I grew up, learning more and more about the affects of my condition and the many possible outcomes I may experience later in life, but I never truly considered that some of the worst ones, may actually happen. I was determined to enjoy the “now”. It was a few years into uni that my health took a turn for the worst, and over a period of 2 years my health dramatically declined. I had to give up playing hockey, which I loved and leave my degree course before I had finished it. I became reliant on oxygen 24/7, I carried round an oxygen tank whenever I went out, but this didn’t deter me from trying to live as normally as possible. I still saw my friends. And it’s not often that you see a person on oxygen in a nightclub. Even if I was too weak to dance, I could still experience life!
As I deteriorated, I lost a lot of weight, and eventually had to be fed through a tube in my stomach to help me gain the necessary calories to survive. The name of the tube was called a button, so I decided to call mine Jenson.
Having realised my own lungs had deteriorated beyond the help of antibiotics and extra oxygen, I was put down for needing a double lung transplant. Needing a transplant was something that I knew could happen at some point, but I never thought I would need one at the age of 24. A transplant would never be a cure for me, as I still have Cystic Fibrosis now, but I don’t carry it in my lungs.
There is a national shortage of donated organs. This means that you have to wait for an organ that you need so desperately and so many people unfortunately do not get the chance. I was one of the lucky ones and was only on the list for 4 months before I got my call saying there was a matching donor. Many people ask if I was scared or nervous before I went down for surgery, but the answer is that I was excited. I was about to have the chance at getting a new lease of life. I knew that if I didn’t get the transplant, I wouldn’t be here today. But I also knew that I only had the chance to survive, because someone else had died.
On 29th September 2012, I had the life-saving surgery and received two new lungs from my donor. It changed my life completely. My mother once told me that I was like a donkey with a carrot, as long as I had something to aim for, I would keep on going. After transplant the aims started off as being very small, like getting out of bed and walking unaided. I’ve always liked a challenge and I no longer had an excuse. I could breathe, and I could run and I wanted to push against my odds to see what I could now achieve.
I wanted to raise awareness of CF and organ donation and run in memory of my donor. So, along with some friends, I signed up to run the Brighton marathon in 2014. Training was hard, and I got a chest infection a couple of months before the day so my training took a bit of a dive, but I stuck to it, and after a very slow and painful 6 hours and 55 minutes, I crossed over the finish line and raised a massive £13,000.
After the marathon I wanted a new “carrot” - one of my surgeons was organising a trip to Ecuador to mountain climb. After months of hoping to be selected I made the cut and along with 12 other transplantees, a surgeon, a nurse and camera crew, we reached an Andean summit of 5350.
After Ecuador I celebrated my three year Lungiversary by completing a 13 mile cross-country obstacle course! For me, these challenges seem to be physical ones, perhaps because I have been through the process of losing control of myself physically. Challenges vary for everyone, whether they be little or big, or physical, or academic, everyone is different, as are the reason behind the challenge. In 2016 I competed in the British Transplant Games, eventing in tennis, a 3k run, 800m run and 100m relay, managing a silver in tennis and in the 800m.
From this, I was selected to represent Great Britain in the World Transplant Games taking place in Spain this month. For now, that is my “carrot” – to do the best that I can, for me and for my donor.
Amanda now lives in Brighton and is a designer and maker of contemporary
To sign up for organ donation, go to www. organdonation.nhs.uk
About World Transplant Games. http://wtgmalaga2017.com/en/