Paul Le Bourne was the husband of Penelope and the father of Bronwyn. He was infected with hepatitis C during a blood transfusion after a motorcycle accident in 1981. He subsequently had to have his leg amputated and wear a prosthetic leg which didn’t deter him from activities such as hiking, swimming and camping.
There were several correspondences between Paul’s GP and the hospital about Paul’s hepatitis C infection two years before the family were told.
The family found out about Paul’s diagnosis accidentally while Paul was being tested to see if he could have a lung transplant for emphysema. In 2001, Paul underwent two courses of Interferon and Ribavirin treatment which were unsuccessful. Paul’s physical and mental health deteriorated to the point that he could no longer recognise his family.
Paul’s condition had a devastating effect on Bronwyn’s health and education. He sadly died in 2013 aged 63.
Michelle, a mother of three, spoke about her late husband Vincent who was infected with hepatitis C after a motorcycle accident in 1983. He received a blood transfusion. In 2008-2009 Vincent became unwell. Upon medical assessment, the doctors concluded that Vincent had cirrhosis of the liver assumed that the condition was due to excessive alcohol consumption.
Vincent was later involved in a car accident which he was not expected to survive. Whilst he was in critical condition, Michelle was informed then that Vincent had hepatitis C and that this was the likely cause of his cirrhosis. Vincent survived the accident but Michelle described the months after the hepatitis C diagnosis as being a blur as she was in shock.
Unfortunately it was not possible to Vincent to have treatment for his hepatitis C as his condition was so advanced by the time he was informed. Vincent’s condition deteriorated rapidly and he was referred to palliative care. Vincent sadly died in March 2010.
Peter spoke about his son Mark who was infected with Variant Creutzfeldt-Jakob disease (vCJD) after receiving a blood transfusion during an operation to have a stoma removed.
During his master’s studies and his early working life Mark became fatigued and found it hard to concentrate. He was initially diagnosed with Chronic Fatigue Syndrome. Mark’s sister had noted that his personality had changed as he had become withdrawn and quiet.
An investigative journalist then discovered that Mark’s blood donor had died in 2000 of vCJD. Mark and his parents were told in 2006 that Mark had vCJD by a Neurologist who informed them that Mark only had months to live. Peter felt that if Mark had been told earlier that he would have been able live the short time he had left to the full.
The National Transfusion Service admitted to Peter that they hadn’t told him he was infected as they were afraid that he would commit suicide. Mark participated in a clinical trial of a drug which he admits served a purpose in helping him feel better but that was never going to save him. Mark sadly passed away in May 2006.