Battle for every breath: Chronic Obstructive Pulmonary Disease (COPD)
Chronic Obstructive Pulmonary Disease (COPD) is often dismissed as a poor man’s illness. But about 500,000 people suffer from it across the country and half of those don’t even know that they have it
COPD sufferer Michael McGloin says he wants the stigma to end Pic: Brian Farrell
By Sue Leonard
Monday November 17 2008
Without rehab, they become breathless; they panic and stay at home more, then they become isolated
COPD accounts for 20pc of deaths in Ireland. That’s twice the EU average, but people are slow to attend their doctor.
“Studies show that up to 50pc of people may not know they have it. They are never diagnosed, and are just living with it,” says Dr Aidan O’Brien, consultant respiratory physician at the Midlands Regional Hospital in Mullingar, Co Westmeath.
“They either think they are breathless because they are getting older, or because they smoke.”
That’s why World COPD Awareness Day, taking place this Wednesday, is so important.
“COPD is a disease that is not known about,” says Dr O’Brien. “It is seen as the poor man’s disease. And we need a national strategy to reverse that.”
COPD is a disease of the lungs in which the airways become narrowed. The condition is debilitating, progressive and irreversible and is primarily caused by smoking. It can be terrifying for sufferers struggling to breathe. But they don’t get a whole lot of sympathy. And that angers Sligo man Michael McGloin (58).
Anger
“When someone says they are breathless, and that they have COPD, they’re told, ‘Oh, that’s the smoking thing,’ and the conversation ends there. I want that stigma to end,” he says.
“All those years ago when we were smoking, nobody told us the dangers, and that we’d end up with this horrible illness, relying on oxygen.”
It angers him, too, that he was diagnosed so late. In October 1999, Michael was in St Vincent’s Hospital, waiting to be tested for a suspected stomach problem.
“I suffered a respiratory arrest,” he says. “My lungs simply stopped working. I went onto life support to be ventilated. I felt pretty well after a day or two.
“They investigated why it had happened and said I had COPD. I also had emphysema, chronic bronchitis, fibrosis scarring and bronchiectasis.
“I went into total shock. I remember saying, ‘Am I finished? Am I going to die?’ But no-one explained the illness to me. “They more or less walked away.”
There had, though, been a lot of warning signs over the years. Michael started smoking as a child.
“My father and grandfather gave me the odd cigarette to put me off smoking,” he says. “They thought it would make me ill, and stop me for life. But though I spluttered and coughed, it had the opposite effect.”
At 16, working as an auto electrician, Michael bought himself 10 cigarettes a day. As the years went by, he bought more and more, until he was on 40 a day. Mean-while he had married and had two daughters. “I was playing music at that time in smoky bars,” says Michael.
“In 1980, I woke one day and collapsed on the floor. When I came round, I could not breathe properly. I went to work, but had to go to hospital because of the pain. I had a collapsed lung.”
It happened again some months later, and Michael went to St Vincent’s Hospital to have part of the lung removed. “I was told to never, ever smoke again, but on the train home I was dying for one. I had one, and soon I was back on 12 a day.”
In 1990, Michael stopped playing his accordion with bands, and set himself up as Solton Sound. Hugely in demand, he’d gig all over the place.
“Life got crazy,” he says. “I’d get home from the day job at 6pm; grab some grub, and, if I was playing in Derry or Antrim, leave again at 7.30pm. I might not get home until 7am the next day, and it was into work at 9am. I didn’t seem to need sleep.”
Michael doesn’t drink. He’s a pioneer, but he was smoking 80 cigarettes a day. And for a while he got away with it. Then the infections began.
“I’d get a cough and a pain in my chest. The GP would give me steroids and antibiotics and in a few days I’d be fine.
“They told me to stop smoking; they’d say there was a danger of emphysema, but I’d forget about it until the next infection arrived.”
Michael regrets that now. He hasn’t been able to work or to play music since that 1999 diagnosis. His days are ruled by machines and drugs.
He’s on 24 hours a day oxygen; he uses a nebuliser and a home ventilator; and he’s on a cocktail of drugs. He’s on the list to be assessed for a lung transplant, having had another respiratory arrest.
Energy
But he stays positive. Discovering there was no information on the internet for Irish sufferers, Michael set up a website.
Then he helped set up a support group in Dublin, and another for sufferers in Sligo. Keeping all this going has become a job in itself.
“My aim is to have support groups in every county in Ireland,” he says.
“We need more outreach too, and we need better access to pulmonary rehabilitation. I did a course in Dun Laoghaire. You are re-taught how to breathe, how to exercise and how to conserve energy.
“Then you can build on that at home. I do my exercises every day.
“I want to motivate people. Often you meet someone and mention rehab. And they say, ‘I could not do that because I can’t breathe.’ They don’t realise it will help them to help themselves.”
Mary (name changed) can’t remember when she was diagnosed with COPD. But she thinks it was around 2000, when she was 46. “I blanked it out,” she says. “I didn’t tell anybody that I had it — that includes my husband.
“I’d smoked 20 a day; more at weekends. It was hard to give them up, even after the diagnosis. The more frightened I was, the more I wanted to smoke. But in the end, I managed it.”
Occasionally Mary would venture onto the internet, but what she read there on COPD terrified her.
She finally told her husband a year after the diagnosis, but it took rather longer to tell her children.
“I was afraid if I told them, it would stop them from doing things. They would not travel, or would be gone but would worry.
“I decided to tell them all last Christmas, but I didn’t get round to it.”
In February, they found out anyway, because Mary had a respiratory arrest. “I’d been out of work, sick, but I was back. I wasn’t feeling too bad, but that evening I didn’t feel great.
“My husband drove me to hospital, but I don’t remember arriving there. I woke up eight days later in intensive care.
“It was terrifying. I went through so many emotions. I lost all my confidence, but I’m feeling more positive again now. I’m driving again, and I hope some time to get back to work.
“Some days I’m OK but other days I’m breathless with no energy. I can’t plan anything. When people ask me out, I think, ‘Will I be OK to go next week?’
“I’ve accepted that I have it now, and I’ve joined a support group. I’ve found
it really helpful meeting other people with the same disease.”
Phil McWeeney is a respiratory nurse at Sligo General Hospital. She is hugely in favour of support groups for sufferers of COPD.
“In the past, people with COPD felt forgotten. Even now they can feel helpless, and feel there is nothing they can do for themselves.
Quality
“Support groups give patients a voice. They feel empowered, and they can share ideas and tips.
“Through rehab and support, they learn that they really can do a lot for themselves. They might be breathless, but they don’t have to be helpless.”
Dr O’Brien agrees. “There are four centres in the Midlands for pulmonary rehabilitation,” he says.
“We’d like to see more throughout Ireland. Through the multi-disciplinary programme, patients gain a better quality of life. They have less flare-ups, and fewer hospital admissions.
“Without rehab, they become breathless; they panic and stay at home more, then they become isolated. That can lead to depression. Then they take less exercise and deteriorate further. It’s a vicious circle. Getting out and taking exercise really does help.”
World COPD Day takes place this Wednesday, November 19. If you are concerned about the condition contact your GP
www.copdsupport.ie
– Sue Leonard