Touching Lives - June 2004
My story: turning point
Pioneering plastic surgery techniques helped maintain her quality of life after surgeons had originally predicted that Olivia’s arms and legs would have to be amputated above the elbows and knees to stop the gangrene that had spread into them.
The Edinburgh based lawyer has been telling her dramatic story in a bid to raise awareness of the devastating illness and also to raise many thousands of pounds to fund more medical research and help others struck down by meningococcal disease.
“Advances in plastic surgery gave me the chance I needed,” said Olivia, 38, who has recently been back in hospital for more operations. “Because of that, the importance of medical research has been made very clear to me, not just in fields such as plastic surgery but also in preventative research to find a vaccine to stop people getting meningococcal septicaemia in the first place.”
Olivia’s story is frightening because of the speed with which she became seriously ill. Feeling unwell at her office, she went home suspecting flu but during the following day deteriorated to the point that she was struggling to sit up or walk. She had a raging thirst, swollen neck glands and her feet and hands were ice cold and had started to itch.
A doctor who visited her at home didn’t suggest septicaemia but Olivia suspected glandular fever and insisted on a blood test, though the doctor recommended she take aspirin and rest. When small purple marks started to appear on her hands and feet, Olivia called an ambulance herself. By the time she got to hospital, her condition was becoming acute.
Olivia told Touching Lives, “Even though I felt so ill my mind was functioning perfectly all the way through, and commonsense kept telling me to get help and get an ambulance. ^I suspected something was very wrong^, but when I got to hospital and a huge number of people gathered round, I realised I was seriously ill. I heard them discussing things like Toxic Shock syndrome, but I never for a moment thought I might die.”
Olivia was taken to intensive care and her partner Robin was warned that she would probably not survive. Subsequently, Olivia slipped into a coma and her family faced an agonising decision. Olivia had patches of gangrene on her limbs and they were told that her arms and legs would have to be amputated above the elbow and knee joints. They decided that if there was no other option, they would let the disease run its course and let her slip away.
But another option did present itself. A plastic surgeon reviewed Olivia’s x-rays and told the family he may well be able to save more of Olivia’s arms and legs than previously thought. Crucially, if he succeeded, it might mean the amputations could be below the joints and it was the turning point her family had hoped for.
She said, “The skill of the plastic surgeon made the difference. Potentially, my quality of life was going to be so much greater by keeping my joints. ^My knees are now a miracle of plastic surgery.^ The surgeon kept my calf muscles and folded them up over my kneecaps, so they still have a blood supply. I had skin grafted from other parts of my body.
“I also have tiny scars all over my body where there were little pockets of gangrene that just fell away. There’s no doubt that modern plastic surgery techniques made all the difference and gave me a fighting chance.”
Olivia spent eight months in hospital, but once home picked up life more or less where she had left off. She drives, she and Robin are living in the same house without any major adaptations, and she has been abroad.
She said, “I’m pretty self-sufficient as far as my own personal care goes. The bioengineering team at my NHS hospital have been fantastic in making gadgets for me. I generally sketch out my idea and explain how I would use it and they make it.
“Everything takes a little longer now. I’m currently practising putting a hair clip in using my stumps, but it will take a bit more time to master the technique. The things I can’t do are household jobs like ironing.
“I have electric hands, but I don’t really use them and find I can do more just with my stumps. When I need some extra assistance I prefer body powered hooks. They give me the ability to hold things with one side and give me extra reach for jobs such as loading the washing machine.
“I do have some cosmetic hands too — complete with beautifully French polished nails — but never wear them because it’s like encasing your arms in iron gloves. I take them with me to show people when I give talks. I have prosthetic legs that I wear every day.”
Since her illness, Olivia has been driven by a desire to make more people aware of the dangers of meningococcal septicaemia and meningitis in general. She has thrown herself into a round of interviews and events and has visited schools to make young people more aware of the symptoms.
She said, “When meningococcal septicaemia strikes, you don’t have very long before it becomes extremely serious. If I had known the warning signs I could have done something about it much more quickly. I had just never seen the campaigns about the disease and didn’t know what the symptoms were.
“I don’t want other people to be in that situation and that’s why I have been telling my story. ^What happened to me makes people stop and listen^ and the way I look also gets people’s attention. That’s important if I’m to get the message across.”
Woman of influence
Due to her incredible fundraising and awareness raising-work, Olivia was invited to Buckingham Palace to meet the Queen at a Women of Influence event, and is a nominee in the 2004 Scotswoman of the Year award. She has become a role model for other disabled people, but says the disability ‘badge’ is one that took some time to accept.
“I clearly remember being in hospital when ^it occurred to me that I was disabled.^ It wasn’t an immediate thought and I found it a shock because I didn’t really identify with that label. Now of course I realise I’m just the same person I was before, but I look a bit different, and that message is really important. Not having hands and feet doesn’t mean I’m not a whole person and every other person with a disabled ‘badge’ is a whole person as well.
“‘Disabled’ is such a negative word. I have realised that it’s important to focus on what disabled people can do despite the fact that they find some things difficult. Never assume that a disabled person can’t contribute.”
What Olivia is really hoping is that her efforts to raise money and improve awareness of meningitis will speed up the launch of a vaccine for the group B strain of meningococcal disease.
She said, “It really excites me that researchers are getting close to a vaccine for group B meningococcal disease. It could be as little as ten years away and then, like smallpox, this terrible disease can be consigned to history. But it all takes money, and that’s why it’s essential for people to help fund medical research. With an effective vaccine other people will not have to go through an experience like mine.”
Look for the warning signs
Meningitis and septicaemia have devastating consequences and can be fatal to both children and adults. Know the symptoms. You could save a life — maybe your own. Visit our website at www.action.org.uk/our_research for a list of warning signs.
Your donations make a difference: Action Medical Research has funded projects, both complete and current, on meningitis, meningococcal septicaemia, phantom limb pain and artificial limb comfort in the last three years. These represent a total funding commitment of £325,000.