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Kirstie’s Story

I was born with Cystic Fibrosis a genetic condition that affects all the main organs especially the lungs. I had been in and out of hospital all my life, but it was two years before my transplant that became the hardest, with a rapid decline in my lung function and mobility. Until then I had managed to finish school, attend college and run my own business, despite the constant struggle. However with my decline, I lost my business, my car and finally my independence.

In March of 2011 I attended Harefield hospital for lung transplant assessment where they ran vigorous tests to decide whether I was a suitable candidate for transplant. I remember my doctor coming into the room and saying I was just on the cusp of needing a transplant; I looked at him and said ‘I need this now’ – I was being left behind in my own life. He agreed to list me, however I knew this didn’t guarantee a transplant and 50% of people die waiting for new lungs.

Six days after my appointment, my health nosedived and I was admitted to hospital. I didn’t leave until I had home healthcare, twenty-four/seven oxygen and a stair lift.

My carers did the simplest of tasks for me, as I was unable to do them. I was only twenty-one and completely reliant on others to look after me. I felt robbed; things had changed forever.

By May I couldn’t even walk four metres to the bathroom without struggling to breath and gasping for air. I was admitted back to hospital and put on a non-invasive ventilator, which would force air into my lungs, as I was so weak at this point.

The CF consultant I had known for many years came into my room. I was on the non-invasive ventilator and struggling for every breath, with anguish in his eyes he told me: ‘Kirstie, if you continue to decline at this rate you won’t live another six months’. It was devastating at the time; I would not survive another three months without a transplant.

As this was all going on I was planning my wedding to the man I loved, Stuart. Things had been constantly changing for us since we had got engaged: we had gone from getting married in Cyprus, to possibly not even making it down the aisle in England – when we got engaged we certainly didn’t realise I was dying.

Pushing ahead, I managed to keep my eye on one thing, my wedding. I came out of high dependency in June, after going into respiratory arrest, to marry Stu. They asked me to get married in the chapel and not to walk down the aisle. I refused – I was going to have my wedding my way, even if it was the very last thing I would do. I walked all the way down the aisle to my fiancé and it was the most amazing day of my life. However, all the while Stuart had a DNR – Do Not Resuscitate – in his back pocket: at that point being kept alive would have ruled out transplant and it would have been cruel to keep me in pain.

Two weeks later, I was rushed back to hospital, struggling to breath and turning blue. It was clear my life was coming to an end. I was given a choice by the same doctor who told me I only had six month to live; I could stay in Exeter and spend the last few days of my life with my family in comfort, or I could take a risk and be airlifted to Harefield to be kept alive with invasive and horrendous treatment in the hope that a pair of lungs would become available in time. I knew that I had to take a chance, not for me, but for my mum and for my husband: I was airlifted to Harefield

On the third day I was ventilated and put on ECMO, a device that works like a heart and lung machine by re-oxygenating your blood and taking out the carbon dioxide. I was in and out of consciousness, unable to come off the ventilator as planned, and suffering form severe pain, hallucinations, anxiety and deep fear.

Spending five days on ECMO and ventilation and with two false alarms, I was in the last few hours of my life. The ITU consultant was on her way to perform life saving treatment when a set of lungs became available.

My life was saved.

I woke up not knowing I had had a transplant, I was still ventilated and I had to start the huge process of recovery. I had been literally as ill as you could get which made my recovery mentally and physically a lot harder. I had so much muscle waste I literally couldn’t even open an envelope or lift my head of the pillow. I suffered from depression after such a traumatic experience and had to under go intensive rehab

Four and a half weeks later I was up and walking and my husband and I snuck off so I could try and tackle walking upstairs earlier then planned – this was the sign that I would be going home. Two years later I am back running my business as a fitness instructor. I have held a charity ball and revisited my journey from Exeter to Harefield but this time on a bike. I cycled the 180mile trip for four charities, with my medical team from Exeter, my husband, friends and family supporting all there to support me.

Not a day goes by that I don’t think of my donor. Without them, many more people would have died that day. I wish I hadn’t had to suffer the things I did and I know that if more people choose to sign up it wouldn’t had to have come to such extreme measures. I’m only grateful that I have had the experience so that now I am able to help others through transplantation, ECMO and ventilation.

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