She was 32 and not expecting to reach her mid-30s: cystic fibrosis had destroyed her lungs. Then, early one morning, a phone call came that would change her life
It was at 5.46am on Friday 30 August last year that I got a call that would transform my life. I’d woken before dawn, already out of breath as my exhausted lungs struggled to cope even when asleep. Ten minutes later my phone rang. As soon as I saw it was a “blocked” call I knew why it was ringing.
I was born with cystic fibrosis (CF), an incurable genetic, degenerative illness. It had slowly overwhelmed my lungs until, at the age of 32, I needed a double lung transplant if I was to survive into my mid-30s. The call that morning was from my transplant co-ordinator at Harefield hospital, Middlesex, asking me to get there as soon as possible as they thought they had suitable lungs for me.
My body was shaking when I put the phone down, which was at odds with how calm I felt as I got ready to leave. I even started making tea for my parents and my husband, Chris. My dad drove us through London during morning rush-hour traffic. I’d imagined that when the time came we’d travel in stunned silence, but we chatted away as if it was a normal family outing. Yet as I stared out of the window I felt distant from our fellow commuters. They were wrapped up in their daily routines while we were preparing for the possibility that our lives could change for ever.
Once we’d arrived at hospital we had to wait over five hours before we knew if I was to have a transplant that day. Sometimes donated organs are in too poor a condition for the doctors to risk performing the operation. I knew the chances of getting a transplant on my first call were slim – a friend received nine “false alarms” over four years before finally getting her new lungs.
But even after I’d signed the consent form and been told “it’s a go” by my co-ordinator, I didn’t truly believe the operation was going ahead until I was collected for theatre. My family came with me as far as the anaesthetist’s room, and as I was wheeled through the doors I managed to wipe away my tears and wave goodbye. The last thing I said to them was: “Happy smile.”
A nurse held my hand while they put me to sleep and I recited over and over how love was the most important thing in life, and told her she must tell my family I’d said that. I found out much later that there was a 10% chance I wouldn’t have made it off the operating table.
My family had to wait from 2pm until 2am to see me again as the operation took much longer than the expected eight hours. My old lungs were so scarred that it took ages to remove them. That explanation has haunted me ever since. When I was first placed on the transplant list I was told to expect a wait of over two years. That was one of the darkest days of my life. I instinctively knew I wouldn’t last that long. But even I was surprised by how bad my lungs really were. The call had come when I really needed it.
We were warned in advance about the number of machines I’d be hooked up to, but it was still startling. The ventilator tubing down my throat was soon removed but I was left with two lines in my neck (each with multiple tubes attached for fluids, antibiotics and insulin), heart and oxygen monitors, a blood pressure cuff, a catheter for urine, oxygen tubing under my nose, a tube in my right nostril for liquid food, an IV line in my wrist to monitor my blood oxygen levels, and four chest drains spread under my ribcage, each running into a large bucket. A bank of monitors towered over my bed.
My memories of my first week after transplant are very fragmented but I was told I spent most of it being violently sick and miserable with pain. It wasn’t until the second week that I was able to stay awake for more than an hour or two. Yet to prevent my new lungs from collapsing I was on an exercise bike within days of my operation. I was soon able to walk up three flights of stairs – something I’d not been able to do for almost half a decade.
I was finally discharged 27 days after my operation, and six and a half months after I’d first been listed for a transplant. My recovery will be slow as my body is very weak and needs a lot of physical rehabilitation, but to walk out of the hospital wheeling my own suitcase and without needing oxygen or a wheelchair, or to stop for a hacking cough, was incredible.
A transplant is such a miraculous treatment that I still haven’t got over the shock that I’ve been through it – when I was born in 1981, the first UK heart and lung transplant was still two years away.
The sudden switch from preparing to die to fighting for recovery left me in deep turmoil – in the early days I often said how much I missed my old lungs. In my worst moments I questioned whether I had been right to agree to a transplant. I’ll always be on immunosuppressant tablets and could experience infection or rejection at any time. This unpredictability weighs heavily on me as some people live for 25 years after they receive new lungs, while others barely survive another 12 months.
But ultimately I know I’m incredibly lucky that I got this opportunity to live once more. While I was on the transplant list, so many young people with CF whom I’d got to know through social media died waiting for their chance. Sam Yates died at the age of 28 after waiting three years for the call that never came. Emma Jane Kingston died at 20. Brian Goldspink died at 36. There were many more. It was devastating to witness the grief of their families and to know that my loved ones could one day experience those feelings.
As I get stronger, the full horror of what my family were living through before the transplant has hit home. It became routine to normalise every decline in my health, until it seemed acceptable to spend most days in bed on oxygen, too exhausted to do much but breathe. It is only just sinking in that my donor really did save my life. My gratitude is immeasurable.
It’s never far from my thoughts that inside me someone else’s lungs are breathing life into me. I thought I’d find that concept invasive but it’s as if I’ve a new friend from the grave filling my life with immeasurable wonder. I was overwhelmed with grief when I discovered my donor was a young woman and I feel a formidable responsibility towards her and her family to live my life the best way I can. It frustrates me now when others don’t see the value of each other.
As the year unravels ahead of me, I catch myself grinning with delight at the future that is now, once more, mine to grasp. Yes, it’s full of new uncertainties around my life expectancy but I now have the ability to go for a walk with my dog; dance in my kitchen; and, in the fullness of time, climb Helvellyn mountain in the Lake District. That is something I’ve dreamed of doing ever since Chris told me how much he’d love to sit at the top with me one day and be silenced by the beauty around us. Thanks to my donor, I live again.
To sign up to become an organ donor visit: organdonation.nhs.uk