In 2004 I
joined P&O Cruises and became a member of Youth Crew looking after
children, a fantastic opportunity but a job which is known for its long
working hours and solid 5/6 month contracts. During the Summer 2005 I
had a series of blackouts or what were also thought to have been panic
attacks onboard the ship. My colleagues, along with myself, put this
down to working and playing too hard, a poor diet and the tough summer
holiday season taking its toll. After a couple of days rest, I seemed to
be better.
It wasn't
until Boxing Day 2005 that another collapse occurred, leading to a
massive seizure. The ship's medical staff referred me to a hospital at
the ship's next port (Nassau in the Bahamas) where, after 48 hours, I
was flown back home to London. Luckily for me, I had some good friends
on board who managed to pack some personal belongings together for me to
take home.
After the New
Year I was sent as an inpatient to St Thomas' Hospital, London, where
specialists examined my situation. I will always remember that week, it
was my 23rd birthday! Neurologists initially believed that I had
epilepsy, however, testing for this came back negative.
I was
obviously very happy and very ready to go home, but the neurologist
advised me that a cardiologist wanted a quick word with me. On his
arrival I was told to get back into bed and the cardiologist explained
that something had been detected on a routine ECG. He couldn't let me go
home and needed to keep a close eye on me for a further 72 hours as "you
could walk out of the front doors of the hospital and drop dead."
I was so shocked, I was speechless!
He explained
I had something called Long QT Syndrome which was the cause of all my
blackouts and fainting. I was put on a Beta Blocker and told to report
any further episodes. After a further two much more serious
collapses, the decision was made to give me an ICD which was implanted
in the right side of my chest in June 2006. Due to all of this I was no
longer allowed to continue my career at sea. Naturally I was devastated.
The surgery
for the implant seemed to go well with nothing more than the usual
discomfort. However, as time went by I began to experience an increasing
amount of pain in my implant site. Stabbing pains would shoot through my
chest like bolts of lightning, making me double over with the pain.
After months trying unsuccessfully to resolve the pain, the decision was
made to re-locate the ICD to the left side of my chest. This was done in
January 2008.
The
relocation went well but my recovery period seemed to last forever and
the pain from the procedure was immense!! I really wasn't myself and was
constantly feeling run down, tired, lethargic and if going out and about
would need constant breaks to rest. My legs would seem to collapse
underneath me and coupled with this my whole chest was throbbing in pain
from the past procedures. I now have severe Keloid scarring and my GP
has also diagnosed me with M.E.
My GP and
cardiologists have concluded that my body is unable to withstand
invasive surgery of any kind. Tissues and nerves that have been
interrupted from past procedures are unable to heal and thus, this is
the cause of my discomfort. The pain in my implant site again
became so severe that in August 2008 I had my ICD completely removed to
try to reduce pain. However, I now am anxious that as I have Long QT I
am at risk of sudden death, and feel that I should really have an ICD
for that "just in case" moment!
With regards
to the Keloid scarring, plastic surgeons have decided to operate and
perform radiotherapy which, given time, could greatly improve my
situation. I am now 25 and feel as though I am living the life of an
elderly person!
It seems that
my Long QT has arrived with more than just a little baggage and as a
result my lifestyle has hugely altered.
