I’m Mike. I’m 36 years old and, as I write this, it has been 11 years and three months since a double lung transplant saved my life. I was born with cystic fibrosis (CF), a degenerative disease that killed 598 Britons between 2008 and 2012.
From an early age, I was acutely aware that the script of my future (or lack thereof) was already written. Prior to the transplant, I was given a terminal prognosis and had months to live. My latest hospital admission had kept me there for seven months. I was even planning my own funeral. In short, I was not living – simply existing.
But at 06:23 one morning, I awoke from the eight-hour transplant operation to realise that I had just become the recipient of a gift that very few receive, and it was a gift from somebody I would never meet.
Given a second chance at life, everything I knew about my treatment, health and my future had changed overnight. For starters, the time commitment of my treatment regime was cut to a third of what it used to be. I was no longer defined by the disease, and had some semblance of control over my future, as the Transplant Consultant said: “The healthier you keep yourself now, the brighter and potentially longer your future will be.”
Of course, treatment doesn’t stop after transplant. We’re told that it’s not a magic cure, some elements of CF do not go away, and you still have to be careful in looking after your health. But I left the hospital feeling the best I had ever felt, flushed with new determination to make the most of the opportunity that had landed in my lap.
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Determined or stubborn – it’s often a fine line between the two, and perhaps I’m a bit of both. Just 12 weeks after the transplant, I needed to get out of the house – I needed a job. I had a background in web development before I became too ill to work, so I had spent my time in hospital ‘skilling up’. I would buy programming books from Amazon and teach myself the skills that companies were hiring for at that time. I knew that this would pay itself back if (or when) I was well I enough to start interviewing for new positions. Thankfully that worked and soon enough I was offered my very first full-time paid position.
Many people grumble about the commute and the nine-to-five, but I was just delighted to be setting out on a new life that resembled normality. Getting back on my feet so quickly was the key to getting healthy as quickly as possible – but my doctors didn’t necessarily approve!
And they certainly didn’t approve of my next project: inspired to prove that CF could not hold me back, I went for my first jog within weeks of the transplant, and over the next five years I completed the British 10k, the Silverstone Half Marathon, and then the London Marathon in 2012. I also climbed Ben Nevis and Mt. Snowdon.
Last year I also achieved another huge personal milestone when taking up a new position at Amazon. That was an ambition I had thought about throughout my treatment and recovery, so to find myself at one of the world’s leading tech companies feels like a miracle.
These days, I want to turn my energies to helping others. I volunteer at Royal Brompton Hospital, consulting with doctors and nurses on CF care management, while fundraising for the Cystic Fibrosis Trust. Although I no longer consider myself disabled, I also work with my employer’s affinity group to support colleagues and their families.
I try to do everything as evenly balanced as possible. This is not only reflected in my job and home life, but I also try to be balanced in how I reflect on my experiences. Most people would not realise what I’ve gone through, but I’m always happy to talk about what I’ve been through, so I apply three ‘pillars’ when helping others or advocating for change.
Firstly, I raise awareness: if we have no voice, we have nothing. Educating people around Cystic Fibrosis and the importance of Organ Donation is incredibly important to me, which is why I raise money and I’m also honoured to be patron of the Simon Cowland Trust to help provide amenities and support for those who spend weeks in hospital.
Secondly, I pay it forward. While I am unable to be an organ donor myself, I try to give back to the NHS Trust that looked after me so brilliantly, where I talk to nurses, physiotherapists and doctors about the experience of growing up with CF and the emotional process behind transplant surgery. Without a first-hand account, healthcare professionals tend to learn about this from a textbook – so I’m happy to tell my story and answer their questions.
Lastly, I do everything I can to support others. I understand the pain points and frustrations of being disabled, so I’m happy to chat through my experiences and mentor others, whether that’s a formal relationship at work or just a quick chat.
I will never know or meet the person whose lungs I received, but I do know that they are the most significant and inspiring person in my life today. Without them, I wouldn’t be here to tell this story. We all get knocked down once in a while – but what counts is how quickly we get up and keep on going.
How It Feels is a weekly blogs series which aims to shine a light on people’s stories, covering subjects where voices are rarely heard. If you want to get involved, please email firstname.lastname@example.org