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Patient Support Officer Colin Sim's Story

Colin Sim

I am now in my mid-fifties and have been living with hepatitis c for 30 years and more.

I was diagnosed after a routine check up in 1993. The information and advice given back then consisted of ‘well you have hepatitis non A, non B, there is no effective treatment but don’t worry, just get on with your life’.

After a further series of tests it was determined that I had hepatitis C genotype 1A, early cirrhosis and a viral load of 6 million. I undertook the interferon mono treatment in 1995 but unfortunately after an initial good response failed to clear the virus at 48 weeks. The treatment left me feeling exhausted, angry and despondent.

I kept attending my regular clinical checkups and gradually learned to take better care of myself while living with the virus. I devised a healthy diet, slept regular hours and above all stopped drinking alcohol.

In 2002 I decided to try the combination treatment of interferon and ribavirin. Again after an initial good response I failed to clear the virus at 48 weeks. It took me quite a few months to recover from the effects of treatment and there were some quite bleak days. However with help, support and a fairly healthy lifestyle, my health and quality of life improved to the point at which I was reasonably active, happy and positive for much of the time. And this was how things stayed for many years.

Fast forward to September 2011 and opting for treatment for a third time, I started a drugs trial at Chelsea and Westminster hospital. The trial consisted of triple therapy with pegulated interferon, ribavirin and a protease inhibitor – BI2001335, a similar drug and regime to telaprevir in that I would start on triple therapy remain on this for twelve weeks and continue on dual therapy with peg interferon and ribavirin to week forty eight depending on my initial response to the treatment.

Before starting the trial I was told that I had a staggering viral load of over 32 million, couple this with the fact that I had read obsessively about the potential horrible side effects of triple therapy, to say that I approached the trial with trepidation and some negativity would have been one the understatements of the year.

Nevertheless for better or worse, I have always been a very stubborn individual, sometimes causing extreme annoyance and frustration to those closest to me, and having agreed to do the trial, come hell or high water there was no way I was going to back out. For the first month I had to attend the hospital once per week to be prodded and poked, weighed, questioned and have an armful of blood taken out of me each time. I became convinced that my hospital were feeding a family of vampires.

As the days and weeks passed, slowly but surely the treatment began to take its toll, my walking became slower and slower, my breathing shallower and more laboured and skin problems more and more irritating; my patience with the world in general got shorter and shorter. My self-awareness was probably at an all-time low and it was only when boarding my usual bus to work one morning when the bus driver said “Oh no it’s the shouter again, I hope you are not going to start any of your funny business”, that I realised I had been quite regularly growling and snarling at fellow passengers. The driver was however grinning when talking to me, which was a relief and caused me to smile, all things considered it could have been a lot worse.

I fortunately have a supportive and practical partner who very soon learned to leave me to my own devices, as my life became more repetitive; go to work, watch TV, eat when I was able, then in bed by 9pm, she carried on with her own life seeing family and friends, which is the best thing she could have done in the circumstances.

At week twelve I was told that I had gone undetectable; I was dumbfounded, euphoric and filled with a renewed sense of purpose and determination, it was a case of “now that I know the treatment is working whatever difficulties lie ahead bring it on!”

There was a slight improvement on the side effects front after the trial drug was withdrawn, however there were still many difficult days when I struggled with making it into work. There were mornings when what I most wanted was to veg on my sofa, however I knew that if I did that I would most likely slump into a horrible depression. I am fortunate to have quite amazingly supportive and inspirational work colleagues at the Hepatitis C Trust and what with this and dealing with some equally inspirational callers to our helpline, who despite being in dire circumstance, some with failing livers, struggling to make ends meet with their benefits under threat, still found the time to wish me well. I was because of this, on most days able to return home after a day of work at the Trust with a deep sense of gratitude. At week twenty four I was still undetectable, I was a happy and satisfied customer and was coping better on treatment so all was well and good until 12 weeks later.

I received the devastating news at week 36 that the virus had returned and although bitterly disappointed it seemed at the time that I had to reassure the treating team at my hospital and close friends and family that I was not planning to slink of and slash my wrists. It was deemed pointless continuing with the trial as it was obviously not going to work and I was delighted not be taking interferon again.

Eighteen months later and tests have revealed that my liver is in reasonably good shape again and my viral load is relatively tiny compared to what it was before going on treatment. Despite what I have been through, I do not regret my treatment attempts and being the stubborn soul I am, I would do it all over again.

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