THE way my grandad died was so unusual that it still lingers in the
national psyche 37 years on. He was watching the infamous Battle Of Ecky
Thump episode of The Goodies [1970s BBC comedy show], laughing
uproariously, when he collapsed and died.
Doctors assumed he`d
had a massive heart attack and my grandma was comforted that his final
minutes were so happy, even sending a letter of thanks to The Goodies.
As far as we were concerned, the story ended there.
Decades
later, his strange death has come to light again this time because I
nearly died four months ago. I was sitting talking to my husband, Mick,
when I started to slur, then slumped over and began to wheeze strangely.
Mick rang the emergency services and was told to start CPR.
The paramedics arrived and discovered that my heart had stopped.
I
was rushed to hospital but I had been clinically dead for 55 minutes
and it wasn`t looking good. My heart was restarted in ER and my body
temperature lowered with ice packs to help recovery. The medical team
warned my family that my chances of afull recovery were slim. If I did
survive, I could be braindamaged.
Incredibly, when I was brought
round three days later, I was fine. I found it hard to grasp that I had
nearly died the whole incident seemed surreal. My family were more in
shock; they had seen me dead and had been badly frightened.
The
doctors wanted to understand why my heart should stop for no reason and
started to investigate. They were particularly interested in my family
history, and when they heard about my grandad`s death, they realised
that it was likely we both suffered from Long QT syndrome, an
abnormality in the heart`s electrical system that can cause it suddenly
to stop. It can go undetected for years or, as in my grandfather`s case,
never be identified; people with it can just drop dead and you never
know why.
After the diagnosis, I had an operation to fit an ICD
next to my heart to pace its beat and shock it if it should stop again.
Having this safety net is a huge comfort it hasn`t needed to restart my
heart since, but I have felt itregulate the pace, which was weird: an
odd, fluttery feeling in my chest.
The next step was to get to
the bottom of why it happened. With Long QT, a variety of triggers can
cause the heart to stop beating. One is feeling intense emotion for my
grandad, it seems the prolonged laughing fit was his trigger. Exercise
and a sudden startle such as jumping into cold water can also be factors
and when my parents heard this, their blood ran cold I swam
competitively for my county during my teens, a sport that ticks two
trigger boxes. I feel lucky that I had a normal, lively childhood; it
would have been miserable to have had to curtail my energy.
I
won`t know my exact trigger until the results of the genetic test come
back in six months, and possibly not even then, which is slightly
alarming because of the wide range of things it could be. I`m supposed
to avoid swimming alone, rollercoasters and scuba diving.
I`m not
afraid to watch a scary movie or have a good cry, though, because the
ICD will look after me, and although my life has had toregulate the
pace, which was weird: an odd, fluttery feeling in my chest.
The
next step was to get to the bottom of why it happened. With Long QT, a
variety of triggers can cause the heart to stop beating. One is feeling
intense emotion for my grandad, it seems the prolonged laughing fit was
his trigger. Exercise and a sudden startle such as jumping into cold
water can also be factors and when my parents heard this, their blood
ran cold I swam competitively for my county during my teens, a sport
that ticks two trigger boxes. I feel lucky that I had a normal, lively
childhood; it would have been miserable to have had to curtail my
energy.
I won`t know my exact trigger until the results of the
genetic test come back in six months, and possibly not even then, which
is slightly alarming because of the wide range of things it could be.
I`m supposed to avoid swimming alone, rollercoasters and scuba diving.
I`m
not afraid to watch a scary movie or have a good cry, though, because
the ICD will look after me, and although my life has had tochange, it
also has to go on.
What concerns me more is that, because mine is
an inherited condition, my daughters Ellie, aged three, and Amelie,
nearly one, may also be affected. They have both had ECGs to monitor
their hearts and although Amelie wriggled too much for a conclusive
result, doctors think that Ellie may have the syndrome. She has been put
on beta-blockers, which will hopefully protect her. I want her to be
able to have a normal childhood, so we don`t wrap her in cotton wool,
but I watch her like a hawk when she plays on her trampoline or enters a
race for her nursery`s sports day.
It`s hard not to worry when a
balloon pops at a children`s party, though could that be Ellie`s
trigger? Having Long QT in the family is scary, but in a bittersweet way
I see what happened to my grandad as the start of protecting future
generations. I find it very sad that he should die without the correct
diagnosis, but also so grateful that his death helped piece together the
mystery of our family`s condition.• The Guardian, London
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