My sister, Laura and I are own as the
"Bionic Babes" in our home town of Southampton, because we both
have tiny defibrillators implanted in our chests, designed to constantly
monitor our heartbeat, and shock us back to life if it ever stops.
We
both have a rare condition that means our hearts can stop if we're
startled or suffer from stress.
I'm
only 17, but have already "died" five times and had to be
revived.
Our dad died when I was
eight, and doctors could only tell Mum that it was "sudden
death". He was a fit, healthy man, and his death was totally
unexpected.
A few years later Mum saw
a documentary about an inherited heart condition that can cause sudden death
with no advance warning symptoms.
Diagnosed
She
had to fight to have Laura and I tested, as every doctor she spoke to said
it was unnecessary. Eventually one hospital agreed and the tests
revealed we both had a rare illness called Long QT Syndrome.
Basically,
it involves the electrics in your body "misfiring" and
disrupting the signals that control the heartbeat. Your heart can
miss a beat or stop. There are no warning signals but, potentially,
you can just drop dead on the spot.
At
the time we were diagnosed, I was only 10 and Laura was six, so we didn't
understand just how serious it was but from that day on normal life
changed.
Because an attack can be
brought on but a shock, over-excitement or exercise – anything that
quickens the heart – we had to be very careful. I couldn't ride my
bike, do PE at school, watch scary films or even have an alarm
clock. Waking up in the morning was the most dangerous time because
as your heart speeds up naturally, the shock of an alarm clock could have
proved fatal.
Worst of all there had
to be someone with me everywhere I went, in case I suddenly collapsed –
even to the loo! I hated it and felt trapped. Even with all
the precautions, I still managed to die at least five times.
Once
I was punched accidentally at school and collapsed. Another time my
heart stopped when, against the rules, I went on a fairground ride, and it
must have been too much for me. Mum was furious when she found out,
but it was so frustrating not being able to do all the things every other
young girl could do. Even going to a disco was forbidden. Any
kind of excitement could trigger my heart to stop.
I've
come round in school more than once, with shocked looking teachers and
sobbing schoolmates looking down at me. Luckily my heart always
restarted, but there was always the risk that one day it wouldn't.
My
sister's condition seems to be less serious than mine. She's
suffered from chest pains, but never collapsed.
Treatment
Then
in 2002, doctors suggested that we both have tiny defibrillators implanted
in our chests. They're mini versions of the machines you see on
hospital drams, which are used to shock people back to life.
The
ones Laura and I have are no bigger than a cigarette lighter, and
constantly monitor our hearts for any "flutter". If the
heart stops, they automatically shock it back to life.
We
both had the operation on the same day but the worst part was when we were
taken back down to theatre a few days later so doctors could stop our
hearts to make sure the machines worked – thankful they did!
I've
been told that when the machine does go off, it's like being kicked in the
chest by a horse. Luckily it's never had to jump into action for
real.
I'm just glad it's there as it
gives me reassurance, but I still have to be careful. I keep my
mobile phone away from the implant and even getting too close to stereo
speakers could switch it off.
Counselling
Laura
and I have also joined CRY – Cardiac Risk in the Young, a support group
for young people with cardiac problems. They helped us come to terms
with our illness and, now, we're taking a counselling course to be able to
help others like us.
We're supposed
to have a rare condition but around eight young people a week die of
"sudden death syndrome".
We're
also trying to raise funds for CRY, and let more people know about our
illness – thanks to our Mum's much loved VW bus which has been painted
pink and touring the country collecting celebrity autographs. We
just collected Ester Rantzan and the Cheeky Girls and their signatures on
heart shaped stickers are now on the bus.
Mum
was remarried earlier this month and in October she and our step dad will
be having an unusual honeymoon – taking the bus from Land's End to John o'
Groats.
I've decided life is for
living, so I'm going to live it to the full.
