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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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.

Monday, December 12, 2005

Red Sea and Aftercare part 3

The holiday to Hurghada in Egypt was great, sun, sea, rest and relaxation. Unless you are into diving, the red sea is very much a hotel based holiday, but the hotels by and large, are quite luxurious and usually have good entertainment programmes. Having taken winter holidays in Sharm el shiek and Taba in previous years, we were pleasantly suprised at just how warm it was in Hurghada this time.

My health was ok initially and because of this I got quite excited at the prospect of taking an organised tour to Luxor and visiting the Valley of the Kings and the temples of Luxor and Karnak. Unfortunately the day we should have booked giving the required 24 hours notice, I had a flare up of symptoms/side effects (?) and we had to shelve the idea. Despite this we continued to enjoy our holiday, it just meant we stayed closer to the hotel, and with the flare ups I found out what 'shop till you drop' really felt like.

Our hotel provided a different act each night, eg, acrobats, snake charmer, magician, belly dancer etc, but our favourite was the strong lady. This young woman performed a number of impressive stunts, eg, she took a large slab of concrete which after she had got 2 men from the audience to place on her stomach and sit on it, she placed on her head and got her male assistant to smash it in two with a lump hammer, it was painfully fascinating to watch. Next she took 2 ladies from the audience, put one on her back, carried the other in her arms and bounced up and down on a bed of nails. Man she was tough!

Back to my aftercare story...

The day after I had seen Doctor Racheal, Thursday 1st September, I took my first dose of cipramil. As the day progressed I became more and more zombie like with increasing anxiety and more pronounced leftside weakness. Finally a return in full force of the old tremor symptoms and the violent jerky wake ups, the waves of weakness, muscle tension, down bearing pressure, and the mental confusion.

I was so disappointed, I had thought that when I had visited Doc Racheal yesterday that I was on the mend and just had to take things slowly and work on the depression, but the pills were having a dreadful effect on me and I was back in bed. It was clear to me I would not be able to continue on these pills, the doc had not warned me about any of this, except to expect perhaps a slight reaction, but this was intolerable, I was back to square one.

I rang the hospital to see if I could get a message to Rachael and see what she had to say, I was told she had gone on holiday. It seems just when you think you are getting somewhere with a coordinated health plan, the continutity is lost again. I couldn't bear the thoughts of going through the rigmarole of trying to explain my history and symptoms again with the secretary so I just left it there and tried to collect my thoughts, which was not easy.

I lay in bed watching a shaft of sunlight on the bedroom ceiling, that with every car that passed by the house, appeared to sweep across the room then shrink back into itself, before returning to its original spot . I found myself hypnotised by this repeated reaction of the light, in a very wierd way, almost getting taken in and lost in its movement.

I could not think straight and became confused. I shook myself and rang the NHS helpline, remembering they were the people who made me feel least like a nuisance last time I had problems. They advised me that if things got any worse to go to see my gp or get to A and E.

I knew I would not be able to see my GP and I didn't want to have to go down the A and E route so I rang the hospital again and made an appointment for the attenders clinic the next day.

After a very uncomfortable night I went to the attenders clinic on Friday 2 September. I was initially pleased to find that I was seeing Doc Lucy, who was the doctor I'd seen on the previous saturday when I had been admitted into hospital. I thought at least she will understand what has been going on and I only have to fill her in on what happened with Doc Rachael and the antidepressants.

Just as I was about to enter doc Lucy's consulting room, my consultant passed by who I hadn't seen since before I began treatment, he stopped when he noticed me and aksed me why I was there, I explained I had reacted badly to the cipramol, he muttered something about oh Rachael shouldn't have given you those. At the same moment Lucy waved me in, my consultant moved on and the moment was lost. I was too out of it to take control of that situation, to call him back, ask him to clarify etc. I was stooped, my movements were very slow, I had an up and down kind of vertigo, my thought processes were crawling along.

I began to give Lucy the update and explained all the leftside weakness and disturbed sensory stuff, 'oh you are very stressed' she said, 'so the antidepressants didn't work then, well let me give you some different ones.' I was horrified, I couldn't possibly take anything else, I told Lucy I did not think I would tolerate any more meds and that I needed to feel better not experiment with stuff that would more than likely, considering my history, land me back in bed feeling dreadful.

'Are you back at work yet?' Asked doc Lucy. I asked her if she was joking, I couldn't believe this doctor who saw the weak and debilitated state I was in just 6 days previously when I was admitted into hospital, who I had just described the continuing hemiplegic like symptoms to, who I had described the severe reaction I was still experiencing from the single dose of cipramol, could possibly imagine I was back in work!!! I knew then that she did not have an inkling of what I was experiencing, it was a scary and sobering moment.

Let me just try to describe the leftside stuff, its like being made of a soft metal and someone placing a magnet on your head and drawing it slowly down the back of your skull, across your cheek, then down the left side of your body, the pull being felt more acutely at the point the magnet is passing. The sensation is not static it moves and travels in a fluid motion all over the left side of my face and body.

Lucy continued, 'you need to get up early, not sleep through the day, keep active..' etc, etc. I had lost all confidence in her by now. Didn't doc Racheal 2 days before admonish me to forget the 'full of beans' Poppy for a while and resign myself to the fact that I needed to just rest?! I found these contradictions difficult to deal with and difficult to question in the poorly state I was in.

I asked if the thyroid function test results doc Racheal had organised were back yet. I was willing by now to entertain the idea of increasing the tyroxine as I just wanted to feel better. 'Oh we don't have one of those' said Lucy,
'but doc Racheal requested one' I protested.
'well' said Lucy, 'its not here and there has not been another one done for you, but I do have your previous one and that one is fine.'
'If that one is fine', I said, 'then why did doc Racheal suggest I increase my thyroxine?'
'Oh I've no idea', she began to waffle and search down her computer screen, 'your cholesterol looks ok', she offered.
I was puzzled, 'is it really?'I asked,'it was high a few weeks ago'
Doc Lucy scrolled down her screen again, 'oh yes you are right it is still slightly high, I was reading the wrong one'.
I decided I was wasting my time, Lucy had no answers, explainations for my symptoms or solutions, I doubted she knew what the hell she was doing at all. I left feeling very poorly indeed, confused by the contradictions and upset at the lack of continuity of care and angry again that yet another blood test had gone astray. To date now that had been a HIV test, a Hep B test, a quantative PCR and now a thyroid function! It must be a record.

It was 5 weeks since I'd started treatment and 3 weeks since my last shot of interferon and I wanted some answers or understanding of what was happening to me. I was sick of being passed from pillar to post, apart from the brief passing in the corridor I had not seen my consultant and don't ask me where my nurse was I've no idea.

I realised that the system was not working for me, I had thought someone would say, this is what is happening to you, this is why it is happening and this is what we/you need to do, but I felt I was not really being listened to, and definately not understood. I decided I had to get to see my GP bring her upto date, in order to care for me correctly she needed to know what had been happening and perhaps she would take my symptoms seriously or have some answers.

I rang my GP but could only get an appointment for the following week, Thursday 8 September. I was disappointed to have to wait a further week, I just hoped I didn't have a stroke or something in the meantime. I was really quite frightened now by my symptoms and didn't think I should be spending most of my day weak and in bed.

I'm going to leave it here for now, but I do so want to bring this upto date before Christmas and the new year, it is taking me much longer than I anticipated to bring this story back to real time. Next time I will tell you about my experience with accupuncture and massage and hopefully bring you to the conclusions made by my consultant. In the meantime I wish all of you currently on treatment a very gentle time and ask all of you considering treatment to remember the reaction I had to the medication is very rare.


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