My double lung transplant and the stranger who gave me my life back
Born with cystic fibrosis, 19-year-old Kate Hennessy was hours from death when a double lung transplant saved her. A year on, she describes her gratitude to the saviour she will never meet
Tuesday 24 September 2013
After a lifetime of coping with cystic fibrosis, in August last year it looked as though my life was over. I was in Harefield Hospital, awaiting a donated pair of lungs to replace my diseased ones. I had become used to constant infections and constant treatments and a life interrupted by long stays in hospital. But now I was barely conscious as my condition declined and a machine took over the job of oxygenating my blood. Then the machine was no longer sufficient and my family had to face it: I had only hours to live. That I am here to tell this story is down to a stranger I never knew and will never meet.
I was diagnosed with cystic fibrosis when I was four and a half months old. At that point, I weighed less than when I was born, and I'd already had a number of bouts of pneumonia. Nobody was really sure what was wrong with me and it took a while to figure out. One day, my dad gave me a kiss on the forehead and noticed I tasted very salty. That's one of the biggest clues for cystic fibrosis: really salty sweat.
Until my teenage years, I was mostly OK. I was an active child and did professional trampolining and ballet. I even went to the Reading Festival when I was 13 and have tried to go every year since. I was on a lot of tablets and had various antibiotics but most of the time I could lead a reasonably normal life and didn't have to spend too much time in hospital. Then, when I was 14, I got an infection and just didn't really recover. From then on, I was on intravenous antibiotics regularly and I just got worse and worse bouts of infections that put me in hospital for longer and longer. I was just deteriorating.
From then on, I missed a lot of school. I tried to keep up with my work but one year I had a 39 per cent attendance record. I still managed to get my GCSEs, including two As. I attended sixth form even less and it got to the point where I couldn't carry on.
It was a really stressful time for everyone. I was doing all of the treatments but I never got better enough to have a life. One thing I did manage to do was go to the Reading Festival in 2011. But even that was in a wheelchair. We took a trailer and everyone gave me piggybacks everywhere. Being ill was hard, but I tried to focus on the good things in my life.
I was put on the transplant list in September 2011 because of my poor lungs: they were functioning at about 29 per cent. I had to use a stairlift at home because I was unable to make it up the stairs. I would stay in hospital because I couldn't face going home. It was very scary. My parents have always been very, very honest with me and I think that's definitely something that helped me to cope. I always knew that it was serious and what could happen.
Being on the waiting list for a lung transplant is scary. I know people who have waited for two years and someone who waited two days; it's just what becomes available. There's so much to take into consideration with a match-up: blood type, tissue type, size, quality.
By March of last year, I had to go into hospital and go on oxygen. Over a very quick period of time, I went from not using an awful lot to using loads. Then that wasn't enough. I wasn't able to breathe independently and had to get a BPAP breathing-support machine, which is a mask that fits over your nose and mouth and helps to push air in to inflate your lungs. My stay in hospital was now pretty much continuous.
I was transferred to Harefield Hospital in August, where they do heart and lung transplants, and that was when I was told that I didn't have many days left. The doctors explained that I would have to go on an ECMO machine, which basically would take out my blood, oxygenate it, and put it back. They also told me that I could live on it for only a week.
I don't remember an awful lot about that time. I was in and out of consciousness. My friends would come and visit me but I would just fall asleep a lot of the time. They thought it would be the last time they were going to see me. The machine that was oxygenating my blood then started not to work sufficiently and that was it. I had hours to live.
The doctors later told me that if the chance of a transplant had arrived just eight hours later, I wouldn't be here now. I awoke to lots of people in my room, telling me they had a lung, and I was to go into theatre. Strangely, one of the main things I remember was that they had to cut off all the Reading Festival wristbands that I'd kept on and I was really upset about it.
I was unconscious for a good few days after the operation and when they told me that I'd had the transplant I couldn't believe it. I had some problems after that because my body wasn't accepting the lungs the way it should have and I ended up having to have a tracheostomy, which was horrible. I wasn't able to speak, eat or drink for a few weeks. I was so weak I couldn't lift my hand up or press the "on" button of the television remote. It was so gruesome and painful, just a living nightmare.
But eventually, bit by bit, I got better. And they let me go home for a couple of days in October. All my friends were there and my parents bought me the biggest bouquet of flowers. I was still in and out of hospital but I managed to go on holiday to France, where I went on a three-hour zip-wire trail, which was amazing.
I've always appreciated getting these lungs, but the past few months I've been able to live my life and really enjoy having it. I appreciate everything that's been given to me – it's such an incredible gift, and I'm just getting the full benefit of it now. It's completely transformed my life; it saved my life. I missed a good five years so I feel like I have a lot to catch up on.
I've been thinking of writing a letter to my donor's family because I don't know anything about them. It's quite a scary concept. You don't know who this person is or whether they had a family, or had kids, or were about to get married. But they did something so incredible and profound that I feel like I should know them: what they did, what they enjoyed doing.
Organ donation can change someone's life. One in three cystic fibrosis patients will die waiting, but it doesn't need to be that way. It's so important to sign up to organ donation, and to tell your loved ones if you have. It's the best gift you can give. My parents didn't have to lose their daughter, my brother didn't have to watch his sister be buried. My friends didn't have to say goodbye. None of that happened because of that one incredible person who did something amazing.
Interview by Gillian Orr
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