How a double lung transplant gave me a second chance
Stephen O'Brien tried to live normally, despite having cystic fibrosis. As the years passed, coping with the disease became a daily struggle, says Joy Orpen, but a double lung transplant has transformed his quality of life
Published 23/03/2014 | 02:30
Not long ago, Stephen O'Brien, 31, thought his days were frighteningly numbered. Though his doctors struggled to find ways to help him, he was in really bad shape. It was a dire situation. But then the almost miraculous happened when he was given a double lung transplant.
Stephen – a bright, articulate and sensitive young man – grew up in Cork. At birth, he was diagnosed with cystic fibrosis (CF), which is a chronic genetic condition.
CF causes sticky mucus to build up in different parts of the body. Repeated infections can lead to irreparable lung damage, while mucus may block the release of enzymes in the digestive tract, playing havoc with nutrition.
For the first few years of his life, Stephen, the middle of three children, was in and out of hospital like a bouncing ball.
Then things settled down for the next decade or so. Of course, he got the odd chest infection, and his parents had to watch his diet carefully, but, generally, he led a fairly normal life.
"I was well able to play soccer and other sports," Stephen says. "I also loved fly fishing and music."
In 2002, Stephen left the safety of the family home in Cork, and moved to Waterford to study horticulture.
"I was at college; I used to go socialising, and so on. Sure, I had to do physio every day, I had to use a nebuliser, take medication and watch my diet, but that was just the way it was. But, in my 20s, the infections started coming a lot more quickly," he says. "Instead of one IV [intravenous] antibiotic, I now needed five or six a year."
Stephen kept quiet about his condition when he was with his peers.
"It's not something you talk about – not when you're trying your best to fit in and not be different," he says.
However, in 2007, Stephen realised he couldn't continue working outdoors, so he got a job as a customer service supervisor at TK Maxx.
Two years later, he told his bosses about his condition. "They were very supportive," Stephen says. "I was working in the Waterford branch, so they transferred me to the one in Cork so I could be near Cork University Hospital [CUH], where I attended the CF unit, and to be near my family."
As time went on, the infections became even more frequent and Stephen was now on the strongest medicines possible.
Eventually, Stephen was told he needed to start taking oxygen.
"At first, oxygen gives you a boost, but the body gets used to it," he explains. "I began having it eight hours a day. Then I was bringing a mobile unit into the office and, eventually, I was using oxygen almost all day. It helped having to concentrate on work rather than trying to breathe."
Finally, Stephen was told that he needed a double lung transplant – he was devastated.
Donal Ahern, an old school friend who also had CF, had been on the transplant waiting list. "I saw what he went through," Stephen says, his voice wavering. And although Donal was on the list for three and a half years, he lost his valiant battle for life in 2010. He was just 28 years old.
Tears come to Stephen's eyes when he thinks of his dear friend. Nonetheless, he went on the transplant waiting list in April 2011 and, over the next few months, was rushed to Dublin's Mater Hospital three times when lungs became available. But, each time, the organs proved to be a poor match for Stephen and he was sent home.
"In the winter of 2011, I was put on a BiPAP [Bilevel Positive Airway Pressure] machine, which, basically, breathes for you. I felt that if I didn't get a transplant soon, I was going to die," he says.
Then, a few months later, Stephen got yet another call to come to the Mater – he didn't think the transplant would go ahead as he had a bad chest infection.
But, nonetheless, an ambulance took him to Dublin and, after the usual tests, he was told that they were preparing to operate. It was a heart-stopping moment for him.
"I was really grateful I was getting this opportunity. I knew I might not come through it, but, if I was going to go down, I wanted to go down fighting," he says.
He says the operation took about 12 hours. "I've heard it was difficult. They discovered that my lungs were so badly damaged I only had a few weeks left. I think they were shocked," he says.
Stephen was in a medically-induced coma for a couple of days, and then, gradually, he began to recover.
"I was really very, very weak after the operation. It felt totally abnormal to breathe on my own, but it was amazing, too."
He was able to leave hospital three weeks later, and returned to work after five months.
He still has problems with the overproduction of mucus in other parts of his body, but his lungs no longer trouble him.
Last year, Stephen did two things he thought he would never do – he competed in the 180km Ring of Kerry cycle race, and he visited relatives in Toronto, Canada.
He also plans to compete in the 2014 European Heart and Lung Transplant Games in Lithuania.
Stephen has nothing but praise for all those who have supported him over the years, and these include his bosses at TK Maxx (where he is now an assistant manager), and his immediate family, who he says had to use "tough love" to get him through.
He has nothing but praise for all the members of the CF team at CUH, and for the staff, led by Professor Jim Egan, at the Mater Hospital, who got him through his life-changing transplant.
But his most heartfelt thanks goes to those behind the selfless donation of the lungs, which, undoubtedly, saved his life. When he talks about these unknown heroes, his voice breaks and tears come to his eyes. "I've never done an interview before, but, if this gives someone else hope, then it's worth it.
"And, if people see the difference that organ donation has made in my life, it might encourage them to carry an organ donor card," concludes Stephen, who is now the picture of good health.
- Organ Donor Awareness Week, which is organised by the Irish Kidney Association (members of the Irish Donor Network), takes place from next Saturday, March 29 to April 5. To obtain an organ donor card: Freetext the word DONOR to 50050; visit www.ika.ie; or download a smartphone app by searching for Organ Donor Ecard. You can also indicate your wish to be an organ donor on your driver's licence
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