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Home Blog World Hepatitis Day 2017

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World Hepatitis Day 2017

Written by Aidan on 26/07/2017 09:43

As we mark World Hepatitis Day this Friday, 20 year old Aidan shares her experience of living with Hepatitis C.

Diagnosis

I started to feel unwell the year I was doing my GCSEs. I had had months of pain, losing my appetite, and honestly feeling as though something was wrong. Finally my mother convinced me just to go and have a blood test, the first time I'd ever had one. When the initial results indicated Hepatitis C, my GP was so certain it was a mistake that she arranged for them to be done again just to double check.

I still remember sitting on the plastic chair in the doctor’s surgery and hearing the diagnosis. Mum just sat there, practically shaking as her and my GP both looked at me. It turned out that the virus had been passed onto my mum years before, when she was given contaminated blood in a transfusion. I still think to this day she blames herself for this - she took the news harder than I did.

I must admit I didn't say a word at the time. When the GP told me, I just sat there. I mean, I half knew what she was talking about, but everything was going in one ear and out of the other. There was my mother, and my doctor (whom I had known since birth), both on the verge of tears, but somehow I couldn't cry. I just nodded my head, said okay, and tried to get out as quickly as possible with a brave face. I could see how badly it was affecting my mother, and I didn't want to add to that.  It was a pretty delayed reaction, it took me a couple of days before the flood gates just opened one night and then it hit me all at once.

Treatment

Initially I turned away the idea of injections or interferon, mainly because I was trying to start my A Levels and I didn't want the world to know when I had to set alarms for scheduled medication. I had to wait two years until I was eighteen to even be considered for the clinical trials. So I was 18 and at university when I finally started treatment. Eight weeks of Harvoni (ledipasvir and sofosbuvir) may have been painful but it was worth it to get a negative result at the end!

Reaction

Obviously my parents knew and my brother but while I did have the illness, I only told a few friends  The people I did tell were there for me 100% and we just got on with life like nothing was wrong. I didn't say a word to anyone else, mainly because I was scared. I still remember hearing people call it 'dirty' or 'impossible to come back from' without me even telling them. Obviously as a sixteen year old that really scared me and I listened to a lot of it and took it to heart.

Living with Hepatitis C

Lots of people know about the main symptoms, the pain, and the nausea. However no one ever tells you about the mental toll it can take. Depression and anxiety can also be problems while dealing with the virus. A lot of the problems I dealt with were mental. I could take something for the pain, or sleep through the fatigue, but the little voice in the back of your head doesn't just go away. The voice telling you that you're infectious, or that you're less than anyone else. It takes more than just physical strength to overcome those. I still had that voice up until the very end, and the only thing I would say is that if you can get past that, then the rest is going to be A-okay.

Today

I'm still with the clinic at King's College Hospital in London. I've been negative for just over a year now, but I'm still in and out every couple of months for monitoring.

At the moment I can't complain. Twenty years of the virus certainly took its toll but that's just the cost of these things. Going through the whole process has really given me a perspective and a get up and go attitude. There are still hiccups here and there, but it's made me a lot more conscious of my personal health and looking after myself.

Skydiving for CLDF

As it was coming up to the one year Hep C free mark, I knew I wanted to celebrate the chance I was given with the treatment. I wish I had known about CLDF when I was going through the monthly clinics and blood tests. It's really about education on these matters, and just making the best of the situation. Having witnessed it all from first hand, I wished that my mother hadn't been so alone in all of it. CLDF works not only with the patients but with the families, and that's so important to me.

What’s next

At the moment I'm about to start my third year at university, studying for a Masters in Aerospace Engineering with Pilot Studies. The treatment took up the last part of my first year (making exams a nightmare), but I'm still here and I'm determined to finish to the best standard I can. There's no barrier now for me!