‘My liver transplant allowed me to finally swap surviving for living and see places that I never dreamed I would’
Cystic Fibrosis sufferer Aoife Breen says the generosity of a stranger transformed her fate and allowed her the opportunity to swim with sharks in the Caribbean, see Uluru at sunset and climb the Great Wall of China.
It was a dreary January Wednesday morning in 2013. I was sitting in a room nestled away from the public eye with a small group of others, of whom five others and I were the invited guests. We were an unlikely bunch: men, women; young, old; some with a family member, or a friend.
Within about ten minutes of starting her presentation, the woman at the top of the room told us that one of us wasn’t going to make it. Well, she put up a slide that said 18 per cent of people in need of a liver transplant wouldn’t get one in time. I remember the hairs standing up on the back of my neck. I swallowed and glanced around. There were six of us at the compulsory transplant education day who were newly listed for a liver transplant: statistically, one of us wasn’t going to make it.
Having been diagnosed with cystic fibrosis-associated liver disease at the age of six, the slow development of liver disease meant that I didn’t really notice the symptoms: they were all part of 'my normal', slowly worsening over the course of 20 years. It wasn’t until the summer of 2012 that I realised how serious my condition was.
In May of that year, I awoke in the middle of the night and threw up about half a litre of blood; six weeks later, it was a litre of blood; and two days after that, it was almost my full blood supply over the course of a few hours. The veins in my oesophagus had ruptured because of very high pressure as a result of a dysfunctional liver. A leading transplant consultant stood at the end of my hospital bed one day, and voiced his opinion: “It’s time to start considering transplant”. My future vaporised with those words: my liver was slowly dying, and without the generosity of a stranger, I would die, too.
Thus began the hardest battle of my life: recovery after a summer of constant illness –not to be 'better', but to be 'better enough' to qualify for, and survive until, transplant. The awful irony of life on the transplant list is that, due to the shortage of organ donors, you have to be sick enough to be on the list, but well enough to survive the wait. The lack of organs means that medical teams have to make excruciating decisions on who makes it to the list, and who doesn’t.
Early on a bright September Tuesday morning, eleven months after that information day, the phone rang.
“Aoife, we have a liver for you.”
I sat at the edge of my bed, in a trance, as the woman on the phone explained that I needed to come to the hospital within an hour. It was supposed to be an ordinary Tuesday; I was supposed to go to work and reply to emails. And now—now, I was on my way to everything, and to the rest of my life.
The short ten-minute taxi ride to the hospital was like no other. I watched the world as it appeared in slow motion; as people prepared for their ordinary days: sipping coffees at bus stops; unloading goods from trucks; walking briskly with headphones. Never in my whole life have I felt such a longing for ordinariness than I had that morning. The banality of the everyday seemed like the greatest prize of all. And in that taxi, I knew that, soon, all of that could be mine, too, because, now, above all else, I had hope.
That all became a reality soon after waking up. I discovered I had energy that I never had before. The months that followed exposed other improvements, including a significantly better lung function, despite still plagued by CF complications. I became aware that my liver transplant had dramatically transformed me in ways I could never have contemplated previously. I had gone on the list with the hope and expectation to survive, but what I received was so much more.
- Read more: 'We were lucky to have been given those extra 13 years'- Widow of CF sufferer Ger Foley on the 'Brightside' of organ donation
So I decided to make the most of it. In January 2015, just two years after that education day, I left my job for a life of travel. I swapped hospital wards for hostel dorms; ambulances for airplanes, and surviving for living. The months that followed were a frenzied global adventure, where my biggest problem was deciding where to go next. I went by train from London to Beijing, travelled through parts of the US and Central America, backpacked across Japan, New Zealand, Australia, and even took on parts of southern Africa.
Of course, I still had cystic fibrosis, which meant I had to carry approximately a lot of medication and equipment, as well as returning home for check-ups, but I was thriving and felt unstoppable. I stuck to my regime of treatment -- but I was in places as far-flung as the Mongolian steppe, the Australian Outback and the Namib desert.
My donor was never far from my thoughts throughout my travels. I never lost sight of the fact that because of their decision to donate, I was able to swim with sharks in the Caribbean, see Uluru at sunset, climb the Great Wall of China, and make it to the top of Table Mountain. But more importantly, they gave me the stability that I yearned for: my life was my own again, and the banality of the ordinary was mine to enjoy once more.
In their darkest moment, my donor’s family knew that something awful could become something positive; they knew that in death, there could be new life; and their despair could give hope.
I will never be able to put in words how thankful I am for the generosity of a stranger: it is an unspeakable gratitude. If you had a chance to give someone everything, after you weren't even alive any more, would you? This week is Organ Donation Awareness Week: it’s time to think and talk with your family about just that.
Organ Donor Awareness Week 2016, which is organised by the Irish Kidney Association, will take place from 2nd – 9th April
Organ Donor Cards can also be obtained by phoning the Irish Kidney Association LoCall 1890 543639 orFreetext the word DONOR to 50050. Visit website www.ika.ie