NHS choices

Patient blog 

Philip Robinson from Bowburn, Co. Durham, was recently diagnosed with hepatitis C. In his last blog entry, Philip was hitting the midway point in his treatment and waiting for the results of tests to confirm whether treatment was working.

 

February 2010

I’ve been on treatment of pegylated interferon and ribavirin for 24 weeks now. I’m pretty sure that this is as about as hard as it’s going to get and I know that if I don’t go through and finish the treatment that in a few years time I’ll regret it.

When I first started treatment, I really wasn’t feeling very well at all. It was a bit like giving yourself the flu and at the beginning I was spending most of the time in bed. I had uncontrollable muscle spasms and aches and pains, but I got used to it - it’s really amazing how your body can adapt.

For sure, some days are better than others; it’s really up and down. How I feel when I first wake up is a pretty good indication for how I’m going to feel for the rest of the day. I inject with interferon on a Sunday night, so on Monday and Tuesday I know I’m going to be feeling totally wiped out. It does mean that I start to feel better towards the weekend though so I can still have some sort of social life!

The problem is that you just don’t know when you’re going to feel ill so I take it one day at a time and don’t make any major plans. Yesterday the treatment was really kicking off and all I managed to do was make myself a cup of tea and toast. Bad days are bad days and you come to accept that. Then today, for example, I’ve been feeling OK and made it down to the shops and back.

I used to be really fit, running, mountain biking and playing football. If you ask any of my friends, I was the one to keep up with. At the moment if I’m having a bad day I can find walking down the road a challenge. I’ve lost nearly 10 kilos since I started treatment and can feel very weak and get tired easily. The treatment has taken away my appetite completely so as much as I can, I try to eat small meals and keep my fluids up.

The boredom of staying at home can really get to you. That, and the money, is making me look forward to getting better and getting back to work. I imagine that if you did a job which was office based you could probably carry on working part time or something, but I fit heating and can’t be climbing around houses feeling like this.

Since I started treatment, I go to the clinic every 4 weeks to have my blood checked. The nurses are great and alternate what they’re looking for, but mainly they’re checking the status of my viral load. If the viral load is decreasing this means that the treatment is working. When I was first diagnosed I was told that my viral load was high, not a great sign apparently. I’m hepatitis C genotype 3a and although treatment was a real option I wasn’t too optimistic. That’s why I was really surprised and happy to find out at 8 weeks that my test was negative! I thought champion, that’s it I’m beating this thing. I’d hoped that the virus had decreased but negative? Great news.

My nurse told me that I had to take this result with a pinch of salt, as although it showed that the virus was being affected by the medicine, they couldn’t be sure that I’d cleared it until 6 months after I’d finished treatment. That hit me. Apparently it could seem to go away and then come back. It made me realise that I couldn’t take this lightly, I had to finish treatment to give my body the best chance of clearing this hepatitis C for good.

And I’m glad I did because I’ve just reached the 24 week treatment milestone and have received another negative result! Waiting for the test results was agony but now I know I’m 90% rid of this virus I’m focussing on the end of treatment. This result has perked me up no end but I’m not making any plans for after I finish treatment yet. I just need to focus on taking care of myself and getting through to the end. Then I can start thinking about rebuilding my life where I left off.

 

December 2009

28 Days

During a recent routine check-up my GP detected an excess level of acid in my stomach and, being cautious, recommended a liver function check. I’ve been fit and healthy my whole life, always playing lots of footie and working out, so I wasn’t too concerned and put it down to too many heavy nights on the sauce. Test taken, results in and the news wasn’t good. My liver was under an abnormal level of stress and more tests would be needed. 

Two weeks later, I was called back to my GP for the news that hit me like a train. I had tested positive for hepatitis C. At first I felt completely numb. I had to leave the room, try to get my thoughts together and take in what seemed like the passing of a death sentence. I was vaguely aware of hepatitis C from the various advertising campaigns and (helpfully) the only details I could remember was it being called the ‘silent killer’.

My GP talked me through the options, explained I was carrying the mildest form of hepatitis C known as genotype 3a, and recommended I take a six-month course of treatment. He made it clear how serious the side-effects of treatment could be, but also said that strong side-effects could be a sign that the drugs are working well. Treatment would begin in 28 days’ time.

I can’t be entirely sure as to how I got hepatitis C, since I once tried intravenous drugs as a teenager and have also visited the odd grubby tattoo parlour in the past.  I also once received a blood transfusion after falling off a seven-storey scaffolding tower. 

The 28-day countdown was a whole mix of different feelings: Fear. What’s going to happen to me? Anger. Why did this happen to me? Sadness. Has this ruined my life? Guilt. Did I bring this on myself? Confusion. What happens next? Had it not been for the love and support of my friends and family I’m not sure how I would have got through it all and for that I owe them a huge THANK YOU.   

Far from tiptoeing around the subject or treating me any differently all of my friends and loved ones rallied round, took the time to learn about hep C and stood by me. This support was massive for me in terms of coming to terms with things, accepting the facts and bracing me for the start of treatment. 

And while talking about people, I’ve also got to add how impressed I’ve been with all the medical staff that I’ve come into contact with so far. From my GP through to the consultants and nurses, everyone has been spot on - professional, friendly and helpful, which is great and goes a long way.

Treatment consists of a weekly cocktail of ribavirin (pills) and pegylated interferon that I ceremoniously inject every Sunday evening into my stomach. That night I generally don’t sleep due to the pounding, throbbing, aching dullness that rips through my entire body. I’ve never experienced pain like it (and I’ve fallen off seven flights of scaffolding don’t forget) and generally feel completely sapped of all my physical and emotional strength for the next three or four days. I’m often too weak to walk to the kitchen and even if I can there’s not much point as I’ve lost my appetite.

In three months I’ve lost seven kilos and have spent the majority of my time either sleeping, up to 15 hours a day, or cooped up watching crappy daytime television. I’m desperate to be back at work, back in the gym, playing footie again or having a beer with my mates. 

More than once I’ve thought about throwing in the towel and threatened to stop treatment. It’s better these days as I’m getting used to how treatment feels, but at the beginning it hurt so much and I felt so bad I thought I’d rather leave it to chance to see how things turned out. But yet again it was my family and friends who talked sense into me and made me realise I was stupid to gamble with my life. 

I’m now halfway through treatment and consider the finishing line in sight. The docs tell me I’m responding really well and I’m currently waiting on the results of a major set of tests due this week. I’ll keep you updated and bring you all the news in my next blog update coming soon.

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