Hepatitis C sufferer tells of close call

Andrew Orr with his mum Doreen

His luck held when he managed to kick the habit, thanks to a methadone programme which helped him put his life together.

But the luckiest moment of his life came five years ago when a "brain fog", as he describes it, forced him to hospital. A blood test soon proved what he had suspected might be the problem - hepatitis C. The lucky part is that if he'd left it much longer, he would now be dead.

"They told me that if I'd left it another year before getting a blood test and the diagnosis then my liver would have been too bad and the treatment wouldn't have worked," he says.

"I'd have been unlikely to get a transplant as the problem was self-inflicted and there would have been many more deserving cases on the waiting list before me. In fact, they said that I would have been dead within five years."

Andrew, a foreman joiner from Bo'ness, speaks matter-of-factly about such a shocking moment, but he knows how fortunate he has been.

"I contracted the hepatitis C virus from swapping needles when I was taking heroin," he says. "I think when you've done drugs you're always wondering if it will catch up with you at some point, and it did.

"I was running a building site and I'd noticed that my concentration was going, my stamina had gone and I just felt really run down all the time. I knew there was something wrong.

"I thought it might be something like hepatitis but I kept putting off going to see the doctor about it. But one day it was so bad I just went straight to the hospital and they did a blood test and told me it was hep C. Even though I'd been expecting something it was still a real blow to hear it."

He adds: "The main problem is that there can be no symptoms. Some people can turn yellow and have real physical signs. For me it was a lack of concentration, like having a brain fog.

"My memory was going and I wasn't doing the simplest of things right anymore. You know in yourself there's something wrong, even if there are no outward signs to anyone else, and that is the reason why people should get tested because it's easy to have it and not know."

That is certainly the message the Hepatitis C Trust, which recently opened an Edinburgh office, is trying to get to people, as last year the number of cases of the potentially fatal liver disease reached record levels in the Lothians.

The total number of sufferers in the area is now almost 10,000 and experts are predicting that will continue to rise as the virus can lie dormant for up to two decades, eventually catching up with people who dabbled with drugs.

Indeed, the majority of people who test positive for the disease are thought to have contracted it, like Andrew, through injecting drugs, but it is possible to catch it in other ways.

While around 1000 recorded patients in the Lothians admit they do not know how they caught it, 300 cited "other" reasons which included tattoos, sexual intercourse and even inheriting it at birth.

"It sounds strange but actually the more diagnoses there are, the better," says a spokeswoman for the trust. "The biggest danger is those who are off the radar. You can't afford to wait until you get ill with hepatitis C to begin the treatment - the damage to the liver can be too much.

"The NHS and the Hepatitis C Trust have been doing a lot of outreach work to get to drug users and hopefully the numbers will eventually come down once we get more people screened."

While some people suffer from pains in the abdomen, aches in their joints and sharp pains across their liver, many have other signs which can too easily be dismissed. Like Andrew's "brain fog", these include concentration problems, poor memory and difficulty in completing complex mental tasks. Another common complaint is chronic fatigue, but all can be countered with the correct antiviral drug therapies.

"It all works sort of like chemotherapy, suppressing your immune system so the drugs can work to tackle the virus," says Andrew. "It can make you feel permanently ill, but it's obviously worth it in the end to get rid of the virus. However, for me it also caused depression, which meant I ended up having to stop work."

According to the trust, dealing with a hepatitis C diagnosis can have a huge impact on mental health.

"Developing and maintaining a positive mental attitude is perhaps the single most important thing a person with hepatitis C can do for themselves," says a spokeswoman.

"The messages we tell ourselves dictate not only our moods and behaviour but can also have a powerful impact on our physical condition. Evidence suggests that many people with long-term chronic illness who are able to maintain a positive attitude experience a slower progression of their condition and often show better responses to treatment.

"The people who live most successfully with the virus are the ones who have reached an acknowledgement of the virus in terms of treatment, diet and lifestyle but do not let it restrict them from the life they would otherwise choose to live."

Andrew is still trying to achieve that equilibrium. "I have to watch what I'm doing to ensure I don't damage my liver.

"I'm diabetic so I don't eat a lot of rubbish, so that helps, and I don't drink alcohol anymore, either. My liver is getting better slowly but surely and there's now no sign of the hepatitis. Now I just need to tackle the depression and hopefully get back to work.

"The one thing I would say though is don't put off getting a blood test. I was lucky, I didn't leave it too long."

For more information, contact the Hepatitis C Trust on www.hepctrust.org.uk or C Plus on 0131-478 7929.