HCV Positive

This blog is a journal recording my personal experiences with Hepatitis C.

Location: United Kingdom

I have hepatitis c, genotype 1b and started 48 weeks combination treatment, pegylated interferon alpha 2b and ribavirin in August 05. Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks. I am not sure at present what the future holds.

Thursday, June 16, 2005

Lull Before the Treatment

I decided to go ahead with the HIV and Hep B tests, and conveniently, this took no more than a phone call as they can use old stocks of blood to do this. The nurse tells me I should have the results in about a week. I am a little anxious.

I've been feeling quite overwhelmed since opening this blog, in a good way because it has generated a lot of support, and I am very grateful to everyone who has responded with welcoming and helpful comments, thank you all so much.

The other side of the coin is I sent myself dizzy, hopping from one blog to another and working out how to create my own, staying up late. This frazzled my brain and set the focus on me, me, me and all the health issues I seem to be juggling and sent me under for a bit.

I'm reducing my HRT at the moment and I'm like a woman on the edge, my partner would probably describe me as something like Reagan from The Exorcist, and if I heard him I'd possibly crush his nuts and eat em!

Another thing that's going on for me now is that after keeping my HCV status secret from all but family and close friends, I now find with treatment on the way, I'm having to disclose this in a larger arena for my own sanity. It has become unbearable to sit with colleagues putting plans into place for our summer activity programme knowing full well I will not be there, and that my absence may affect those plans negatively.

I recently advised my line manager that I am unlikely to be in work for the month of August as I am to undergo a 48 week course of chemotherapy but have not told her why. Of course she assumed that I had cancer which really bothered me and when I tried to steer her away from that idea, I found I was creating a bigger drama and generating intrigue.

I have now decided I will tell my line manager of my condition in order to gain her support and understanding. It will be easier dealing with other colleagues if she is helping bat away uncomfortable questions. I am also disclosing to a wider circle of friends too, I think it may be too much of a strain to stay mum during treatment.

Anyway I am going to Crete on Tuesday for a week and I'm really looking forward to stepping back from all this and just spending some lovely days and evenings. We are going to Chania, and we will be staying in an area of little fishing villages with mountains as well as beaches so I'm really happy about that. The hotel sounds lovely, its right on the beach and I'm dreaming of lazy sunny days, cosy tavernas, greek salads and gorgeously fit waiters dancing to Zorba the Greek. We have never been to Crete before so this is somewhere new for us.

Hopefully I will have the results of the HIV and Hep B test by the time I get back from holiday so I will include them in my next post.

Sunday, June 12, 2005

What, No Treatment!!?

As the results of my biopsy showed only mild inflammation, I was told that I would not be given treatment, but I would be monitored which would include a biopsy every 3 or 4 years.

I was not happy about this, although there was some comfort in knowing inflammation was only mild. However I'd had the chance to research the virus myself by now and I was beginning to wonder whether many of the odd ailments I had been experiencing before the malaria were possibly due to the virus.

I also realised that the damage to the liver by the virus was progessive and I couldn't understand why I would wait until I was further damaged before being treated. My consultant advised me that I should wait as new treatments may become available which may not be as devastating as the present ones. I didn't really have a choice and had to accept this. As far as I am aware there are no new treatments as yet.

I don't wish to complicate the story, but my partner also got malaria the same time as me and was also diagnosed HCV+ at that time. His biopsy showed cirrhosis and he was given treatment. He was type 2 and sailed through the treatment clearing the virus after 26 weeks.

In the meantime I was struggling with long shifts in the children's home, usually 10am to 10.30am the following day. It was a very stressful job and I was tired all the time, suffering from anxiety and full of aches and pains, very forgetful. I felt I couldn't tell anyone at work what was happening with me and this added to extreme stress levels. The work involved sleep in duties when you were supposed to go to bed at midnight after the young people were settled, but in reality you got very little sleep, often getting to bed stressed at 2 or 3am after one crises or other with the young people and still having to be up and back on duty at 7am. I did this a couple of times a week and it was crippling me. I had to leave this job, despite the stress levels I reluctantly left this post, relinquishing a permanant contract and taking up a temporary one in another field.

I continued to see my consultant from time to time until he told me they should start thinking about another biopsy. I didn't go back for a year. I then found from the Hepititis Resource Centre that biopsies were no longer necessary when assessing a patient for treatment.

When I did go back to see my consultant I was seen by his assistant. I had already been told that they wouldn't test for my genotype until I was ready for treatment but this guy didn't seem to have a clue. I took advantage of this and requested the test which he agreed to process. Bingo!

The next time I went for my appointment I was again seen by an assistant, a different one this time. She informed me it was time for another biopsy and I told her I didn't really want to do that again, she rang through to my consultant and after giving him my response, she put the phone down and told me I could go ahead with treatment if I wished. Wow, I hadn't expected that.

The assistant then gave me the result of my genotype test, I was type 1b and I was gobsmacked! How come I was not type 2 like my partner of 25 years? There were no answers only a lot of negative stuff about the length of the treatment and poor response rates. I told her I needed to go away and think about this as I had only ever prepared myself for having a type 2 genotype. She agreed and made an appointment for me to see the hep c nurse to discuss any questions I may have relating to treatment.

I saw the nurse who just gave me the worst possible case scenario. She made a big point that I should now be tested for HIV, I wasn't ready for that. I felt she was very negative and a bit like nurse Ratchet from One Flew Over The Cookoo's Nest, but I am reserving my judgement as I've only met her once and I am hoping that she'll turn out to be kinder and more sensitive than my first impression. I do hope so as I think we will be seeing a lot of each other and she will supposedly be one of my main sources of support at the hospital when treatment begins in August.

I again saw my consultant, the man himself this time, and we confirmed treatment dates etc. He again talked about the HIV test, when I told him I didn't feel I could handle this if it were positive he told me that people don't die from HIV these days. Anyway he didn't push it but told me it would complicate treatment if I were to find out later that I was HIV+, he also said he wasn't expecting that I would test +. He told me they didn't need to take any fresh blood for this test they could do it from old stock and if I decided to go ahead I could just ring the nurse and tell her to proceed with this and also a hep b test. I haven't done this yet, I can't make up my mind.

I can hardly believe I am actually going to have the treatment. I am excited and apprehensive. I do feel resentful that I wasn't allowed treatment earlier. I am 48 and now menapausal, I am not getting any younger.

Saturday, June 11, 2005

Let's start with Malaria

About 4 years ago I was rushed into hospital with falciparum malaria, a few hours later I had a complete blood exchange and was fighting for my life. I was put on kidney dialisis and developed pneumonia and much later found I'd also had west nile fever and possibly yellow fever.

I don't know how long I'd been in hospital before my consultant came to see me, I was dreadfully ill and hallucinating with fever. I remember him speaking to me but I could not open my eyes. "I'm afraid I have some bad news for you" he told me before informing me that they had found I had hepatitis C. He told me I was very sick, they were very worried about me and it would be a long time before I was better. This really cheered me up.

I asked for more information on hepatitis c in the hospital but got only sparse information on a flyer. A friend searched the web and printed off lots of information, mostly from U.S. and posted this to me. Sadly, in my vulnerable state, this had the unfortunate effect of absolutely terrifying me and I was convinced by the information and the remarks from my consultant about the length of time I may have had the virus, that there was a significant possibility that despite surviving the malaria etc against all odds, that I was now going to die from hepatitis C.

Bits of information filtered through from my consultant, I now understood that I needed to wait about 10 weeks until my liver recovered from the malaria before I had a liver biopsy which would determine how advanced the hepatitis C was. I told my consultant I was very scared because I may have had the virus over 20 years hoping for some reassurance, he responded by telling me that they couldn't tell me anything until after the biopsy and that he was very worried also. This just reinforced my fears that I may be terminal and I was too afraid to ask any more.

I was bed bound for weeks after I returned home and still convinced my hepatitis C may be fatal. I was still in telephone contact with the medical team at the hospital and during one of the calls I spoke to a man who was very sympathetic and sensitive. He realised that I was in a black depression and afraid to die, he kindly explained to me that it was extremely unlikely I would die from hepatitis C. I started to get stronger after this. I did get some further news from the hospital that I had low functioning thyroid.

About 3 months later I had the biopsy which I didn't like at all. I was still weak from the malaria and I just found it awful. The results however showed I had only mild inflammation.

Friday, June 10, 2005

HCV Positive

Hello to all fellow hcv positive bloggers.

I was diagnosed 3 years ago and am due to commence treatment 4 August. Recently found I was genotype 1b and so will undergo 48 weeks of treatment.

This blog is work in progress. Never done this before, never surfed the net and only got online on Monday so please bear with me whilst I get the hang of it.

More soon......