Back in 1996, I was in my final year at university, enjoying my freedom and studying hard (ish). But that perfect student
life changed very quickly, and over the course of just a few days I began to struggle to breathe. Walking became tiring…
too tiring, and I found it hard to stand for any length of time or to lay flat.
One morning, after climbing just a few stairs on the way to a lecture, I had to stop and rest because it felt like my
lungs had shrunk and there was no space for air. Was I unfit? Did I need to do more exercise or perhaps eat more sensibly?
I was rather partial to custard slices and knew that consuming a twin-pack probably wasn't the best thing for my overall
health! Or, was it a cold or a chest infection? I didn't for one second think that it was anything serious. It didn't
cross my mind that this was something life threatening.
My first visit to the Doctor led to an early diagnosis of stress, but within 24 hours I was sent to hospital with suspected
pneumonia. After collapsing, the diagnosis changed again, and I began treatment for chronic heart failure because of
a condition called Dilated Cardiomyopathy.
It's quite something to find yourself on a ward with a bunch of eighty-year olds, each keen to give pep talks about how
I'd be home in no time. But that wasn't to be my story. My hands and feet began to swell, my vision failed, and whilst
I did leave the ward before the rest of the ladies, it was to move to the high dependency Coronary Care Unit with round
the clock nursing care.
There then followed a tough couple of weeks. It is my memories of those days and many similar experiences in the months
that followed which cement my unwavering appreciation of the NHS with Nurses that stayed late or came in early to wash
my hair or to accompany me to theatre and Doctors that 'popped' in on their days off and stayed far too late in a bid
to get a young girl back on her feet.
When it became clear that options were limited, I was transferred to The Freeman Hospital in Newcastle where I was quickly
put on the transplant list. Battling heart failure and with time running out, the decision was made to put me on life
support, and with a machine breathing for me, I was given 48 hours before my organs would start shutting down or infection
would get the better of me.
And so the waiting game began.
Undoubtedly, this bit was harder on my family as I had the luxury of sedation with only intermittent moments of lucidity
in which I could make a brief written comment or the odd request for important things (like a nice glass of red wine
' which incidentally I did get, but that's another story). My family had no such relief, and they waited hour after
hour for the unthinkable. It's not a situation I'd wish on anybody.
72 hours later, the Ward Sister appeared at the window of my room and gave me a thumbs up sign.
In 1996 Cardiomyopathy was an unwelcome stranger. No one in my family had heard of it before, so the cause of my illness
was blamed on a virus, an unlucky and terrifying experience, but one which, everyone seemed confident, wouldn't be repeated.
Lightning doesn't strike twice, and with this reassurance in my pocket, I carried on with life, graduating from university,
travelling, working, meeting my better half and ultimately starting a family.
Ten years later, my family's life was turned upside down when lightning struck again only this time it hit my brother,
Darren who at the age of 29 was diagnosed with Dilated Cardiomyopathy.
I was pregnant with my first child at the time, and Cardiomyopathy was no longer a stranger. In all likelihood, it was
an inherited condition.
Darren battled the condition for over six months, but by the Spring, he too was transferred to Freeman Hospital and put
on the transplant list. It was harder for him. He was over 6ft tall and built like a rugby player. Finding a donor heart
for a man of his stature was a big ask and the wait felt like forever. To buy time, Darren was fitted with a Berlin
heart, a fairly new, unfamiliar yet ingenious piece of technology which kept him with us a couple of extra months.
Eventually, a donor heart was found for him, and as a family we allowed ourselves to believe that everything would be
fine. After all, I was a shining example of just how successful a heart transplant could be, but the surgery was complicated.
Removing this new device proved to be tricky, and it was time-consuming. Every minute spent removing the Berlin Heart
was one more minute when the donor heart wasn't beating. When it came to the transplant, the donor heart wouldn't beat
independently, and despite everyone's best efforts, Darren didn't survive the surgery.
We lost him on 15th June 2006. His first nephew was born a week later. A further five months down the road, our Mum was
also diagnosed with the same condition. It felt like our family was the punch bag and Cardiomyopathy was the glove that
kept dealing us the left hooks.
But it won't be that way forever.
The faulty gene that causes the type of cardiomyopathy that my family have experienced has now been identified. This
is a huge leap forward. The next step is identifying what causes that faulty gene to trigger… because it doesn't
From there, we work out how to prevent it.
In 1996 the prognosis for someone receiving a heart transplant wasn't great, and yet that all important number now stands
at 8000 days. That's almost 22 bonus years, and for this I need to thank the incredible team at the Institute of Transplantation
for the on-going after care they continue to provide. However, I also recognise behind that team is a mass of knowledge
and information that has been acquired through years and years of research, by people who had to ask difficult, complex
questions. Questions that ultimately led to answers being found.
So, with that in mind, I have very, VERY high hopes for the next 5, 10, 20 years' worth of research.
This year, The Snowflake Ball is supporting The British Heart Foundation and Cardiomyopathy UK, two charities whose work
will help us move closer towards a future where Cardiomyopathy doesn't destroy families and strike fear into the hearts
of anyone receiving it as a diagnosis. Two charities that are asking the questions which will ultimately lead to the
answers we need.