of my favourite writers once wrote that history has a knack of repeating itself, first as a tragedy and then as a farce. What the lovely bearded fellow forgot to add is that sometimes twice is not enough for history, and like a Sysyphus-deflating rock, history rolls heavily down the hill once again – no longer a tragedy, or even a farce, but now simply a monotonous expectation.

It’s been a while since I posted here. A mistake, really. Reading back through some of the older posts was very helpful in reminding me what undergoing treatment for Hep B and C was like, and it was nice knowing that people had come along for the trip whilst it lasted.

And it was a mistake because there have actually been loads of developments in my life. I’m a little older, perhaps a little wiser, married, and father to a wonderful boy, blessed with a loving family who has kept me going strong, in spite of the many setbacks.  

But perhaps the most important development in terms of this blog was the fact that I started treatment for my hep B about a year ago. I’ve been taking a daily dose of Tenofovir – a drug most commonly associated with HIV treatments – and the treatment seems to be doing the trick. My viral load for Hep B is at the lowest it has been for nearly two decades, which is great news. Tenofovir is not a cure, however, so I’ll have to keep taking the little blue pill every night for the next few years.

There are some side effects to Tenofovir, the one that’s been more prominent this year being the constant state of tiredness – also a common side effect to new parenthood, I grant you.

So, why the sudden blog update, I hear you ask. Well, my consultant has suggested I have another go at Hep C treatment too, and I must say it was difficult to say no. As always, if there is even a little chance of clearing these nasty bastards, I must take it with both hands.

I’ll be undergoing another whole year of treatment with Interferon – the same drug I’ve already failed twice on – and they will add a new one (Boceprevir) at Week 4, which will hopefully make a difference this time around.

So, here we are, Week 1 once again. I had my first injection on Friday, I’ve been taking six pills a day since, on top of the one Tenofovir. The familiar tiredness has set in. Nausea has been an unwelcome addition. A little bit of gloom overall, if I’m honest.

But, also, hope. They can’t take that away from us. So, here we go again. I’ll blog about this new stage of the journey regularly.

Peace.