LOOKING FORWARD?Billy O’Toole is focused on making the most of his life, in remembrance of his transplant donor.
‘I think of him everyday’
CF sufferer and double-lung recipient Billy O’Toole will always be grateful to the donor who saved his life
AS most people get older, they begin to dread birthdays; the fuss, the growing cluster of candles on a cake, the wrinkles. Billy O’Toole will turn 29 this May, and he is thankful for every year he gets older. Thankful to a person he never met, and who he knows very little about. Despite not knowing this person, Billy thanks him everyday for the gift of life.
Billy lives with Cystic Fibrosis. He remembers when his condition was first explained to him at the age of seven.
“I went into Castlebar Hospital with a sore tummy and the CF doctor Dr O’Neill explained it to me. I thought it was like asthma,” says the Scardaune native.
As he got older the condition progressed. At the age of 16, he weighed just five and a half stone, and later developed Crohn’s disease and CF-related diabetes.
At 18, Billy and his sister Martina travelled to Beaumont Hospital for a week of tests. Worryingly, Billy was coughing up blood. Another trip to Beaumont a year later showed that Billy’s lung function stood at just 25 percent. And it was decreasing at a rate of 3 percent per month.
At 20, a feeding tube was inserted into Billy’s stomach to help him to take in more food and to ensure he put on weight. It was at this appointment with a CF consultant in Dublin that he was faced with the harshest of realities.
“He said, ‘We have to talk about a transplant’. To me a transplant at the time meant ‘OK, I’m going to die’ – and that was the first question I asked him,” he explains.
He was told that without a double lung transplant, he would probably die within two years.
Faced with a ‘timeline’ as Billy calls it, he did what every rebellious young man would do – he focussed on living life to the full. He set about getting his own car, and joining friends in the summer of 2009 for a holiday in Chicago.
With just eight months left in his two-year prognosis, Billy’s mind came back to getting a transplant, but it was not until April 2010 that he was put on an active transplant list for the Freeman Hospital in Newcastle. Just shy of his 24th birthday, he had already beaten the odds and surpassed his projected timeline of living.
Before he was accepted onto a list, Billy had to be assessed both physically and mentally to see was he suitable for a transplant.
“They kind of assess you psychologically as well; they want to make sure you have the right attitude for it,” says Billy, who told doctors he wanted the chance to breathe again and live his life.
One night in early October 2010, while watching TV, Billy got a phone call from the transplant coordinator in the Mater Hospital informing him that there was a pair of lungs for him. Although there was a 5 percent chance that he would contract a tumour which the donor had at the time of their death, Billy wasted no time and said yes. Later that night, he and his sister Martina were on their way to Knock Airport, where a plane was waiting to bring them to Newcastle.
Billy was not the only one to get a call that night. Two other people on other transplant lists were called as a result of the donor’s passing.
Remembering the plane journey, Billy recalls that he and his sister didn’t speak. He wrote letters, texted friends and wrote down all the passwords to his various accounts.
“All I was thinking was, ‘Am I going to live or die, or be sent home?’. I had never thought I’d be called, and felt guilty because I thought there were people on the list who needed it more,” he says.
It was only when they reached the hospital that the seriousness of Billy’s health was realised. He was coughing up a lot of blood, and the doctors said that if the transplant did not go ahead, he would live no more than a week.
Thankfully, the surgery went well, and despite contracting swine flu in January 2011, which saw Billy fight for his life, he is reaping the rewards of his healthy lungs.
Asked if he ever thinks about his donor, Billy is candid: ‘Every day’.
“I didn’t so much at the time – I was thinking about myself. At the time, one family was grieving and my family were delighted. Now, I think of him everyday, when I’d be at work or if there’s problems, I think of that grieving family,” says Billy.
Now, Billy is focused on making the most of his life, in remembrance of his transplant donor. And he is more determined than ever, after being struck down with a brain haemorrhage in May last year – an event that was unrelated to his condition.
Speaking about the importance of people signing up to be donors, Billy simply says ‘I’m an organ donor’.
“For somebody who can’t see, somebody that needs a skin graft. What good is your body after you pass? The harsh reality is that somebody has to die for you to live, but I’d say to people awaiting transplants, never lose hope.”
Billy O’Toole blogs about living with CF at www.billycf.ie. Organ Donor Awareness Week began on Saturday last, and runs until April 4.