Summerized Info of TX. Plus Introduction To The HepC Forum

When reading my page from yesterday I had not realised that it was so long and laborious, and readers must have had a job getting to the end of it, because I did. I came to the conclusion that in the interest of readers and myself it would be better for me to try and summarize it the best way I can.

By the sixth week I had developed a chest infection, and experienced acute shortness of breath. I was prescribed antibiotics and the infection took at least two weeks to disappear. In these two weeks I was off tx and almost came to the point of never wanting to go back on it again. On the eighth week I was advised by my nurse to start back on tx taking Ribavirin 2x2wks then 3 thereon, plus Interferon x 1 per week. I still felt pretty awful on tx but decided to grin and bear it as I thought to myself what have I got to loose.

On the tenth week I was advised to up the dose of Ribavirin to 3 per day then on the eleventh week I received a call from my nurse to reduce the Rib. to 2 per day as my haemoglobin had dropped to 8.6. On the twelfth week I was once more advised to up the dose to 3 Rib. per day. Then on the fifteenth week I received another call from my nurse to stop the tx altogether due to a haemoglobin of 8.4. My results at the end of tx were:
ALP - 66(30-135) ALBUMIN - 43 (30-51)
BILIRUBIN - 8-(0-17) PLATELETS - 211 (150-450)

HAEMOGLOBIN - 8.4 (11.5-16.5) NEUTROPHILS - 2.6 (2.7.5)

ALT -69 (0-50) LOG DROP 1 only (368464 - 40852)

THYROID - 1.6 (0.35-5.5)
I was pretty disappointed to hear this because two weeks earlier I had been put on Cyclizine 50mg for nausea and as a result of this I was beginning to feel much better. So folks that's my fifteen weeks experience of sheer hell on tx and it has taken me at least two months to finally accept that it was not for me. The hope is that as another hospital have recently accepted me as a new patient, I may be treated with a less invasive cocktail, so I have been told. More about that and tx later in my blog. Meanwhile the last few months are being spent in recovery from tx. What a relief! Now I can start living again and hope for a much better ride the next time, one lives in hope!!!!!!!!!

Now for my introduction to The HepC Forum

First of all this is Ron (left) the inventor of the HepC Forum who has worked tirelessly in creating a means of reaching out to the globle community. Without his knowledge, experience, and continual support I am one of many who has found the forum a godsend.

This is Martin and Carol on the right at The Covent Garden Gathering of hepc friends from the forum. As I learned after joining the forum, Carol is the moderator who is always there to help, support and sort out various problems that occur on the forum. Martin is the guru of the forum who has created his own HepC site which is a must for not only beginners but for everyone seeking information re:HepC.

My introduction to the forum was like a bolt out of the blue, don't ask me how I got there but when I arrived I was overwhelmed by what I found. Having never been on a forum in my life this was a whole new experience for me. At first I was not sure what to say as I was in such a hurry to find some help and support. I need not of worried so much because I was given a really good welcome from Carol, Martin and a few other Hepc forum member's who readily offered their help, support and advice to me. When I first joined the Hepc forum I was introduced to Martin's web site which has given me more information and understanding about HepC that I could ever have hoped to learn from the hospital where I was being treated! His site is an inspiration to us all, in particular for his insight, knowledge and the work he has put into creating it. I have appreciated all the help, support and advice that he, his wife Carol and everyone else on the forum has given myself and my husband since meeting them.

Meeting people on the forum has been a wonderful experience for me and even though my lovely husband has supported me all the way, I still felt isolated re: HepC, not knowing where to turn to and trying to deal with all sorts of health issues on my own. Since joining the forum I have become much happier and more positive in my skin. I have met quite a few friends who have supported and encouraged me with my illness, and my only thoughts are that it would have been so helpful if I had met all these unselfish supportive people when I was first diagnosed with Hepc. I know! one should never wish for what has gone, and the past is the past, so hey, I am now concentrating on staying with positivity and a much brighter future.

Thank you all so much for your help and advice, Ed and I are so pleased to meet such a wonderful bunch of people.

Need to sign out now to give Tommy (cat) some serious tlc as he is feeling very neglected and missing his cuddles since I started blogging. Oh dear! someone else is showing serious signs that he's lost me forever, over and out....you now have my full attention sweet heart.

Marie

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

Ten Year's Before Diagnosis of HepC

As I sit here listening to Andrea Bocelli 'Aria' The Opera Album my memories drift back to my happy carefree life 10year's ago, when I did not have a care in the world and never ever had any reason to worry about my health.

I remember when I used to own a Peugeot racing bike with ten gears. I would travel everywhere on that bike, up hill, down hill, London to Brighton and back, to work, you name it that bike would take me anywhere. My friends used to ask me how do I do it? and where do you get the energy from? I used to tell them it was easy for me because of the thrill I got from cycling. For instance when cycling I became more aware of the breathtaking surroundings around me such as the wondrous colours of the fields, the sky with it's shaping and often descriptive clouds informing me what weather to expect. The gentle breeze in my face and the fresh air in my lungs giving me that wonderful sensation of being alive. It always surprised me to see so much wild life like rabbits, field mice, pheasants scuttling across the roads, and the beautiful butterflies bobbing about in the warm air. I began to notice more cyclists on the road who seemed to whiz past me like there is no tomorrow. When cycling along the river banks from Fulham to Richmond I would notice the many boats, barges, swans and birds, as well as the many artists engrossed in their paintings. There would be crowds of cyclists gathered together enjoying their lunch before their next trek down the line.

When I finally passed my driving test, it was only then that I realised how much I missed the wonderful aesthetic world that god has created, due to the concentration needed when driving. I suddenly realised that the music had stopped, my hubby was looking at me questioningly and asked me where had I been for the last hour or so. I told him where my memories had taken me and it brought it all back again for him seeing me on my peugeot bike.

We sat down and had a cup of tea reminicing of our days together ten year's ago, laughing at the fun sides of our life and some not so funny times like when we went to Florence, Italy. We somehow got separated in the local market, it took us at least 2 hours to find each other, because I had stepped out of the market and wondered down a side street, therefore getting lost. We did not laugh at the time but we now see the funny side of it. Then he remembered when I had to go in hospital for a major operation. I woke up from the anesthetic to see a lovely basket of three teddies staring at me and my hubbies eyes longinly looking at me. I was so moved by his love and warmth that when I got home this is what I wrote to him:

Inspired By The Basket Of Love

The operation sought to heal my womb from contamination,

coming out of the anesthetic there was this sudden realisation,

a vision that seemed so real, a basket cradling three white fluffy bears,

their dark eyes stared lovingly at me, and as I awakened there were yet

another set of eyes so longingly looking into mine, ridding me of any fears.

There was Ed so loving and caring

he brought me the bears with the thought of repairing

the wounds that would heal in time.

Sometimes I forget the precious moments of spontaneity

then I remember the days of fragility,

we fought and forgave, we wept and laughed, we resented yet supported each other,

and again we looked at the bears looking back at us as if to say that moment meant so much to you and your lover.

And yes we will always be the bears, but you are still you.

Ed and the bears are with me today,

still giving me that longing look of love

which was cherised that time in the hospital bay.

Ed was very moved by these words and still is today.

We spent the rest of the evening just holding hands and occasionally looking at each other, both feeling happy, calm and contented. I felt then that I wanted to talk about how my health started to change leading up to my diagnosis of HepC, but I decided not to as we were both pleasantly tired and needed to sleep.

My world of HepC will be my next entry.

Marie

Covent Garden Gathering

At last I have got here, took all day with help from Ed and although I am very tired I am quite excited about writing my blog. On that note I would like to thank Minerva for offering to help me with this blog, I know that I can call her for help if needed in the future.

I don't really know where to start so I will begin with Saturday's Event at Covent Garden which was so memorable.On the train to London I was nervous and apprehensive of meeting the group from the forum, I suppose it had more to with how I see myself, as I am a little self-conscious.

When Ed & I arrived we were so early that we went and had a continental breakfast which went down really well. Ed then had to leave me to go to another part of London to see his friend so as I was still 45mins early I decided to look around the market before meeting the group. The market was fantastic, displaying hand painted glass and masses of silver jewellery (just up my street) and beautiful candles and also hand painted scarfs. I was in my element there, only problem was one needed to break the bank in order to buy anything. Sadly my bank could not cater for my needs, but I had great fun just looking.

I need not have worried so much about my own feelings because when I arrived Carol, Martin and a few of the others from the forum were there to greet me and introduce themselves to me. My fears were immediately relaxed as everyone I talked to were so warm, interesting and inviting. At first we all stood around in a bunch taking photo's of each other and the group then someone suggested a cup of coffee which was a huge relief as I am not too good on my pins these days.

It was great meeting Jason for his witty and funny sense of humour, Minerva because she is also a warm person, and her warmth shone over us like a bright shining star. Minervas beautiful daughter who is an inspiration to her mum and supports her all the way, and Guy who was extremely welcoming. I had fun with Tonelsh particularly when taking photo's of his lovely smile (ooops & Jasons) what a lovely guy. I enjoyed sitting opposite Carol & Martin and having a good old chat with them, they are so easy to get on with and are very accommodating.

I admired the fact that Brix came all the way from Switz. to meet everyone and celebrate her SVR even though some of her friends told her not to come. Brix is a lovely lady and I had an interesting talk with her. I did not seem to get around to saying much to SimonJ, Wolfie, Carmen & daughter, and Ron & his wife Carol, but they looked like they were really enjoying them selves.

It was about 2.30 in the afternoon and as much as I wanted to stay and look around C.G I had started to worry about travelling back especially with my fear of trains. I said my goodbyes and got to C.G station only to find it closed due to overcrowding.

I then proceded to walk to Holborn station, boy were my legs weak. I phoned up Ed who said he would meet me at Liverpool St to travel the rest of the way home with me, this was a huge relief for me.
When we got home we were greeted by a wailing, where have you been all day....Tommy the cat who behaves like he has not seen us for a week. He is a beautiful, affectionate and loving cat who came from a cat rescue, he is our baby.

For the rest of the evening I chatted & chatted about my day to Ed (must have been so frustrating for him) but on the other hand he is a good listener so I found it hard to stop myself. I will never forget the day and look forward to the next one.

Marie