What it’s like living with a progressive lung condition in NI
As the NI Chest Heart and Stroke charity launches its Breathing Better campaign to improve the quality of life for those who have a progressive lung condition, Laurence White talks to three people who have benefited from the programme
‘People I’ve met at NICHS help me remain positive’
‘Being fitter means I can keep up with my 10-yearold daughter’
Mark Huddleson (56) is married to Pauline and they have two children. They live in Carryduff. Mark says:
For me a diagnosis of COPD (Chronic Obstructive Pulmonary Disease) in 2011, followed by one of heart failure in 2013, was an enormous blow.
I can probably trace the former back to the first 22 years of my working life when I was a barman. I was a smoker and also subjected to passive smoking.
But in later years I prided myself on my physical abilities, and my job was quite taxing, but these diagnoses were a complete life-changing experience.
I believe in the work ethic and I had never taken a day off work unless I was genuinely ill. It was very difficult then to come to terms with the idea that I was being retired on medical grounds. I was sitting in the house on disability benefits and every morning I would see people heading off to work and I felt so envious of them.
I had enjoyed the craic at work and I went from being an important and valued member of a team to being at home full-time. My wife helped me a lot during this time but I knew I was far too young to be retiring. It was a depressing time in my life.
I got in touch with NICHS (NI Chest Heart and Stroke) after seeing a poster in my GP’s surgery, and I haven’t looked back since. Indeed, I haven’t missed a meeting. The support groups have been a real eye-opener to realise that other people have similar thoughts, feelings and experiences. The simple act of talking about my experiences with other people and hearing that they were in the same boat as me was the most reassuring. My diagnosis was challenging, both physically and mentally. Before 2011 I could not have told you what a tablet tasted like and then, suddenly, I am on medication every day.
But the people I have met at NICHS give me the support and tools to remain positive and manage my illness so it doesn’t manage me.
I now plan my day and all my journeys, so I’m not under pressure. If something used to take me an hour, I now plan two hours and I take my time.
I went to a concert in Dublin recently. Before the journey I planned exactly how far I would be walking between the train, the taxi and the stadium so I wouldn’t be rushing.
I have COPD but I don’t let it hold me back.”
Helen Mealey-Hunter (52), who works in retail, lives in east Belfast with her husband David (38). Helen, who has five children, says:
Ihave had breathing problems since I was nine years old. Initially it was thought I had whooping cough, but my mum realised the symptoms were similar to those of my grandfather who had asthma. The condition really affected my life. I had to use an inhaler and kept missing days at school.
In those days you did not get work sent home from school so it impacted on my performance and I was always behind my classmates. I was not able to participate in any games and would always be the child sitting on the bench while the rest were running around and playing.
In 2007, I had a baby and was transferred to the bakery in the
❝ If one other person reads my story and changes their lifestyle I will be delighted’
store I worked in. I kept getting chest infections. I would be off work for anything between two weeks and six weeks normally, although on one occasion it was 10 weeks.
When I was examined by the doctor it was discovered that I had lost 40% of the capacity of my lungs and had COPD.
Almost immediately I went from having one inhaler to taking nine to 10 tablets and three inhalers a day for asthma, diabetes, cholesterol and COPD. These conditions were all uncovered within a year.
I found out about the NICHS taking control course through my doctor and it has helped to transform my life.
I began by learning how to breathe properly and how to do very light exercises — what I call taking baby steps.
I was set realistic goals, such as going for a 15-minute walk twice a week. I was also told of the importance of a healthy diet and both those things have given me new confidence.
Unlike when I was in school and just sat there during games because I felt I was not well, I now have a new attitude.
Every Monday after attending the programme I go for a twohour exercise class with 13 other people from the NICHS session. I bought a ‘fitness’ watch and do 6,000 steps a day. There are nights when I am walking up and down the living room floor to reach my total.
One of the breakthroughs for me was admitting that I was ill and if one other person reads my story and it encourages them to change their lifestyle I will be delighted. The programme does work. My youngest child is 10 years old and I want to be able to keep up with her to an extent.
Recently we went to an amusement park in Scotland as a number of us were having birthdays around the same time and I went on all the rides. I would never have done that before. I now even have the confidence to dress up for charity events such as collections we took in the store at Halloween. My life has really changed. I have even ridden a Segway and laid a laminate floor in my home.”
Frank Johnston (72), a retired British Telecom executive, lives in Belfast with his wife Maureen (74). They have five grown-up daughters and a son. Frank says:
Iwas diagnosed with Chronic Obstructive Pulmonary Disease in February 2014. I had smoked heavily for a good part of my life but had actually given up six months before my diagnosis.
Apparently it isn’t unusual, once your lungs are breathing fresh air, for the damage to reveal itself and breathing to become more difficult. I spent six months having X-rays, ECGs and so on, and then was diagnosed with COPD.
COPD is a nasty condition. Your lungs are not able to use oxygen to their normal capacity and you have difficulty walking or carrying anything and all you really want to do is lie down. You become a couch potato and the condition gets worse.
Back in those early days I was having an exacerbation or crisis every five or six weeks. I would be pumped full of antibiotics and steroids, knowing that if they didn’t work I would end up in A&E unable to breath.
When you are going through an exacerbation it is very obvious to your family and those around you that you are struggling for breath. It was terrifying for me and extremely worrying for them to watch.
I also couldn’t sleep lying down. It panicked me and I found it very difficult to breathe. I had to sleep sitting upright in a chair, which of course is not particularly restful sleep.
I had to give up golf. I was a keen golfer. I wouldn’t say a good golfer, but a keen one. But that was all in the past and I basically became a couch potato waiting for the end.
One day when I was at the doctor’s picking up a prescription for my usual haul of inhalers and medicines, I noticed a poster from Northern Ireland
Chest Heart and Stroke. I called Pauline Millar, their respiratory support co-ordinator, about their monthly meetings and she was there at my house the next day, explaining how they could help..
Pauline wanted me to go on their Taking Control Self Management Programme.
She said that although COPD can’t be cured, it can be managed.
I didn’t believe her, but I decided to go along and found people there who had similar problems to me but were overcoming them.
They helped me gain a more positive attitude, to be more careful about my diet and to take moderate exercise.
It was a remarkable experience. I went on the programme as a complete sceptic, a man waiting to die, and left as a man who goes to the gym six times a week.
I was never a gym person. Before this the most energetic thing I would have done would be to move the mouse on my computer.
At Pauline’s suggestion, I went to Pulmonary Rehab at the Grove Health and Wellbeing Centre. From there, I started going to the Grove Leisure Centre in Belfast.
Now I use the treadmill and cycle, and sometimes the cross-trainer, rowing machine and a few of the weight machines. I am usually at the gym for two hours every day, including time in the sauna, steam room and chatting.
I am also back playing golf. I can’t walk the full course and have to use a buggy, but getting back to my favourite hobby has been very important to me.
It has been a complete transformation. I have gone from a very dark place to having a future.
Eighteen months ago I started what I call my ‘death diary’ noting all the financial and practical information that my family might need after I am gone. I didn’t finish it — I’ve decided it can wait a while longer.
I have not had any exacerbations for 18 months now and since completing the Self Management Programme I have had no problems sleeping — in bed, lying down, like normal. I might wake up two or three times a night but I am getting healthy sleep now.
In a recent check-up at the Respiratory Clinic, the nurse retook my spirometry test. When I asked her what was wrong, she said she was retaking it as my reading was better than the year before and she wanted to check it.
COPD is a progressive condition and yet my lung function had improved by 10%. Even though my lungs are not getting better, the exercise means that they are better able to use the oxygen in the air I breathe.
I have taken up Tai Chi which focuses on abdominal breathing and helps me to use all of my lungs. My lungs are damaged so I need to use as much of what I have as possible.
It just shows that exercise is vital to anyone with breathing difficulties. It can be very scary starting to exercise when you can hardly breathe, but it is worth it in the end.
I want to tell people that no matter how bad your health condition may appear to you, taking the right advice can give you a new lease of life.”
‘I have gone from a very dark place to having a future’
❝ I went from a man waiting to die to a man who goes to the gym six times a week