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Tink's journey with Hepatitis C

Tuesday, May 24, 2005

8th down - 40 to go

Yes, I did my 8th injection yesterday - the weeks seem to fly by.

I travelled down to London on Monday morning and went straight to the hospital to do my blood tests. I then met up with Beverly who is over from the States and we had lunch together. We went to Carluccio's in Covent Garden - it was super catching up with her, we had a good natter and a darn good lunch at the same time. As we were leaving the great man himself sat in the corner counting his money....

I went back to the hospital and met with the Professor. He's very pleased with the way everything is going - he's quite surprised (and delighted) at how well I am looking. He said that I'm feeling better because the poison is doing its stuff and my liver is now functioning normally. Anyway, the blood results looked good enough for me to go back up to 1000mg of Ribs which I'm delighted about. We plan to meet again in one month and that will be for my 12 week test. He's absolutely convinced that there won't be any sign of the virus. I am feeling wonderfully optimistic.

I stayed overnight in London and pampered myself with a full body massage and facial this morning. I almost floated back onto the plane.

I am meeting a fellow local Hepper tomorrow for coffee. I'm really looking forward to that.

Tuesday, May 17, 2005


Breaking down Barriers

I did my 7th injection yesterday. Slowly slowly kills the monkey....

Andrew called me at about 10am this morning to say that he had just been 'stopped' at the coffee machine. My article has been published! I went and bought a copy of our weekly broadsheet and there on page 10 in 2" black print it reads "Aim to help hepatitis C lose stigma" with a picture of Andrew and I and a further title 'Breaking down Barriers' followed by my article. I had included an email address as well as a PO Box address so I hope any other local sufferers (or indeed anyone else) will contact me.

I also popped into the surgery and picked up my blood results. My haemoglobin still remains well under the reference range but has moved up a tad from 10.1 to 10.3. Professor says I have to stay on the lower dose for the moment. All the other results though are good.

Nothing much else to report - life goes on!

Monday, May 16, 2005

The Article

Aim to Help Hepatitis C Lose Stigma

Breaking Down Barriers

I am writing this article for all those people here on the Isle of Man who, like me, have been diagnosed with a life threatening disease that they can’t tell anyone about. Why? Because there is supposed to be a stigma associated with Hepatitis C, the virus known as the Silent Killer. Hepatitis C is a blood-borne virus that affects the liver causing inflammation. It kills cells within the liver so that the organ starts to lose its ability to work properly which can eventually lead to cirrhosis and liver failure.

When I was diagnosed recently, I was advised that it was perhaps in my best interests not to tell anyone and perhaps even to consider having my treatment in Liverpool so that |I would not be seen to be having treatment locally. I’m not sure why there is a stigma attached to this disease but I would compare it to the early days of HIV/AIDS which was then seen as a highly stigmatized illness because of its associations with sexual and drug use behavior. Pamela Anderson is currently campaigning for more Hepatitis C awareness as she caught the virus from sharing a tattoo needle with her husband. The UK Government too are currently campaigning for improved awareness.

I can’t tell you how scared and lonely I felt when I was diagnosed – even though there was a room full of people and my husband was by my side. I thought, “This can’t be happening. Why me?” I was told that the treatment was horrendous. It meant having a year of chemotherapy and coping with the potentially severe side effects at the end of which, for my type, there was only a 50% chance of success. There was no way I could feed myself that poison.

At first, I lived in denial. I didn’t believe it was real. After all, I didn’t feel that bad. I had gone to the doctors complaining of fatigue and general irritability and it was originally diagnosed as Glandular Fever. It was only after several more blood tests that the Hepatitis C test came back as positive. It quickly transpired that I had a blood transfusion in Canada in 1983 – prior to blood being tested from donors – and I had inadvertently contracted the virus. It has been with me for all that time. I still don’t know why it has waited so long to show itself. Maybe I was a bit stressed out at work, who knows. This is the worrying fact about Hepatitis C. You can have it and not know about it. To think that it had been in my body for 23 years and completely undetected amazes me.

I remained in shock for a long time. I was also angry and frightened and I still could not believe this was happening. My husband was incredibly supportive. He was with me at every hospital visit and was very reassuring. He did quite a bit of research on the internet and tried to encourage me to do the same but I was too scared to read what it had to say. I could not face reading what was going to happen to me. I remember my first words to the Consultant were “Am I going to die?” I had to take things very slowly. I couldn’t tell anyone so everything just went round and round in my head. Eventually, I was bursting with a million questions and because there was no one I could talk to, I started to look at the relevant sites on the internet. I am fortunate in that I am computer literate and have easy internet access and I have to say that it has turned my life around. There is so much knowledge out there and the information about my disease is the sort that talks to me in a language that I can understand. I am now able to communicate with other sufferers and this means we can compare notes. I don’t have to worry on my own if I get a new symptom because I have an army of people who, like me, are going through exactly the same process.

I started my treatment six weeks ago. I inject myself once a week and keep the drug topped up with oral medication every morning and evening. At the moment, I am coping well and not experiencing too many side effects. Whilst I am not able to work, I do keep myself busy and feel very upbeat and positive. I have regular massage to help remove the toxins from my body and, of course, I have the close support of my family and many dear friends both locally and on the internet. Medical science is still grappling with this complex disease so I do recognise that I must help myself in order to help them. If you have been diagnosed and want to share your experience please contact me on tka5@hotmail.com or write to me at PO Box 23, Douglas, IM99 3HJ.

The Facts
Hepatitis C virus (HCV) is classed as the fastest-growing infectious disease and this upward trend is set to continue. If it does, by the year 2010 we can expect many thousands of people to have developed HCV- related cirrhosis, with many requiring liver transplants. It is an epidemic problem. Infection with the hepatitis C virus is common, and there are around 170 million people worldwide who have contracted this virus.

Up to half a million people in the UK have hepatitis C, but as many as 90 per cent of these may not even know it. Health experts are warning of a hepatitis time bomb that could explode, as most of those infected caught the disease before 1989, but it can take 20 years for symptoms to emerge. The Institute of Liver Studies at King’s College in London says that cases will quadruple over the next 10 years and will peak in 2015. New infections are falling as more people become aware of the illness.

Symptoms include abdominal pain, nausea, fatigue and jaundice but many patients do not develop symptoms until severe liver damage has occurred. Up to 30 years after infection, liver inflammation, cirrhosis and liver cancer can also develop. Most of those infected contracted the virus through contaminated blood transfusion before screening began in 1992, or by intravenous drug use. Other routes for infection are unsafe sex, tattoos or body piercing.

The disease can readily be detected by a simple blood test.

The Department of Health in UK launched an awareness campaign in March 2004.
For more details visit:

(The Facts para was proofed and modified by my Liver Specialist)

Monday, May 09, 2005

6 down- 42 to go!

We got back from holiday this morning and I have to say the break has done me alot of good. I feel very relaxed and rested and my appetite is back to normal - believe me, I am making up for all those skimpy meals of late!

I nearly didn't get to go..... we flew over to London en route to Fuerteventura and I popped into the hospital for blood tests before we flew on. The Professor called me during the afternoon to say that he wasn't sure he was going to allow me to fly as my haemoglobin levels were at danger point. A few choice words went through my head and after a long discussion he finally relented on the flight but reduced my Ribavirin dosage by 200mg. I was simply not getting enough oxygen which he thought would be exacerbated by flying. In the end, I was fine and I have to say that after a week on this lower dosage, I am feeling totally back to normal (which is probably why I am eating like a horse).

We stayed at the Golf Club in Fuerteventura - an oasis of tranquility. We did not even know the election results until we got back (no English TV, no papers.....). Just relaxing in the sunshine has done me a world of good. I managed to walk several miles a day, eat healthily and of course, stick to water.

We arrived home this morning and I went straight along to my local hospital for more blood tests. The Prof wants to put the dosage back up just as soon as he can. I have just done my 6th injection and I wish the blood tests were as easy. I have very small veins and everyone struggles to find a vein big enough. The lady at the London Hospital hit a nerve last week and it felt as though I had been hit with lightening - it's put me off a bit.

There was a message from the Newspaper....they are coming along tomorrow to take photos of us re the article. So I am sitting here wandering what expression I should use .. happy, sad, ponderous. I’ll think on it…..