My Life With Hep C 'The Beginning and Start of Treatment'

Two years before I was diagnosed with Hepc I knew something was not right with my body. I was experiencing aches, pains and severe weakness, which was unusual for me as I had always been so energetic. I went through numerous blood tests for two years and they could not find anything wrong with me. They just put it down to chronic fatigue syndrome. Eventually through random blood testing I was diagnosed with Hep C.

I can't begin to tell you how shocked, horrified and confused I felt. I literally went weak at the knees as the first thing that entered my mind was HIV, and my knowledge of this disease was very limited. My immediate thoughts were that my life would be cut shorter than I had expected, and my mind started racing around and around till I could no longer hear what my Hep C nurse was talking about. She had been extensively explaining all the pros and cons re: hep c and my prognosis, and I just could not take it all in.

On the way Ed (my hubby) and I were silent, so different to our journey up to the hospital as we were listening to U2's 'I Still Haven't Found What I Am Looking For' . My god I thought, how weird was that, must have been my ESP homing in. When we reached home we were still silent and after a while I asked Ed to repeat to me what had been said, good job he has a photographic memory. Ed explained in every detail what my nurse had said to me. I was numb and could not think straight.

I was in my final year completing a three year course on Integrative Counselling and in my second year I had been diagnosed with Diabetes which was equally shocking to hear. I had spent six months getting to grips with Diabetes and eventually learned to be in control of it and not let it control me. So when I was diagnosed with Hep C it was a double blow to me. I somehow got through the course and received my certificate which was a huge achievement for me having had a disruptive education as a child. Although I was excited about the prospects of setting up my own practice as a Counsellor, there was always niggling and questioning thoughts going on in my head regarding my illness.

I started working my practice for six months still oblivious of the nature of Hep C almost as if I had refused to accept it. Unfortunately at the end of six months I started to develop symptoms of nausea, sickness and dizziness and kept falling over. I was then diagnosed with Meniere's Disease, and started treatment for it. It was only when one day I was walking up the stairs with my client that I almost fell back on her, and even during the session I felt nauseated and sick. As much as I tried to hide the fact that I felt ill, my client then asked me if I was ok. It was then that I decided that during the counselling process the Counsellor needs to be fully engaged with the client, which I was not. I knew at that particular time I was unable to continue with my Counselling practice so I eventually gave it up.

After being diagnosed I was told that I would have to have a biopsy every five years. After the first biopsy the results showed that the virus was active but not yet in need of treatment. From thereon I spent the last five years in almost isolation, I was getting weaker by the minute, not wanting to talk to anyone, and still not knowing where to seek help and information on Hep C. In March this year I had my second biopsy which revealed that I was now RNA and Geno type 1A so I would be needing treatment. My nurse handed me a card and told me to get in touch with Julian who is an advocate at The Hep C Trust http://www.hepcuk.info/ in order to get on to my local PCT for funding. This was accepted and I started treatment on 14/06/06.

The treatment was Pegasys Inerferon 180mg and Ribavirin 200mg, and my nurse showed me how to do the injection, which was the scariest part for me.
My results at the start of treatment:

First Wk: HB 12.2 Plts 163 WBC 4.2 Neut 1.7

In the first week of treatment I firstly fumbled with the injection and misdirected it into my finger, eventually stabbing myself in the thigh which was a big mistake as it left me with a huge bruise. Then after the injection I had fever and chills, something like flu. As the first week went by I rapidly went downhill experiencing more fatigue, weakness in legs, loss of appetite, diarrhoea and irritability. I said to Ed that I wished I had someone to talk to about this, not knowing at the time that I could have rung up my Hep C nurse

The second wk's results as follows:

Hb 9.9 Plts 192 WBC 4.3 Neut 2.2

By the second week I was feeling much worse my hb had dropped from 12.4 to 9.9 in a short space of time, and I was now getting really worried about what this treatment is doing to me. I could hardly walk and spent most of the time on my sofa or on the toilet feeling really nauseated, sick and weak and with a very dry mouth. I kept wondering how long can I go on this treatment even though it's only my second week.

Third week's results: only hb 8.9 as nurse on holiday, no other tests done but got a personal phone call from my nurse saying I should reduce the Ribavirin from five to three a day due to a low hb. My nurse told me that my weakness was due to anaemia.

Fourth week's results: HB 8.8 Plts 262 WBC 4.7 Neut 2.5 Still experiencing horrible sides, ratty with Ed and just feeling debilitated and powerless physically and mentally. I was not sure if I should be feeling like this.

Fifth week on treatment. I was feeling like I was at death's door and could not get up off the sofa and thought that I needed an ambulance, so I phoned my nurse who said I should stop the treatment immediately for the next two weeks. Three or four days after stopping treatment I started to feel better which brought a smile to my face for the first time in months.

More on treatment next time. See you all soon.
Ed and I wish everyone a very Happy Christmas and New Year.


Marie & Ed