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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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

Friday, December 30, 2005

Treatment will kill you

Okay so another attempt to bring this blog into real time before the new year, I've not quite got there even with this entry, but it is one step further along the road. I have an appointment to see my consultant in January, so I would like to be upto date by then. The way its going I'll be lucky to get the job done by the chinese new year!

Talking of New Year, best wishes to everyone who reads this blog, I hope for many of you 2006 means a healthier and virus free new year and new life for you and/or your loved ones.

If you are reading this and contemplating treatment, please be aware that the reaction I had to interferon and ribaviron is very rare and it is unlikely to happen to you.

So I waited patiently for almost a week until 8 September when I could see my doctor. Most of the week I spent in bed, getting up for only short spells at a time when I felt I had a little energy. Sometimes I could function for an hour or so at a time, sometimes just a conversation would wipe me out and send me back to bed.

I arrived for my long anticipated gp appointment, now I would report all that had happened to me to my doc and she would hopefully get a care plan together where there would be some semblance of continuity of care, we would discuss ways forward, and how to manage my symptoms etc.

I entered into my doctors office and found I was being greeted by a complete stranger, a locum, doctor Zia!! I just burst out crying! I was so disappointed, angry and overwhelmed that I would have to explain what had been happening for the last weeks to a locum doctor who I thought I would probably never see again. I apologised to doctor Zia for breaking down and explained how much I had felt I needed to see my own gp at this point and how I hadn't been prepared to see a locum gp and how I just wanted to be seen by someone who would monitor my condition and be responsible for my continuous care.

Doctor Zia asked me if I had asked if I would see my own gp when I made the appointment. I explained that I hadn't asked as it was only a one gp practice I had reasonably presumed that I would see the only gp who works there! This question by doc Zia irritates me slightly, I think why is the bloody onus on me to ask? I think I ring the surgery and request an appointment to see my gp, the only one who works there, why on earth should it enter my mind to ask if I would actually see my own gp? To my way of thinking the surgery should have informed me that my own gp was unavailable and advised me when I could see her. Anyway the doc tells me that she will be working at the surgery more regularly as my gp is reducing her hours. Well thanks for letting me know about that.

I try to explain to Doctor Zia what has and is happening for me in some understandable order, she seems nice and she is young which is no bad thing. I ask her if she is familiar with hepatitis c and the treatment, she tells me she isn't. I persevere. Doc Zia tells me I am stressed, she's dead right there, she offers me antidepressants!! NO THANKS, I say I think its best I just leave all that stuff and just let things settle. I ask her if all the left side weakness I am suffering is a typical symptom of stress, she admits that it isn't really something she has come across. Great.

Doc Zia agrees I need continuity of care and admits they do not have any results of any blood tests or any notes from the hospital about what's been happening with me or my treatment. Isn't that just bloody marvellous? She says she will write to the hospital and tell my consultant that he needs to see me. With that I leave feeling that the whole exercise had been a bit of a waste of time. apart from an offer of antidepressants there was nothing this doctor could do for me or say to me at that time.

As I leave I make another appointment to see doc Zia the following week on 15 September. I'm finally learning to make contingency plans, not just leaving the surgery empty handed and finding a few days down the road things have gotten worse then wait another week for an appointment. I am beginning to realise that carrying hepatitis c symptoms for years and not getting a diagnosis has been partly due to being expertly fielded by the system when things aren't easily explainable and left to manage, when you finally get to the doctor the symptoms have subsided so nothing is done and you just wait for the next episode and so on. I felt I should be monitored by somebody whilst I was having those awful symptoms, that someone should know what was happening for me. I returned home exhausted and back to bed.

My next medical appointment at the hospital was 14 September, when I was to see doc Rachael who had prescribed the cipramol for me and who was on holiday when I reacted badly to these and it all went pear shaped. Doc Rachael had advised me at my last appointment to have my neck xrayed before I saw her again. I was still feeling dreadful but glad that I would be able to speak with her about the reaction to the cipramil and the continuing symptoms of left side weakness and hopefully she would investigate that now. We had got a little care plan together last time I saw her, and although the plan had gone to pot, at least here now was the first symbol of continuity of care as I would be seeing the same doctor twice in succession. Well that is what I had thought.

I turned up for my appointment and informed reception I was to go and have the xray before I saw the doc, and off I went. I came back to the waiting area and the nurses were flustered when they saw me, apparently they had been calling my name and looking for me for the past hour, no one had informed them I was in xray they thought I had gone home . 'That was despite the fact that xray had phoned the reception and advised them that I was going to be delayed!

One of the nurses took me off to weigh me and told me I would see my consultant and not doc Rachael. I was disappointed and upset by this as I had not seen my consultant since before I went on treatment, now I would have to fill him in on everything again and bring him upto speed with what Rachael and I had agreed before we even got around to my current state. I had so much I wanted to discuss with him and I wasn't in the least bit prepared, I wished I had known beforehand that I would be seeing him instead of Rachael, my thought processes were too slow to adjust to this new development.

I went in to see the great man himself. He told me he had received a letter from my gp requesting that he see me, so that happened much more quickly than I had anticipated. Without much preamble he clipped my xray to the wall and went into a long sermon about my neck, about how it was not as bad as his, about how he would prescribe me a collar to wear, about putting a hot jet of water on my neck in the morning in the shower! The more he went on waffling away my consultancy time, the more uptight I became. This is not why I was there, I had been dealing with spondylitis since I was 25 years, this was not why doc Rachael had requested the xray. I see the physiotherapist for this type of discussion.

He finally began to speak about my treatment and that's when he dropped the bombshell! 'I will not be putting you back on treatment for the simple reason that treatment will kill you'!!! I was in shock, this was not what I expected to hear. My mind was racing, 'Couldn't you put me on a child's dose?' I ask.
'If I put you on a child's dose you will die'!! Those were his words plain and simple.
I asked him about a biopsy to check how my liver was faring. 'I will not give you a biopsy because there is no point, what is the point of knowing you have liver damage if you can't have the treatment?'!! I am doubly shocked.
'But you know I have genotype 1b', I say, 'and you know that this can mutate to cancer without intermediate cirrhosis, shouldn't you do a biopsy it has been 4 or 5 years since my last one.'
'Even if you had cancer I would not give you the treatment', he said. 'Look, your blood tests are ok, we will keep monitoring them, come back in 4 months.'
I could not take all this in, all the things I wanted to discuss went out of the window. I left with my head in bits with all my awful symptoms, with the full knowledge that that was the end of my current care there, no matter how I was feeling. I returned home and back to bed, isolated and with ever deepening depression.

That's it for now. I will endeavour to complete this soon. Still got more of a nightmare with aftercare from my gp and locum to report as well as the accupuncture saga. It will have to wait until next time.

Monday, December 19, 2005

Christmas Humbug

Well Christmas is almost upon us. Joy to the World!

I wanted to take this opportunity to wish all visitors to this blog, especially fellow hepatitis c bloggers and forum members a blessed christmas and a healthy, happy new year.

Let's hope that the new year brings healing and recovery for all who live with the virus and those who are on the treatment journey.

God is great, nothing is beyond Him and I pray for new cures and a better understanding of this disease in 2006.

I don't know about you but I find the true meaning of christmas has very much been forgotten. I had trouble finding any christmas cards in my town that made any reference to Jesus Christ. Christ, as they say, has been taken out of christmas.
Not in my heart, He is my hope and my salvation.

Anyway if you want to find how to get into the real spirit of christmas follow
  • this link.">

  • God bless you all.

    'The word became flesh and dwelt amongst us. We have seen his glory, the glory of the One and Only, who came from the Father, full of grace and truth.'
    John Ch1 v14

    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.