Infected with Hepatitis C, Gill Fyffe charts her journey back to life

Complications during labour had led to the placenta requiring a manual extraction and Fyffe lost a substantial amount of blood. Afterwards the doctors said she needed a transfusion. Fyffe was understandably hesitant. It was October 1988.

"Beyond the hospital walls, the world is going crazy about Aids," she writes in her forthcoming memoir Life Blood. "No one HIV positive dare reveal their condition. Homosexuals are demonised. Special mouthpieces have been manufactured so that paramedics can avoid contact during mouth-to-mouth resuscitation.

"Children with grazed knees may not swim in public swimming pools. Classroom packs of latex gloves ensure teachers need never touch their pupils. You are not only sleeping with your lover, but with all his previous lovers. The advice is clear. If you don't want to die of Aids, avoid contact with blood."

Dundee-born Fyffe, then 29, recalls how one of the nurses treating her confided that she herself would refuse a transfusion. Or, to put it bluntly, wouldn't touch one "with a tarry barge pole". "It's not only HIV you have got to worry about," the nurse told her. "There's hepatitis and God knows what."

But Fyffe wasn't in a position to say no. Without the four pints of blood she badly needed, her strength was fading. It reached the point where she was in such a weakened state that she required someone else to hold the telephone receiver while she called her husband.

The die was cast. She remembers the nurse who administered the blood packs snapping a pair of latex gloves around her wrists in sharp contradiction to the doctor's reassurances that the risk of infection was "negligible".

Sitting across the table of an Edinburgh cafe in the present day, Fyffe, 55, recounts what happened next. For the next seven years, Hepatitis C lurked undiagnosed in her veins. With hindsight, there were tell-tale signs in the painful blisters which pricked her skin, the lingering, crushing tiredness and blackouts that on one occasion became so severe that a fatigued Fyffe crashed the family car.

"Taking responsibility is something really important to me so when I was tired I felt a great sense of shame," she says. "People would say: 'Oh, but you've got two children' and that only made me feel more ashamed because other women had two children, were working and coping fine with both."

It wasn't until the letter from the Blood Transfusion Service arrived advising she should seek medical help that it began to make sense. Its contents were akin to opening Pandora's Box.

"As soon as I read the letter I felt certain I was infected," she says. "It took a bit longer for it to sink in for my husband. The conversation was quite rational up to that point, but when I realised the children might be infected I lost it. I was in complete panic."

Fyffe immediately requested blood tests for the family. Her children and husband's results were negative but Fyffe's came back as inconclusive. It was, she admits, a bittersweet moment. The overwhelming relief that her loved ones weren't infected was tempered by the growing knot of anxiety in the pit of her stomach regarding her own fate.

There soon, however, came confirmation of the news Fyffe had feared: she had contracted Hepatitis C from a contaminated blood transfusion.

Her story is sadly not unique. Fyffe is among an estimated 4000 Scots who were similarly infected with "bad blood" during the 1970s and 1980s, although some believe those figures could be significantly higher.

In January 2005, our sister title the Sunday Herald reported that blood from Scottish prisoners continued to be used in NHS transfusions during the 1980s despite serious concerns that the practice was unsafe.

Confidential minutes from meetings held by directors of the Scottish National Blood Transfusion Service also showed the agency was taking blood from American troops and that doctors knew in 1981 the blood they were buying in from the US was contaminated with at least two forms of the hepatitis virus.

The Penrose Inquiry was set up by the then Cabinet Secretary for Health and Wellbeing Nicola Sturgeon - now First Minister - on April 23, 2008, to look into the circumstances in which patients treated by the NHS in Scotland became infected with Hepatitis C, HIV, or both, through contaminated blood.

Lord Penrose was formally appointed on January 12, 2009, but the inquiry - a key commitment in the SNP's 2007 manifesto - has suffered numerous setbacks including the process of sending warning letters to those being criticised in the final report taking longer than anticipated. Costs have also spiralled from the initial £3 million to a reported almost £12m. The long-awaited final report of the Penrose Inquiry will be published on March 25.

Fyffe and her husband Stan, 58, were living in St Andrews with their children, Rory and Lucy, when she was diagnosed. "There was a stigma about Hepatitis C and I was advised that I might not want to tell people about my condition," she says. "We decided straightaway that we wouldn't keep it secret because that is a craven way to live and I didn't want to lie to my children.

"We were always completely open about it and you could see some people weren't happy about that. I was always fairly understanding about that because I felt that if it hadn't happened to me and it was someone else in the situation I might have been uneasy about it too."

The debilitating nature of the virus and subsequent side-effects of drugs used to treat it meant Fyffe had to give up her university teaching job. With the family reliant solely on Stan's income as a civil and structural engineering consultant, their once comfortable middle-class life was replaced by perpetual money worries.

"I made various attempts to go back to teaching but was always too exhausted and had to give up," says Fyffe. "We not only lost my salary but my husband's income dived as well because he was self-employed and having to cope with me being ill.

"We got very poor. My son remembers what he calls 'the mouldy vegetables trips' where we would wait until the supermarket was just about to close then rush in and buy all the reduced priced vegetables. There was always some you had to chuck away because they were mouldy."

As Fyffe's health deteriorated and their finances dwindled, the couple faced a crossroads. "My husband and I both had university educations, professional jobs and all the usual aspirations," she says. "We decided that we couldn't have all of that any more. We could either spend the money on legal fees to try to get redress, on private medicine or on the children's education. But we could only choose one of those because we weren't well enough off to do anything else."

Education won out and they made the decision to send their children to boarding school at Fettes College in Edinburgh where Rory and Lucy had both won bursaries. Fyffe, her voice cracking with emotion, admits it wasn't easy packing them off aged 12 and 10 respectively.

"At that point we thought that the outlook was bleak," she says. "We believed I had a short life expectancy and would end up with liver failure. We just wanted to get our children in as good a position as we possibly could. I was going to become more ill which would be awful for them."

Looking back, Fyffe feels vindicated. "It was the best thing because the legal fees would have been a complete waste of money because we now have public inquiry that has taken 25 years," she says. "I was also happy with my NHS treatment. The contamination of the blood supply was not the fault of the doctors and nurses who treated me."

It took almost four years after her diagnosis for Fyffe to get the all clear. An initial course of the drug Interferon was unsuccessful and she was told that nothing else could be done. It was only after much lobbying that the doctors relented and she was given the chance to sign up for a treatment which combined Interferon with another unlicensed drug Ribavirin.

"I signed away my medical rights and became one of the people on that trial," she says. "That cured me. I had a year of treatment but I knew about halfway through I was getting negative results. Five years later I read in the newspapers they had developed an even more sensitive test so I went back to the clinic and asked if I could get it. That was negative too."

Fyffe is frank when asked about the impact her illness had on her relationship with her husband. "It became a marriage built for adversity," she says. "Once I was cured, offered another teaching post and we had paid off all our debts that was when the marriage ran into trouble. It was still the marriage built for adversity but everything else had changed.

"We always had a good relationship but suddenly, when we were able to have the frivolous things in life again, we couldn't cope with it. We no longer needed it to be the marriage built for adversity, we needed it to be a normal relationship."

It took time, says Fyffe, to adapt to a new rhythm of life without the fears which surrounded her Hepatitis C looming large in daily life. "We have a super strong and happy marriage," she says. "We're just normal and like any other couple our age."

Yet, while she won the battle, the war still rages on. Fyffe suffers from photosensitivity, a condition which she believes is a side effect from the Interferon taken to combat her hepatitis. Her skin breaks out into a painful rash or severe burns even after limited exposure to the sun and certain types of light.

When we meet on a cold winter's day with clear blue skies and bright sunshine, Fyffe arrives holding a newspaper to shield her face as if in the midst of a sweltering heat wave. "I could face the sun for about five seconds on a day like this," she says. "If I faced the sun for half an hour or more, the skin on my face would start to swell and break up.

"It's an autoimmune reaction. I can't use a computer and strong sunlight bouncing off glass and buildings can also cause it to happen. The redness takes two or three days to go away. I feel shivery and ill when it happens. There isn't a cure, it's simply a case of managing it."

Her face in particular has to be kept beneath a protective layer of special creams, a soft scent of emollient filling the air around her. "Basically the drug boosts your immune system but it doesn't necessarily come back down afterwards," she explains. "Anyone who has asthma or eczema already has a slightly overactive immune system.

"I had eczema when I was a child so was a prime candidate for this to happen. I already had a slightly overactive immune system and it got boosted sky high. It then tips into autoimmunity."

After her Hepatitis C was cured, Fyffe had taken a job teaching junior Latin and A-level English at Fettes College. Her photosensitivity meant she again had to give up work and the family returned to the frugal days of financial belt-tightening.

When their son Rory went on to study physics at Imperial College, London, while daughter Lucy won a place at Oxford University in fine art and later English language and literature, Fyffe and her husband relocated to London to save on accommodation costs.

"The children's education was what was important to us and we didn't mind giving up other things," she says. "We have been on an incredibly tight budget for a long time but at least it's been to a purpose. The background we come from you need two incomes to do all the things you would like to and only having one has been difficult." Fyffe laughs, trying to lighten the mood. "At the moment we pretty much have the clothes we stand up in."

Asked about the likelihood of financial recompense for what she has endured, Fyffe shakes her head. "I personally don't think there will ever be compensation," she says. "I know there will be a lot of people in desperate need of it.

"I have become defiant about not having a salary otherwise it would just be a life of constant regret and thinking: 'this isn't fair.' Sometimes I slip into 'this isn't fair', but my children are good at reminding me I never let them say that. I think there are so many people infected that there won't be compensation. The numbers are against it."

Fyffe is sanguine about her hopes for the findings of the Penrose Inquiry due to be delivered in 10 days time. "Having to give explanations that don't have official backing and living with misconceptions is exhausting," she says. "To have someone say: 'a mistake was made, we did our best, but the treatment has side effects' would show respect to the people this has happened to.

"If they decide that mistakes were made, then I think it will feel like breathing oxygen again because I won't have anything to prove any more."

Life Blood by Gill Fyffe is published on March 23 by Freight Books, priced £12.99. The author will be at the Aye Write! book festival in Glasgow on April 18. Visit ayewrite.com