At 1.15am on October 17, 2011, I woke to the sound of my phone ringing.
Half-asleep, I could just about make out the words ‘No Caller ID’ on the screen and I remember thinking: ‘Who on earth would be ringing at this hour? I’m not going to answer that!’
But as my finger hovered over the ‘decline’ button, I paused.
There was only one reason I would be getting a phone call at this time and it’d be because someone was about to change my life.
‘We have some new lungs for you,’ said the nurse when I finally answered. ‘Do you want them?’
I was three weeks old when I was diagnosed with cystic fibrosis (CF) – an inherited condition that causes sticky mucus to build up in the lungs and digestive system – so, you could say, my life was complicated from the start.
My condition can cause lung infections and problems with digesting food, so my mum, Sam, became a full-time carer as well as a parent.
She had to do physio on me to help clear mucus from my lungs, as well make sure I stuck to my strict regimen of medications, all so I avoided getting an infection.
Despite her efforts though, I often still needed intravenous antibiotics and was generally severely underweight for my age.
To most, this probably seems like a lot for a young child to go through. But for me, it was all I’d ever known, so it was normal – I never questioned anything.
But I knew I would never have a normal life.
Someone with CF like me was generally expected to live until they were in their 30s, and without a transplant, I knew I wouldn’t even make that.
I am happy to say that now, thanks to advancements in treatments, those diagnosed with CF today are expected to live until at least 56 years old.
I was determined to enjoy what I could of life..
I never took holidays to Spain with my mum and stepdad, Patrick, for granted – with family holidays and time together they gave me the best life they could.
But then, when I was 16, my health deteriorated.
I’d been sitting at lunch at school one afternoon when I coughed and felt a tightness in my chest. After that, each cough left me breathless.
Somehow, I finished the day and even walked a mile home. Yet when I arrived and saw my prom dress had been delivered, I just wasn’t interested. Instead, I took myself to bed and fell asleep.
Concerned that something wasn’t right, my mum took me to hospital the next day where an X-ray showed my lung had collapsed.
It meant air was building up between my lung and the chest wall leaving me struggling to breathe.
I was rushed to the Intensive Care Unit and then taken by ambulance to King’s College Hospital, London. Doctors worked to insert a chest drain to remove the trapped air and inflate my lung, which was struggling to fill with oxygen.
I was set to finally be discharged after three weeks. However, on that day, I went to the loo at 6am, coughed and felt pain again, but I was desperate to get out, so I said nothing.
By the time I got home, I was in so much agony that we had no choice but to call an ambulance to take me straight back to hospital.
At that point it became clear to the doctors that I would likely need a transplant sometime in the future.
I refused to believe it would ever happen. I couldn’t even bring myself to say the word – I called it ‘the T-word’. It was terrifying and I found it hard to accept I had reached that point yet.
Things continued to get harder after that. I needed oxygen at home, we moved to an adapted bungalow, with a lift to get upstairs and I struggled to go to school. Instead, Mum often took me and my little sister Erryn window shopping, with Erryn sitting on my lap in my wheelchair.
Then, the day before Christmas Eve 2010, I got a call to say I’d been added to the transplant list. All I could do now was wait for the call.
That Christmas wasn’t particularly magical as a result – we couldn’t go away on holiday because I’d be moved down the transplant list if we did, and my parents couldn’t have a drink over the entire break as, if the call came in, we had to be able to get to the hospital in three hours.
But Christmas, the New Year, Valentine’s Day and the like all came and went without so much as a peep.
My quality of life continued to deteriorate all that time too.
I slept with the phone under my pillow, so I woke as soon as my phone rang that Monday morning in October.
It was a strange feeling as I looked around, wondering if I’d be home again.
‘Mum, I’ve had the call,’ I whispered into the pitch black nothingness that was her bedroom. And within seconds she was sitting bolt upright in bed, a panicked look across her face.
The car journey there and the hours that followed were all a blur and at 2pm, I was wheeled down to surgery with Mum by my side. And then I slept.
When I woke up five hours later, I had tubes all over me and felt incredibly sore.
But, that first breath I took off the ventilator felt amazing.
Later, I learned the surgeon had told my mum that my old lungs were so damaged that I’d have been unlikely to reach Christmas that year.
I knew I wasn’t cured, but I felt better than ever.
After that it was all about recovering. I spent three weeks on the High Dependency Unit and was then discharged and although I had regular check ups and took anti-rejection medication, I grew stronger and stronger.
Then, I was free to live my life almost entirely on my own terms, apart from daily medication.
Find out how to become a donor
Almost 60,000 lives have been saved since the NHS Organ Donation Register was created in 1994 and there are currently more than 7,500 people waiting to receive an organ. For more info, visit Organ donation and transplantation.
Of the 100,000 who received an organ donation since the NHS Organ Donation Register was created in 1994, almost 60,000 are still alive today, due to their organ transplant.
I eventually took my A-Levels, I went to university and then got a job working in television production before doing a Master’s in social work. I also still tried to live life to the fullest by going on cruises, camping and to Disneyland.
And when I was 38, I met my partner Sam, and we moved in together last year.
My life now is so different from what it was pre-transplant.
I’m living life to the fullest and I owe all that to my donor, who I know was a 36-year-old woman who had signed up to the organ donor register.
Without organ donation, the last 13 years of my life wouldn’t have happened. Without her, I would have likely died at the age of 17.
That’s why, every year on the anniversary of my transplant, I light a candle and whenever I’m doing something – be that celebrating Christmas, doing a skydive or even just going to work – I think of her.
She gave me the best gift anyone could, she gave me a second chance at life. That’s a debt I’ll never be able to repay, but I do my best to show my gratitude every single day.
As told to Alex Meyer
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