Living with a time bomb

 

"MY DOCTOR used to call me his mystery woman. I was back and forth for all sorts of things: tiredness, bad throats, glandular fever. My liver test came back abnormal, but they didn't know why. I was looking well, but there were days when I couldn't get out of bed. When people can't see anything physically wrong with you they don't understand that you're ill."

Paula Kealy is 40 and her liver is now damaged irreversibly. She has scarring and some of her liver cells have started to die. "Basically, I'm looking at early cirrhosis already," she says, in an amazingly cheerful and resilient voice. "I have to see a rheumatologist because I also have signs of an auto immune disease."

Other symptoms include fatigue, joint pain, deteriorating eyesight and skin irritation. "There is no treatment they can offer me," says Paula. Her liver condition did not improve after a year on the drug Interferon. "The scenario for me does not look good."

Paula, who comes from Dublin and now lives in Kilkenny, is one of 1,000 women who were given the contaminated Anti D blood products between 1977 and 1991 - half of these women have the Hepatitis C virus. The rest have tested positive for Hepatitis C antibodies. Like most of these women, Paula's Hepatitis C dates back to Anti D administered in the seventies, and is of the type least responsive to treatment with Interferon.

Anti D immunoglobulin is given to women with Rhesus negative blood who have just given birth to a baby with Rhesus positive blood, to prevent haemolytic (blue baby) disease. Paula's second and third child were born in 1977 and 1978 respectively. On both occasions she was given Anti D.

After the second of these births, she was very tired and did not feel "right". She was told it was post natal depression. Because she had a five year old child and two babies, she assumed her exhaustion was only to be expected. However, her health continued to deteriorate. Because Hepatitis C was only identified in 1989, and a test was not developed until 1991, the doctors were baffled by Paula's condition.

By May 1992, after her second liver biopsy, Paula was diagnosed with chronic active Hepatitis C. "The doctor told me my liver was inflamed, and I had a virus. I was told there was treatment available, and I would be fine. I was taken into hospital for a week and shown how to inject the Interferon, and then sent home on my merry way.

She was told that the lnterferon might cause "flu like side effects", but "I have never experienced a flu anything like what I went through". On the days after she injected herself, she felt so ill and tired that she couldn't get out of bed. Her hair started to fall out. Her body ached from head to toe. Her skin, where she was injecting herself, became sore and developed a rash: "Sometimes I felt so terrible I went to my GP and just cried." After a year of this, Paula's liver had not improved.

ACCORDING to Dr Michael Whelton, consultant hepatologist at Cork University Hospital, the type of Hepatitis C which Paula has, along with 90 per cent of the other women, shows a low rate of sustained response to Interferon: at most, 25 per cent.

Jane O'Brien, the indefatigable chairwoman of Positive Action the support group for the women who were infected by the contaminated Anti D, says about 100 are on Interferon treatment, but "we aren't aware of any women who were infected in 1977/1978 who have shown virus clearance as a result".

Nevertheless, recent evidence suggests that women who take the Interferon reduce their chances of developing liver cancer later on, Dr Whelton says. "Taking the Interferon gives the liver a rest even if the person hasn't been cured," he adds.

Nearly all the blood that leaves the stomach and intestines must pass through the liver. The liver has many functions, including the production of clotting factors, blood proteins, bile, and enzymes; the metabolism of cholesterol and the storage of energy to fuel muscles. Cirrhosis of the liver describes a condition whereby the normal functioning of the liver is handicapped.

Dr Whelton notes that cirrhosis can lead to liver failure, thus necessitating a liver transplant. Because the Hepatitis C virus can survive outside the liver, in the blood cells, it will reinfect the graft but, he adds: "The new liver will work well, even if it is reinfected."

Apart from fatigue, people are usually relatively symptom free from Hepatitis C until 20 years or more after they are infected. Liver damage occurs "silently", leading to the eventual risk of cirrhosis. It is perhaps another ten years before the risk of liver cancer comes into play.

HOWEVER, Mary, a Dubliner who does not want her real name used, has Hepatitis C from contaminated Anti D that she received in 1991. In the last six months alone, Mary's condition has worsened rapidly, from mild to moderate chronic active Hepatitis C: "For most people the Hepatitis C takes decades to create severe damage, but for some, like me, it goes very fast."

She is now on sick leave from her job and taking a combination of Interferon and Ribavirin: "I have to inject myself, deep under the skin, three times a week." The one consolation is that the strain of Hepatitis C she suffers from responds well to Interferon.

Some of the women with Hepatitis C who had children before they knew about the virus are now facing the trauma of realising that they may have infected their own babies with Hepatitis C during pregnancy. One woman who is on Interferon for her own Hepatitis C has a 14 year old son who has an even more serious liver condition. "This is a source of tremendous anxiety for mothers - even more so than their own illness," says Dr Whelton. "We haven't got enough information on the virus to know whether or not these children will do well in the future."

Mary has four children, ranging from 15 to three, but none have tested positive for the virus. Neither has her husband: Hepatitis C is rarely transmitted to partners (although unprotected sexual intercourse should be avoided during menstruation). In order to minimise the risk of infection, Mary and the other women in her situation have been advised not to share toothbrushes or razors, and, if they cut themselves, to mop up the spilt blood with household bleach.

POSITIVE Action and the Department of Health have agreed on a Health Care Scheme for the women involved, which is yet to come on stream. It will mean that the women can have access to free counselling, visits to their GPs will be paid for, and they will have access to free home help services. There are already three free Hepatitis C clinics in operation, in Dublin. Cork and Galway. The Blood Transfusion Service Board pays travel expenses for those women who have to journey long distances to attend a clinic. The Board has also been operating an "out of pocket expenses scheme" which offers assistance with child care expenses. "There is no compensation for loss of income though," points out Jane O'Brien.

On the medical front, new developments are taking place all the time, including a prototype vaccine in California, which may be available in the next few years.