I was diagnosed with Cystic Fibrosis (CF) when I was 2 years old. CF is one of the UK's most common life-threatening inherited diseases. The disease affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus making it hard to breathe and digest food. There was no history of CF in our family and my parents knew absolutely nothing about it. It must have been so difficult for them to be thrust into the scary world of hospital appointments, survival statistics, nebulisers, physiotherapy and the million other aspects that make up having a daughter with CF.
During my childhood I remained fairly well. I kept up with everyone else my age and didn’t have much time off of school except for my 8 weekly clinic appointments. My mum had got me into a good routine with all my treatments right from the beginning and explained how important it was to do everything to keep myself well.
But by the time I reached my teenage years I had started to feel the bodily effects of my CF. I would find myself becoming breathless quite often but being fiercely private I always managed to hide my symptoms from my peers.
I gained 10 GCSE’s and moved on to Sixth Form College but by now I was really starting to struggle. I would spend my free periods at home, get lifts to and from college whenever possible and arrived early to class so that I could catch my breath before my friends showed up. Climbing the stairs at college was a killer and despite only living 10 minutes away the walk home would regularly see me gasping for breath and having to make several stops on the way. I would be speechless by the time I got in and barely able to breathe.
Straight after college I gained a job as a teaching assistant at my old primary school. I had volunteered there whenever I could and everyone knew about my CF and were very supportive. I loved working with children and as my position was only part time I had plenty of time to rest. By now I was back and forth to the hospital a lot, desperately trying different things to improve my breathing but all with little success. I was breathless most of the time and found going out, working etc really draining. Dreams I had of going to uni or drama school were impossible as I knew there was no way I could manage the physical exersion.
Things came to a head on December 15th 2006. I was having a particularly bad time health wise and had been forced to take some time off work, it was my first day back and I was determined not to let them down.
As I started walking I knew things weren’t right. I collapsed en route; it was as though my lungs had completely shut down. I was driven to hospital, placed on oxygen and given intravenous drugs to stabilise my condition. It was a very scary time for me as I had never felt so weak, and out of control before. I felt like I was trapped in a body that wasn’t mine, my lung function had crashed to 23% where it has remained ever since. I returned home after two weeks but my lung function did not improve. I instinctively knew that life wouldn’t return to normal, I began using oxygen 24/7 and a wheelchair to go out and about. Enough was enough, I knew transplant was what I was heading towards and it was my only chance at a better life. I approached my team about it and asked to get the assessment process underway as soon as possible.
I was placed on the active transplant list on the 9th July 2007 and have now been waiting over three years. I had a false alarm back in March '08 but unfortunately the lungs weren’t good enough to use (all organs and recipients undergo a strigent examination to check for damage and ensure the transplant is worth going ahead with). Since then I have had two more calls but again the donor lungs weren't viable.
Every aspect of my life is affected by my need for new lungs, even the smallest tasks such as getting dressed leave me exhausted. Emotionally, I can’t begin to describe the effect my situation has on both me and my family. There are days where I just feel overwhelmed by my situation. It is as though my life is on hold. My lung function has dropped to 19% and life feels very fragile. I never forget the fact that when my chance comes it is because someone else has lost their life. It's not something I take lightly in the slightest. The thought that my chance may never come is just heartbreaking. On the other hand being on the list gives me a huge sense of hope, a beacon of light, that things could get better, and that is the thing that pulls me through each day.
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