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Tink's journey with Hepatitis C

Monday, February 28, 2005

Decision Time

I made up my mind to go ahead and have the treatment. I start on April 4th - a month today.
I live on this small island of 75,000 people and now I am worrying about how ill I am going to look. Is that stupid or what? This time last year I was the fundraiser for a local charity so I do get recognised on a daily basis around the town. I normally worry about whether or not I have lippy on and now will I have to walk around town with a paper bag over my head....how bad is it going to be? Will I even want to go out? At the moment I play bridge twice a week - will I be able to continue to do this with a foggy brain (and a brown paper bag over my head)? Lots of questions and I just have to wait and see for the answers. Nothing is going to put me off though - I have to go through with this!

Thursday, February 24, 2005

Biopsy Results

Professor Foster called me on Tuesday evening. Andrew, my husband, listened in to the conversation and made notes for me. It's strange that you listen to a conversation but don't 'hear' alot of what is said. Andrew made copious notes when we went to London to see Prof Foster for the first time - there was no way I could have taken in everything.

"It's good news", said Prof Foster, "the biopsy results show that you are at Stage 1 (we had secretly thought it would be Stage 3 - no reason just a gut feel) and because of your low Viral Load Count (18,000) you have choices".

I could sit tight and do nothing. This is, after all, a very slow progessing disease. He told us that there are no new drugs on the horizon ie 3-5 yeears and that my chances of 'beating' the virus would go down by 10% for every 10 years I waited. On the other hand, with my biopsy results, I had a good chance of knocking it on its head by doing the treatment.

I have read so many dreadful things about the treatment side effects. I mentioned these to the professor and he said that there are folk out there who don't suffer so much but they also don't write about it either. He more or less said that 20% had a bad time, 20% felt not so good and the remainder had a fairly easy time.

I am not even on treatment yet and I feel constantly irritable, full of rage, constantly tired, totally lethargic and my hair is falling out. What chance do I have of having an easy time of it? Mind you, the cats hair is falling out too so mayble that has something to do with the season....

I knew before I had put the telephone down that I had to do the treatment. It's part of my personality - I'm a do'er. I don't want to look back in 10 years and think 'if only'. So, I slept on it and next morning woke up feeling exactly the same. I have to give it a go. I emailed Professor Foster and we plan to start the treatment after my Easter holiday. I feel very positive!

Tuesday, February 22, 2005

Update

Professor Graham Foster rang to confirm that my Genotype is 1b - as predicted. He will call me tomorrow with the results of the biopsy. So no need to worry about treatment or no treatment until then. He said it will depend upon what stage I'm at. I can't believe that this virus has been in my system for 23 years - gosh, when I think about all that wine I've consumed!

Saturday, February 19, 2005

SCARED STIFF

Hello, my nickname is Tink and I've recently found out that I have Hepatitis C. I'm living in a fog at the moment - I can't believe what is happening to me!

I went along to the GP with a lump in my stomach area and complaints of being continually tired. The lump turned out to be a hernia and the fatigue, which was initially thought to be Glandular Fever, turned out to be the Hep C virus. I've sort of heard of it but until now did not know a single thing about it. I had to rush home and dig around on the internet to find out exactly what it was all about. The more I read the more sick and scared I became.

I live on an island in the middle of the Irish Sea so doctors here are not so well used to dealing with alot of this sort of thing. They gave me an ultrascan and told me about the treatment and my immediate reaction was 'absolutely no way'. I very rarely take any sort of medication - I hate the thought of all those poisons being in my body. I hate needles - I took the day off school when we were due to have the TB jab just to get out of it. I forced myself to read whatever I could find on the internet and after reading alot of other Blogs and HepC sites, I realised that I do not even know what Genotype I have or what my Viral Load Count is..... questions I did not even know to ask when I saw my specialist.

I couldn't live without knowing these things any longer so last week I contacted a Liver Specialist in London and within 24 hours he had arranged for me and my husband to meet him....he gave me all the tests and 3 days later I had a liver biopsy. That was last Thursday and I expect to hear the results next Wednesday. My specialist thinks that because I probably 'got' the virus from an operation I had in Canada some 23 years ago, it is likely to be Genotype 1 which means, I believe, a full year of that dreaded treatment. It is amazing that I am now even considering it...only a week ago I was dead against it. Just meeting and talking to someone who knows so much about the Liver and Hep C has made me feel so much better. I feel strangely at peace - sounds daft - the lull before the storm perhaps....?