Contamination Narration

I found out that I had contracted Hepatitis C from contaminated blood products inadvertently.

I am a 33 year old woman and have Type III von Willebrands disorder (vWd). This is von Willebrands in its most severe form. I was diagnosed when I was 8 months old and since that moment I have needed at least 1 injection per month of initially cryo-precipitate in the 70’s and 80’s, and then 8Y and Haemate P factor VIII in the 80’s and 90’s to control my bleeding. Due to the severity of my bleeding I have also needed a number of blood transfusions over the past 33 years. Initially my mum and dad had to take me 24 miles to hospital and back every time I needed treatment. When I was a teenager I learned how to inject myself and began home treatment.

Having clotting factor blood products available on the NHS was life saving. No-one ever told us of any risks associated with using blood products or having blood transfusions, we accepted that they were the solution to a severe condition – one that would enable me to achieve a quality of life impossible for a severe bleeder, prior to the introduction of clotting factor products.

My mum remembers me having non-A, non-B hepatitis on my notes when I was only a few years old but this was neither explained then, nor when the virus was re-named Hepatitis C.

When I was 19 I was sent to St Thomas’s Hospital in London for an operation on my ankle. While I was being prepped for the operation the consultant, let’s call him Dr S, asked me about my having Hepatitis C. I did not know what he was talking about. I had no idea at that time that I had contracted Hepatitis C. It was obviously in my notes but none of my doctors in Manchester had ever mentioned it to me. This was how the news was broken. I was sitting on the ward, surrounded by nurses doing their jobs and other patients – I felt frozen in time. Dr S may have tried to explain more seeing my shock but I don’t remember anything else he said.

I never confronted my own specialists as to why I had not been told I had contracted this life threatening virus. When I asked for more information on my return home, I was not told about the effect Hepatitis C could have and the prospects for liver damage, cirrhosis and liver cancer. I was only told that it was a virus that could take in excess of 20 years to cause any problems – irrespective of the fact that I could have contracted this anytime after my first injection 19 years ago, a fact I was unaware of at the time. I was advised that I should be careful not to drink too much. Not advised to avoid alcohol, only to drink a bit less with no real guidance as to how much was a bit. I was not told anything about the risk to sexual partners; luckily I had none at that time…

For the next 5 years I continued living my life – finishing university, figuring out what job I wanted, moving into a shared house with other young professionals – activities typical of a young person with a positive future. My Hepatitis C positive status was my only symptom of the virus and I chose to ignore it rather than face up to my uncertain future.

The way I did find about the realities of the virus – the prospects for liver damage, cirrhosis and liver cancer and the measures I should take to protect myself and others was from a support group that I became involved with – the Manor House group. This had been set up to campaign for help for those with Hep C but was a wonderful support and education network for someone like myself.

Due to what I learned I was unable to forget the virus all together. I had to ensure that no-one shared anything of mine. I often have gum bleeds due to the vWd and had to tell everyone I lived with not to use my toothbrush or share my glass or food. I found sexual relationships impossible. If I started to date someone I had not only to tell them about the vWd – a complicated and rare condition but one I lived with – but also felt obliged to make them aware I had HCV. How could I expect someone to start a relationship on an emotional or physical level without warning them? Not only the risk to themselves but the fact that I had an uncertain future due to a potentially terminal virus.

When I was 24 I was advised to take 12 months interferon treatment. I was working as an Events Manager at a large department store at the time. My employers knew about the vWd and the HCV and were happy for me to go ahead with the treatment even though I had explained the possible side effects. I had been told that I’d be injecting three times a week and would possibly feel a little fluey the day after the injection. I’d discussed this with work and they’d agreed if that was the case I could reduce my hours and work on the days in between when I felt better.

The worse thing about starting the interferon was it forced me to acknowledge that I had this life threatening virus in my blood. At that point my future was impossible to contemplate and I found myself thinking what music I would like at my funeral. That’s how it made me feel. I always felt I was a strong individual and that I could handle anything vWd threw at me. This was something else, far beyond my control and it loomed over me blocking out the light.

This course of treatment worked for me while I was on it – the PCR test was negative, but the virus came back immediately I stopped. I had horrendous continuous side effects – leadening fatigue, flu-like shivers and hot flushes, pain like my bones were rotting, furious brief but intense rages, itchy sensations on my skin at night, headaches, forgetfulness and more – I was unable to work after a couple of months of treatment. My company held my job for me for a while but after a few months terminated me because I was unable to guarantee when I would be fit enough to return to work. It took me over 6 months to get back to normal-ish after the 12 months of treatment and my hospital said they would not recommend I do the treatment again because it had affected me so badly.

When I felt well enough to go back to work I had no job and I still had the virus. I decided to retrain in order that I could maybe work from home if I ever did have to take more treatment or was too ill with the virus to get to work. I took out a career development loan and did a computing course.

About this time I met a man through a friend of mine from university. He was a farmer from Worcestershire and was totally unfazed when I told him what I was going through. I explained about my bleeding condition, the virus which had just reared its ugly head again, why I was not working at the time and he asked lots of questions and still wanted to see more of me.

After another year I’d moved to Worcestershire to live with this man, Adrian, I was working in IT and got a new hospital, the QE in Birmingham. They wanted me to go on a 6 month pegylated interferon and ribavirin trial. They said it had a good chance of success as I had genotype 2 and was a fairly young woman.

I was not keen after the last time without really knowing the state of my liver. I asked for a biopsy and even though I was a bleeder they agreed to do it. Unfortunately the biopsy was not monitored carefully and I had an internal bleed into my liver. I ended up in intensive care having had an operation to drain the blood from my liver, to try to control the bleeding and received six pints of blood. I was in and out of hospital for 3 months but at the end they told me my liver was showing only mild scarring – amazing after what I had not been told was probably 25+ years with the virus.

I did the 6 months of pegylated interferon and ribavirin. I struggled with the side effects again during and for 8 months after the treatment and was diagnosed with depression because I was so ill – even with my canny move into computing I was unable to work for the entire time, at home or otherwise. However this time the treatment worked. The virus was negative during the treatment and at the six month test afterwards. I was given the six month result just before Adrian and my wedding day. The virus is still negative, it is no longer in my blood although it has not gone altogether from my body – the doctors are not able to say it is a complete cure. At my last test in November 2006, 3 years post treatment, I was still clear – thank god!

So how is life now I’m virus free?

Since the second lot of treatment I have been left with long term after effects. I’m not complaining because I’m so pleased to be HCV negative but I am concerned by the chronic post-viral fatigue I’ve been experiencing and how long it has been going on.

I remember feeling appalling a few months after the treatment and convincing myself that the HCV had come back – luckily I was wrong. I constantly expect it to have reappeared from somewhere because of how awful I feel but it hasn’t yet, so that’s good.

I was diagnosed with post-viral fatigue (chronic fatigue) by my GP due to the time it took me to get over my treatment. After I did get back to work – 10 months after the second lot of treatment, I found that I had a low physical limit beyond which I’d get horrendous fatigue, pains in my bones and joints, headaches, hot head flushes – exactly how I felt on the treatment. It would last for days or sometimes weeks. Mostly it was triggered by getting some kind of viral infection which would somehow set me right back, but could also be just overdoing things and not by any normal standards.

Since the second lot of treatment I have had a number of days and weeks off sick. Before the treatment I had worked my way up into IT consultancy and was really enjoying my job. After the treatment I found an IT position locally which was less stressful but with a lower salary because I didn’t feel capable of working at my previous level. Shortly after I started this job I got pharyngitis and this led to a sudden descent into 7 months of horrendous chronic fatigue and depression caused by feeling so awful so long after my treatment. I was very lucky again and my employer kept my job open for me and enabled me to return part-time and then full-time back at the beginning of 2006.

I was so happy to be back at work and feeling practically normal, only 3 years after clearing HCV. However I was not doing anything outside work because I was exhausted by the time I got home. Too tired to cook or hold a conversation with my husband. Also my memory and concentration have never recovered to the level that they were at before the treatment.

After a whole year of feeling much better and working really hard, I have been off since another throat virus in January of this 2007 until now. Again with the exact same problems – incapacitating fatigue – such that I find it hard to hold a conversation if I’ve done too much, my memory and concentration are really bad, I cannot sleep because of the pains in my legs and the itchy sensations – recently diagnosed as formication, I feel hot flushes in my head and often have headaches.

My GP now says it can’t be post-viral (as in HCV) fatigue because it is too long after I cleared the virus and had the treatment, which was 2003. I’m convinced it’s still connected but as the docs have no long term evidence to go on I feel like a malingerer.

I’m sure it is the treatment or the HCV which has left me with this chronic / post-viral / call it what you will fatigue problem. I’m managing it and learning to adjust my life to suit. It looks as if I will have to re-think my career again because I cannot continue the job I was doing at the rate I was doing it. I cannot afford to retrain again; we cannot really afford for me to take a pay cut but may have to. My husband is working himself ragged with the constant worry that I may be like this for some time.

My haematologist has suggested I have a ‘tendency’ for this fatigue but I never ever had this problem before the treatment. As a bleeder I’ve always lived my life to the very best of my ability and I resent the implication that I am in some way allowing myself to wallow in this state.

I’m currently off work still. I have improved slightly over the last few months but I’m still having headaches, painful joints, horribly aching legs at night, itchy crawly sensations, raging moments, hot head flushes, huge forgetfulness, incoherence (can’t hold a conversation after 8pm), that’s all I can think of for now…

I no longer have the Hepatitis C running around my blood but I worry constantly if having it dormant in my body still is causing these problems. I cannot have recombinant treatment because I need the vW factor, as well as the factor VIII, that is present in heat treated factor VIII but not in recombinant. I worry every time I inject myself that I could be, or could already have been, exposed to other viruses. But what choice do I have?

0 thoughts on “Contamination Narration

  1. Ros, I've picked up bits of this over the years from talking to you and family, and from your mum's book, but reading it all in one place like this is horrifying and moving. That's a very powerful post – I have passed it on and hope that you get enough signatures for the EDM to have a a really positive effect on your life today.

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  2. What a great piece, summing up what a lot of us with viral infections have to deal with.The virus not only affects our health, but our life, work and family.Thanks for sharing your experience.

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  3. Bryony – thank you. It is, unfortunately, how it is and we will continue to seek a resolution.Stuart – generally I try to put a positive or humorous spin on my life and all it entails, but for the inquiry I tried to get as realistic as possible. It was not easy to write because it forced me to acknowledge how shitty things can be for us bleeders and me in particular. However, as I said to Bryony, them's the facts.I'm sorry that we are still experiencing these difficulties.Thank you so much for your feedback. xxx

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