Wednesday 28 January 2015

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

Health Stephen O'Brien who has had a double lung transplant.
Picture By David Conachy.  20/2/2014
Health Stephen O'Brien who has had a double lung transplant. Picture By David Conachy. 20/2/2014

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.

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.

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