It is exactly a decade since Nicola Leahey discovered that she had contracted hepatitis C during a blood transfusion – but she can still recall the shock of being told.
The former NHS manager had no idea that she had been suffering from the condition for 30 years by that point – and the diagnosis explained the previously inexplicable symptoms which she had been experiencing for much of her adult life.
“I’d always been very tired and run down and had various problems with my skin – but the doctors just said it was because I had three young children and I was a working mother,” Nicola remembers.
“But by my mid 50s, I decided to take early retirement, because I felt that I was beginning to let myself down at work. My colleagues didn’t feel that way, but I was starting to use words like “thingy”, because I couldn’t think of exactly what was I trying to say.”
The 67-year-old, who lives in Chorley, now knows that she was suffering from the “brain fog” which many hepatitis C sufferers describe. However, the blood-borne condition – which affects the liver – can also lead to more serious and life-threatening complaints, like cirrhosis and cancer.
A nationwide inquiry into what has become known as the “infected blood scandal” is now exploring how thousands of UK patients contracted hepatitis C and HIV after receiving contaminated blood transfusions during the 1970s and 1980s. Around 2,400 people are so far thought to have died as a result of receiving the blood – and many thousands more are estimated to have been infected.
Nicola believes her problems date back to a transfusion which she received in 1980, after an operation went wrong and she was left critically ill in hospital for four months.
It was only when a friend who worked in pathology suggested that she should request a hepatitis C test – after her symptoms worsened to include bleeding, vomiting and bruising – that Nicola was finally diagnosed in 2009. That meant she was finally able to begin the treatment which, in her case, has been successful.
But it is the fact that she went undiagnosed for three decades – and the risk which that posed to her chances of survival and also to her family – which has led Nicola to call for automatic blood testing for anybody who received a transfusion during the affected period.
“My first worry when I was told was for my family and whether I had passed it on to them. I was trying to think of whether I had ever cut myself and bled on them – something simple which could have exposed them to the condition.
“And, of course, the longer you have it in your body, the worse it is and the more damage that can be done. I was fortunate that I’d never really been a drinker nor a smoker and that I’d kept myself fit.
“But they reckon there are about 10,000 people still undetected and if a doctor is seeing someone who had a transfusion in that period, I think they should automatically be getting them tested.
“I also want everybody who had a blood transfusion between the 1970s and 1991 to go and ask for a test themselves. I don’t want to scaremonger, but it’s important.”
The Local Democracy Reporting Service understands that a review was undertaken by the NHS in 1995 in an attempt to trace anybody who may have been infected during a transfusion. The UK Haemophilia Centres Doctors’ Organisation also conducted a look-back exercise specifically to find those with bleeding disorders who may have been exposed to contaminated blood.
Nicola pressed home her point about identifying people who remain unaware of their condition at the infected blood inquiry, where she appeared as a witness at a regional hearing in June. She describes that experience as “traumatic”, because of the human suffering which was on display. The inquiry has heard months of harrowing testimony from victims, including from the patents of a seven-year-old boy who died from Aids.
Nicola will travel to London to give further evidence in October and says that she has spoken to others who have been affected who fear that they will not survive to read the final report of the inquiry, which is expected in 2021.
But she adds that the treatment and support on offer today has moved on markedly in the 10 years since her own diagnosis.
“There was no counselling back then – but nowadays there is. The Red Cross were at the inquiry and they were brilliant – we can now contact them if we are in need of help.”
Even though she is currently clear of hepatitis C, Nicola has to be tested every six months, because there is a chance that the condition can reoccur. She has also been left with some of the original symptoms of the complaint as well as new ones such as digestion problems.
“I don’t like the word lucky to describe someone in this situation, but I have been fortunate in a way,” Nicola reflects.
“My liver hasn’t deteriorated too much and, as far as I’m concerned, the transfusion which I received saved my life.
“So I’m grateful for the blood – but just not what it gave me.”
SEARCHING FOR OTHERS IN NEED OF SUPPORT
Lancashire remains without the kind of local support groups which have sprung up in other parts of the country for victims of the infected blood scandal.
Nicola wants to put that right, but is currently aware of only one other patient in the county who has been affected. She now wants to find others in the same situation – or who fear they might be.
“If we can all stand together and help each other, that can only be a good thing – I’ve had so much support just by meeting others at the inquiry.
“You can end up thinking ‘why me?’ – which is quite understandable – but you’ve got to try to remain positive.”
Nicola can be contacted via her Facebook page – www.facebook.com/nicola.leahey.5
WHAT IS HEPATITIS C?
Hepatitis C is a virus which can attack the liver. Sufferers can go without symptoms for many years, but when they do occur, they can include flu-like feelings, loss of appetite and continual tiredness.
Left untreated, hepatitis C can cause cirrhosis of the liver and, in extreme cases, liver failure or cancer.
Treatment for the condition is now mostly in tablet form, having previously been a combination of tablets and weekly injections over several months – which sometimes caused unpleasant side effects similar to chemotherapy. More recent advances in treatment have made it more tolerable.
Hepatitis C is spread in the blood and could be acquired by sharing razors, toothbrushes or needles. Mothers can also infect their children during pregnancy.