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.