Woman who would trade all damages for return of her health

SHE HAS kept the piece of paper safely for 20 years

SHE HAS kept the piece of paper safely for 20 years. The £3 receipt from Holles Street Hospital, dated 1977, was going to go in a scrap book for the day her son turned 21.

It was the receipt for her anti D injection.

Three years ago Pauline Joyce had a different reason to look at the receipt. The same anti D injection that probably saved her son's life contained the hepatitis C virus, a particularly savage strain. It changed everything.

It was 1977. She was 27, married to a man she loved, with two children and everything going for her. But the virus took hold and she was floored by fatigue and unexplained pains which were never in one place long enough for a doctor to diagnose. She had had her first anti D injection in 1973, but the batch number was lost and she was unable to trace it.

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There was no test for hepatitis C then but when the anti D contamination scandal hit the news in February 1994, Pauline phoned the Blood Transfusion Service Board before the broadcast had ended.

"For years on end I though it was a question of going in and out of health shops and getting something to pick me up. I was willing myself right." Some told her she was "going off her head" when her doctor could find nothing wrong.

Some days she was fine and then a deadening fatigue would strike. Recently she asked her daughter what she remembered of her childhood. "She said `you were always sick', but she said I had been a great mother.

"Thank God, I'm blessed with a strong willpower and an inner feeling of importance. My role in life wasn't to lie in bed and feel sorry for myself when there were two children to look after."

She was one of the first women to have a liver biopsy and she remembers the date as easily as her children's birthdays, March 7th, 1994. The hospital reports are filed as carefully as the receipt for her antiD had been.

The first biopsy report found "chronic active hepatitis of a moderate to severe degree". Another biopsy two years later showed her condition had worsened. "The fact that there is a substantial change in the biopsy over a two year period does suggest that she has progressive liver disease."

She was referred to the hepatology centre in St James's Hospital. She talks about the experts there as friends as well as doctors. There is no anger now, but there was, particularly when one doctor told her she was carrying a "friendly virus".

"Even then I knew it wasn't friendly so I said to her: `Let's all share this virus. I'll throw a party on Saturday night. Bring all your colleagues, all the people you care about. But don't bring a bottle. Bring a syringe'."

As we talk she says that three days earlier she could barely walk. Her poor balance has left her housebound, unless her husband can accompany her. Her speech becomes slurred. By the end of the interview she is exhausted.

After her first biopsy she was put on the drug Interferon. She talks about that time as the worst months of her illness. When she was "in the throes of Interferon" Jane O'Brien telephoned her about setting up a support group.

Positive Action was born and she bowed out of the organising committee. "I could feel I was going downhill and the other girls were out there, working really hard together." There was a good camaraderie between them, she says, working to make the lobby group the force that it is today.

She remained on Interferon treatment for almost six months. "I remember lying on this couch, not knowing my own name or where I was." Now she takes iron and potassium, and medication for her kidneys. "I could go into liver failure at any stage," she says in a matter of fact way.

Last June she applied to the Government Compensation Tribunal and her case was heard just before Christmas. She is happy with her award, but not the term itself. "How can they call it an award. It's like `we gave you this so here's an award to make up for it'."

She would trade it all to be healthy. "I'd give them everything I have and go and live rough if they would take back the virus."

Like all those infected she welcomes the plans for aggravated damages, not because of the money but because it is an acknowledgment of negligence.

The money has given her the chance for a fresh start. After a weekend break in the countryside she and her husband decided to buy a house that was just at the foundation stage at the time. They will move in the next month and Pauline came across the antiD receipt as she was packing.

"I do with every day what I can. It's the same for everyone. But that thought is less likely to occur if you don't have a terminal illness. I want to use the house as a peaceful place."

Her later medical reports cite her admission to hospital suffering from an "acute confusional episode" last July.

She had been admitted earlier in the year with "further problems of disorientation and forgetfulness, nausea and apparently calling her son by a different name", the report said. "This had been going on for two to three days.

The doctors have not found any evidence of neurological damage, but say it could be a reaction to the Interferon treatment.

Beside the Lladro figurines and the ornate clock on the mantelpiece there is a BTSB china figure. It was presented to her husband, a regular and valued blood donor until he was informed by letter that they would not require his donations, due to his wife's illness.

Yes, she has felt like hurling it through the nearest window, but other times she talks to the figure, a pelican reaching down to two smaller birds. "I often have a chat at it: `You're a bird and you're feeding your young. It's not necessarily the fact of where it came from, but what it signifies - the blood of life feeding the baby, nourishing it to bring it on'."

Catherine Cleary

Catherine Cleary

Catherine Cleary, a contributor to The Irish Times, is a founder of Pocket Forests