SERIOUS HEALTH problems are difficult enough to cope with, but when patients have never heard of their condition before and can find little information about it, the situation is even more frustrating.
That's what happened to Michael McGloin, who following many years of dealing with chronic lung problems, was diagnosed with COPD in 2000. He had never heard of COPD (Chronic Obstructive Pulmonary Disease) before this and the only country he could obtain information from was America.
Michael used the lack of knowledge in Ireland to start up the first support group here in Sligo, Benbulben COPD Support Group, which has since spread throughout Ireland, raising awareness and helping fellow sufferers understand more about the debilitating condition.
"I set up Benbulben COPD in 2006, founding the first one in Ireland. After I was diagnosed with it, I went through a tough time trying to learn more about what exactly it meant," Michael recalled..
Michael has since founded groups in Mayo, Galway, Offaly and Dublin. "There are in the region of 400,000 people in Ireland with COPD. People didn't understand it - I certainly didn't. When I was diagnosed with it in Dublin, the consultant never explained what it was, so it was up to me to find out.
"I went on the internet. There was nothing related to Ireland. Everything was coming from America," he added.
He explains that COPD is a disease involving the deterioration of the lungs. "It mostly occurs from smoking. The figures are about 80% of cases. In some cases, people can be born with a genetic form of COPD, which comes when there is a deficiency in a gene, Alpha 1, that is missing," Michael revealed.
Michael attributes his smoking as the primary factor in his diagnosis. He had part of a lung removed in the 1980s after it collapsed four times, but still he found it difficult to give up tobacco.
'I started smoking when I was 12. At one stage I was on 80 a day,' he admitted.
In 1999, Michael suffered a serious respiratory arrest. Following this, a number of tests were carried out and he was diagnosed with COPD. He also learned that he had chronic bronchitis and emphysema. "Then reality sank in, along with fear, anger and depression. I wanted my life back the way it was, but it was clear that this disease wasn't going to go away and I needed to learn to cope with it," he said.
Michael has to be connected to oxygen 24 hours a day. He has a machine in his house in Cartron, and when he needs to go out, he uses a portable machine. "It's very easy to get housebound, to get isolated. Many people with this condition do as they don't like going out in public. Say, this afternoon, I was in a restaurant for lunch and I could see a few children nudging their parents and looking over at me, hooked to the machine. But I don't mind, you get used to it," Michael added.
Before the respiratory arrest, Michael suffered severely with frequent chest infections, on average one a month, and a pulmonary function test found that his lung capacity had chronic damage. "I had to give up my job afterward and my music, which was very sad too. I played the accordion and it was a heavy machine so I wasn't able to hold it," he said.
The Benbulben COPD group meets in the Southern Hotel once every two months. "It's a good way for people to get out and meet those in similar situations, who understand what they are going through, some people, like myself at the beginning, feel that they are the only person going through this, it's good to share stories and chat."
Michael says that he is busy with his support group work and finds that it is a good reason to keep active, setting up meetings, patients forums and he is working on an extensive website related to Benbulben COPD. "There was a five year study done into the condition in Galway and we're waiting on the reaction to that."
He adds that people suffering with lung conditions have to be aware of the environment too - certain smells can trigger a setback such as perfumes, aftershaves, car fumes, household cleaners etc., which can close the airways.
Michael would like to see an increase in GPs capable of doing spirometry tests which can check patients' lung functions and see if they have any underlying lung problems. "I'm trying to promote GPs doing this in their surgery as opposed to sending people to hospital, it's quite a simple procedure, a computer immediately reads the results," he said.
Michael and Benbulben COPD are also involved in the 'Love your Lungs' campaign which is set to take place on June 27th in Sligo General Hospital. Throughout this information and awareness day, there will be a technician from the pulmonary unit there along with respiratory nurses testing people's lung capacity. "Rehab is also important for patients once they are diagnosed with COPD. It generally is a twelveweek course involving occupational therapists, dieticians, pharmacists etc, to better prepare you to deal with the condition. I wanted to set up Benbulben COPD so that in the future, people diagnosed with this condition can get information easily," he maintained.
Michael is currently on the waiting list for a lung transplant. "I was previously called for a transplant but I was told that it was not suitable for me; that can be the case sometimes. They have to try and match the donor as close as possible, taking height into consideration for example.
"I'm still a huge music fan, maybe if I get the gift of a lung one day I may play again."
Keep an eye out for Benbulben COPD in the coming weeks as they are hosting fundraisers for equipment for the pulmonary rehab unit in Sligo General Hospital. www.copdsupport.ie