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
"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
"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
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
"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
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
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
"My aim is to have support groups in
every county in
"We need more outreach too, and we
need better access to pulmonary rehabilitation. I did a course in
"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
"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
"We'd like to see more throughout
"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