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!



If you can't wait to hear from me [!], 'Like' my Facebook page here, or follow me on Twitter here

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.

Where's Wally?

'Most people who don't know you will think you're dead' said one of my best friends during a dinner party last weekend and although I felt it was a little dramatic, it did make me feel very guilty about the way I abandoned this blog so suddenly, leaving most people out there without any sort of closure as to my fate!

I hope no one is actually holding their breath for me but just in case, let me assure that everything is fine on my side.

As I mentioned on my last post , my treatment didn't work second time around either and I was advised by my doctors to stop it. I've seen the doctors since then and they've assured me my liver is coping well with the viruses and some new drugs are being trialled as we speak so hopefully in a couple of years I'll be able to try a new treatment. Until then I just need to take care of myself and allow life to go on.

And I have! Apart from the temporary numbness after the bad news, I haven't let this setback affect my life at all. I completed the marathon as promised [click here if you don't believe me!] and with your help managed to raise a grand total of £2328.97 for charity. I had a great summer and I'm looking forward to bigger and better things in my life.

Living with Hep doesn't have to be difficult and since Mr B and Mr C are sticking around for a while, it seems, I'm going to ensure that they affect my life as little as possible.I won't make any promises about the blog this time but I am keeping my eye out for helpful info that I can start indexing here again and I also have a few more ideas for the immediate future of this blog so look out for that.

In the meantime, if you miss me too much, follow me on twitter .

Stay safe and remember to get tested!

Still runnin'

'1000 visitors to Prometheus!' greeted me the message in my inbox this morning. In little over 8 months, writing posts about disease and drugs, with no viral campaign or celebrity endorsement and next-to-no respect for deadlines, here we are: a 1000 visits to this humble blog. A milestone of sorts and yet I couldn't help but feel guilty about the whole thing. It's been over a month and nearly 120 visits to the site since my last post and I feel that I've somehow been neglectful not only of this blog but the loyal readers who have been with me in one way or another since the start of this experience. I’d like to apologise for that and try to offer the following as a way of explanation.

I mentioned in my last post that I was waiting to hear from my doctor as the treatment didn't seem to be working for me. When I received the phone call, it was indeed the news I didn’t want to hear. The viral load in my body had gone back to the pre-treatment levels which effectively meant my treatment was just not working at all and I was adivised to comlo off the treatment straight away. Not the best piece of news as you can imagine! I found all of this out over the phone [much to the chagrin of my loved ones] and I haven’t seen the doctor since then. I have an appointment on Friday but regardless of anything they might say, I now know I’ll have to wait at least a couple of years for a stronger version of the treatment to come onto the market. In the meantime, we might try and see what we can do with the Hep B but I’ll find out a lot more on Friday and I’ll be sure to post. Promise!

I've been drug-free for over a month now and needless to say it has been a period of reflection and big changes. I'll be sure to share this with everyone on a future post.

On the marathon front, things are going well and perhaps one of the very few silver linings from this situation is that I can now train without having to cope with the side effects of Interferon. Mind you, the withdrawal effects were quite strong and it's only in the last few days that I’ve felt like I’ve gone back to being pretty much me pre-Interferon. Now I ache and I’m very tired but it’s all down to the running!

Before I leave you let me thank you again for helping me to get this far and even though we didn't get the result we wanted this time around, the battle continues and I don't give up easily!

See you next week.

Peace!

Hepatitis can fight back too, apparently...

I've been feeling really guilty. It's been far too long since my last post and some amazing things have happened since then. I announced my intention to run a marathon in that post, asking for people's support and the response has been amazing. It was overwhelming to see how supportive and just how brilliant people can be. It was beautiful. I had a well deserved 3-weeks break with nothing to do but sit at home, eating biscuits and watching bad television. Needless to say, my batteries were nicely recharged. I had a great Christmas and a very fun New Year's Eve. My training for the marathon is going alright. I've given up smoking. In short, a great load of good, positive things have happened in my life since my last post.

However, 2008 being the kind of year it was, left me with a little present very much running along the lines of the one I received right at the beginning of the year. My doctor informed me right before Christmas that the treatment seems to have stopped working [based on test results from 13 weeks into treatment], meaning my recovery has reached a plateau and there is a very real possibility now that the last 6 months have been fruitless and the doctors might suggest I stop the treatment as it would make no sense to keep forcing my body through such a demanding course of drugs.

So, this news bookended 2008 for me and resulted in the long period of silence unwillingly imposed on this blog. I've really struggled to commit words to paper and even now I'm struggling to flesh out this post. I had some new tests taken just before Christmas and I should hear back from the doctor next week. I felt it was the right time to update the blog, even if I didn’t feel much like writing. Hopefully, next week I’ll have some better news and a much better post for the blog.

In the meantime, thanks again to everyone who’s been so kind and supportive in the marathon push! Your help, thoughts and generous donations are very much appreciated.

Peace