Flying high in Connacht after a serious heart diagnosis

At 36, Marc Stanley was forced to radically alter his lifestyle – and mindset – after he discovered he had a condition called dilated cardio myopathy

If there is one man in the west of Ireland who does not harbour the slightest fear of flying, it is Marc Stanley. If anything, a passion for light aircraft may have saved his life.

“That, and the support of my wife and family,” Stanley says of his experience over the past few years.

The 43-year-old, who lives in Co Roscommon, laughs a little when he thinks of how he was known as “the man who fixed trains that stopped”. In his time off, flying, angling and sailing were his pursuits.

“You become what you do, and my job as a breakdown fitter with Iarnród Éireann defined me,” he says. “That all changed when I was travelling early one morning to Cork to look at a train in September 2011, and I had to pull in at Athlone, Co Westmeath, as the pain in my side was so bad.”

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He remembers it as a searing pain that “came out of nowhere”. When he stopped at Limerick depot , a foreman remarked on his appearance. He eventually made it home from Cork that evening and parked his van at the back of his house. The van did not move again until a replacement was found for him at work.

At 36 years of age, he was diagnosed with dilated cardio myopathy which eventually leads to heart failure.

“No one has 100 per cent heart efficiency, and a young child might have 85 per cent,” he explains. “Most people have an efficiency of 60-65 per cent, and upwards of 55 per cent is accepted as normal.”

“If efficiency is between 40 and 50 per cent, it is worrying, and if you are below 20 per cent you need a new heart,” he says. “When they got me to hospital in Sligo, my wife Geraldine was told that my heart efficiency was at 11 per cent and there was nothing they could do.”

Heart efficiency

Geraldine Kavanagh was determined to get a second opinion, and secured an appointment two weeks later in the Mater Private Hospital in Dublin. There, her husband was put on medication, and subsequently fitted with an implantable cardioverter-defibrillator ( ICD).

“My heart efficiency rose to 18 per cent within several months, but it took a long, long time,” he says. “I was put on a low sodium diet and had to exercise and cut out alcohol,” he says. “Giving up the drink was a bit of a relief as there is too much pressure on people to drink in this country.

“I had no family history of this, but looking back I remembered having a very bad flu in December 2008, which had floored me for about six weeks,” he says. “I think the problems began then, and my heart efficiency was so low that my heart began throwing out blood clots.”

His employer’s health and safety policy restricted what he could do when fitted with an ICD. “Basically, I couldn’t go near a rail line, and so I was encouraged to take voluntary redundancy,” he says.

Iarnród Éireann had a scheme for counselling, which he signed up to and was glad of, he says. He had become depressed and fixated on a fear of death. He remembers feeling both numb, and also feeling that life was “surreal”.

At the time, he and Geraldine had one child, but they were encouraged to have a second, and did – his son and daughter are nine and four years old respectively. His condition meant that he became tired easily, and realised that was an additional challenge for his wife when they had a young family.

“I was doing a lot of walking to get my heart strength up, but then I would be exhausted,” he says. “I loved playing music but gigs tend to be in pubs and don’t start till late, so that put an end to that.”

When we see warning signs on the road we pay attention . . . but when it's our own body, sometimes we can ignore the signs

He had motorbikes which he sold, but he also had a aircraft in his garage. “I could not bring myself to sell that, and the idea of not flying was unbearable,” he says. So he moved jurisdiction to secure his license, and now flies microlight aircraft from Frenchpark in Co Roscommon.

"I skilled up and became an airworthiness inspector, and I also teach ground school theory," he says. He has been taking an online course for the past four years in marine surveying from the Institute of Marine Surveyors in Portsmouth, England.

Support meetings

"I have had to adapt my lifestyle, and change career, and I have never met anyone of my age who had this condition," he says. He has attended support group meetings run by the Irish Heart Foundation, and says his advice to anyone recently diagnosed with heart failure is to recognise that "you are still the same person, and you can explain this to the people in your life".

Maintaining a positive outlook is easier said than done, but it helps a lot, he says, as heart disease is both a mental and physical condition.

It is estimated that 90,000 people live with the heart disease in Ireland, according to Health Service Executive (HSE) statistics, and the Irish Heart Foundation has initiated a new campaign from March 6th to raise awareness.

The Pay Attention to the Signs campaign says that swollen ankles, fatigue and shortness of breath are “warning signs that should never be ignored”.

Irish Heart Foundation medical director Dr Angie Brown notes that "when we see warning signs on the road we pay attention . . . but, when it's our own body, sometimes we can ignore the signs".

“Heart failure can often go unnoticed because its symptoms come on gradually. It’s easy to attribute tiredness to a busy lifestyle, and breathlessness to being out of shape,” she says. “These are signs we need to watch out for.

Lorna Siggins

Lorna Siggins

Lorna Siggins is the former western and marine correspondent of The Irish Times