Thursday, May 24, 2007

Why you should sponsor...

Welcome to the Hydro Active 2007! Before I start blogging I am going to attempt to explain things to new(er) readers. Even though I suspect the majority of you know lots about me (in fact possibly more than I do in some cases) I am going to start from scratch…

So first of all, why the CF Trust?

Cystic Fibrosis is the UK’s most common, genetically inherited, life threatening disease. It affects around 7500 people in the UK. CF causes an overly thick and sticky mucus to be produced, which interferes with the digestive system and damages the lungs. Predominantly due to the latter affect, the average life expectancy 31 years old.

There’s the sciencey bit, now what about how it affects me. I was diagnosed with CF at birth. I had what I would consider a very normal childhood; I had the strict daily regime of inhalers, antibiotics, enzymes, vitamins, steroids, nebulisers and physiotherapy but as it was all I had ever known I never really thought much of it.

As I grew older, inevitably Cystic Fibrosis began to affect me more and more. Admissions to hospital for intravenous antibiotics increased to combat the ever more present chest infections, but socially I continued to thrive in my own over excited melodramatic way.

The teenage years approached. I wore lots of black, (I did honestly), fought with my parents, did everything a normal teenager is supposed to, but in the background there was always the underlying and continuous readmissions to hospital, which to me merely meant a readjustment of my social schedule, for example to invite all my friends up on the train to come and get a takeaway and squash into my hospital room to watch a film. As I got to know the nurses better, we got into little routines. Monday night became takeaway night, the dinner man got to know my favourite dishes and the number of salt and pepper sachets I would take off by heart, and hospital didn’t seem alien or scary, just a parallel segment of my life I would occasionally slip into, feeling slightly lost whenever I would have to return to the real world and discover everyone else had moved on 3 weeks without me.

A levels flew by, and University loomed. By sheer fluke (and extremely good luck) I selected Bristol, which had the best CF centre imaginable. I was cared for magnificently and the team worked overtime to guide me through life on my own, which created many more obstacles (such as the lack of a carer when unwell) but also so many possibilities and wonderful experiences that it was worth it a million times over. I threw myself into my studies, and even more fervently into my social life. Time passed, my lungs worsened. I commenced overnight oxygen and was presented with a formidable machine which concentrated oxygen out of the air and pumped it out through nasal cannulae which smelled strange and felt weird on my ears. I decided I would not be intimidated by this large and noisy machine and named it Claire, after a girl I once met who was incredibly loud and somewhat annoying.

During one fairly regular hospital admission, after several weeks of IVs which weren’t really denting my breathlessness, my consultant quietly asked if anyone had ever spoken to me about transplant. I muttered in a somewhat nonchalant manner that yes of course I had heard of them, that’s what really ill people have. It was only later that night my mind began to wander and it suddenly occurred to me that he may actually mean in reference to me.

Several months of ups and downs later, I was referred to Harefield for a transplant assessment. I was told that a transplant may bring me a better quality and extension on life. That 50% people post transplant reach 5 years. That without one I probably had about a year left. I joined the waiting list.

Nearly two years later, after several severe collapsed lungs, a few near misses which had my family rushed to my bedside, and an acute feeling all round that we were running out of time, I received that call that I had been hoping and waiting for.

I love my life. I am incredibly grateful for what I have got, what I have had, and what lies ahead of me. But that doesn’t change the fact that Cystic Fibrosis will mean that my life is considerably shortened. And for far too many of my friends, it has already claimed their lives.

Three young people die of CF every week. I now have a second chance, some precious years, which many never got. But what I want is for children born today not to face this difficult uncertain future. I want a cure. I want treatments to improve. I want support such as things like the Joseph Levy Memorial Fund which is part of the CF Trust and which saw me through my toughest financial times at University to go on supporting people with CF who are trying to live their lives.

This is why I am walking in aid of the CF Trust. Please give whatever you can.

Thank you.

1 comment:

Jenny said...

Hello Emily
It's little Jenny from choir! My grandma has just recovered froma double lung transplant aswell. she's 86! she has cystic fibrosis-i have been reading a bit more into it!
I have been praying for you, for a strong recovery! I am proud of you!
Jenny xxxx