Terry's Story 2010

How did you find out you had hepatitis C?

In the early 1990s, after the hepatitis C virus had been identified, we enquired at the hospital about being tested for it. To our surprise we were told that I had hep C, based on blood tests that had been taken years earlier.

Whilst it was a shock to hear this, it also explained much about how I had been feeling "out of sorts" since the early eighties.

Having a diagnosis meant that I could bone up on what hepatitis C was all about and what is required to deal with it.

How has hep C affected you over the years?

From the early eighties I had been feeling increasingly tired and unable to concentrate as well. I frequently needed to go to bed early each night so that I felt sufficiently rested to face work the next day. Despite this, by early afternoon it felt like I hit a brick wall - I felt extremely tired and experienced "brain fog".

Our social/family life suffered over many years because of the physical and mental fatigue - it was not uncommon for us to be last minute apologies for family/friends gatherings.

By the mid eighties I stopped working full time because of the effects of hep C coupled with ever increasing problems with arthritis.

Have you had hep C treatment?

In 1995 I was part of an interferon monotherapy trial. Unfortunately I suffered numerous debilitating side effects to the extent that I was advised to withdraw from the trial early. In view of this I decided to put hep C in the too hard basket and concentrate on my haemophilia and other chronic illnesses.

However, several years ago we began to hear of "combination therapy" and that it had been used on people with haemophilia. We decided to monitor the progress of this new treatment. After hearing of a few successful outcomes, we decided it was time to seriously revisit the possibility of treatment once again.

Last year I completed the combination therapy treatment and earlier this year was given the great news that I had cleared the virus. That moment was surreal, given that for the first time in my life I had been cured of a chronic illness, which in this case had affected me and my wife, family and friends for over thirty years.

If you have learned one positive thing from living with hep C, what would it be?

I guess I learned that like any chronic illness it helps to gain as much knowledge of the condition as possible so that you feel empowered to accept and therefore deal with it. I have never subscribed to the "why me" attitude as it only serves to drag you down.

Who or what has helped you live with hep C over this time?

I would never have survived the thirty years of living with Hep C had it not been for the love, encouragement and support of my wife who also endured so much of the side effects of my hep C. I also received much appreciated support from family, friends, the haemophilia community and many health care workers. My faith was of great comfort, particularly in times of self doubt.

What do you think is different about having haemophilia and hep C?

Having haemophilia teaches you to deal with many challenges such as the highs and lows that accompany the condition. With this background, you are more equipped to take on the difficulties that hep C presents. However, at times the combined effects of haemophilia and hep C can be overwhelming.

When you look to the future, what do you think is the most important thing for you in relation to hep C?

Over many years I have learnt that life is very precious. It is so much richer when you are surrounded by those you love and respect. Hep C has made me enjoy even more the basic pleasures of life.

To give is to receive and I feel I have received in spades.

*"Terry" is not the author's real name
Last Updated: 28th Oct 09