Les's Story

How did you find out you had hepatitis C?

I was told by my treating haematologist that I had non-A non-B hepatitis. At the time it didn't seem a really big deal for me, and possibly the medicos, as I had already been told I was HIV positive. During my adolescence and as a teenager living with severe haemophilia my life had already been thrown up in the air, and then I was trying to - and having to - cope and come to terms with the diagnosis and bleak future that I had been dealt.

At the time the stigma/hysteria and fear/lack of knowledge associated with HIV was a huge fear for me and my family. As a result we have been very private and select in who knows about my situation.

The years passed and then a test was developed. It was then recognized as hepatitis C and was more serious than first thought. More was learnt about the virus and now we know that hep C can have severe implications for the liver long term, especially if you are co-infected with HIV.

How has hep C affected you over the years?

Hep C and HIV are constantly in my life and it can be challenging but I try to go about my daily duties in a positive way as best I can. My life is already altered due to haemophilia and the mobility issues caused by the repetitive bleeding into joints over the years, and as a result I suffer from chronic arthritis and joint pain. The many joint bleeds have also led to joint deformity and I suffer limited joint function.

I am no longer working; physically my body could no longer handle it. My home life is great and I do have a good social life. All relationships have their ups and downs and I have to say there have been a few troubled times over the years - not surprising with the extra baggage.

But our relationship with all the hurdles is still strong. We as a couple and a family have a way to deal with it on a daily basis.

Have you had hep C treatment?

I have been on the treatment for Hep C but I only got to week 12 as I did not show a negative HCV PCR result. This test showed the level of hepatitis C virus (HCV) in my blood after 12 weeks was not low enough to continue, and was an indication that the full treatment program was not likely to be successful.

In a way it was a good thing as the side effects of the drugs caused me and my family a few issues - the irritability was the most troublesome problem. But it was disappointing not getting to week 48 and having a chance to clear the virus and have one less chronic condition to worry about!

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

I guess it's not only being hep C positive but having HIV and haemophilia too. If you have it all dumped on you, you have to find a way of coping as best you can, and not dwell on it, but accept it all and try and live with it.

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

My family and my contacts within the haemophilia and bleeding disorders community have helped me. Peer support groups are really important too as they are the only ones that know what it is like to live with multiple chronic conditions.

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

I'd like to remain as well as I can and be around as long as possible for my family.

I will consider re-treatment with the current or up and coming treatments to have another crack at clearing the virus.

 

*"Les" is not the author's real name
Last Updated: 15th May 09