Living with COPD: when every breath is difficult
COPD is a common lung disease caused by a number of pollutants, cigarettes being the most avoidable. As countries everywhere observe World COPD Day today, Lifestyle spoke with two people now suffering from the disease.
Jackie Parkinson smoked for 42 years.
She’s now paying for it.
The 80-year-old has stage four COPD. It’s the most severe stage of chronic obstructive pulmonary disease. What that means in a nutshell is her breathing is extremely limited. Despite that, she counts herself lucky. Oxygen concentrators and daily medicine make breathing less arduous. She also has great support from her family, Liz Boden of asthma charity Open Airways, King Edward VII Memorial Hospital asthma nurse Debbie Barboza and community physiotherapist Andrew Cooper.
“Four years ago I couldn’t have [a] conversation,” she said. “Four years ago I couldn’t talk in sentences because I couldn’t breathe. My lungs would tighten up. The best way to describe it would be like trying to move your legs when they feel like they’ve got a 5lb bag on them. You don’t want to keep lifting them up and down because they ache so much.”
Her illness developed over years of smoking. Mrs Parkinson had her first cigarette with friends at the age of ten. Cedar bark was a popular substitute whenever they couldn’t find proper ones.
“We went to England when I was 15,” she said. “We left in 1950 with the close of Dockyard. The whole family went back to England and I worked in a spinning mill in Lancashire. By the time I was 16 I was smoking six a day and then I got to ten. My mother complained but I said, ‘Mum, stop it. It’s the only vice I have’.”
Twenty-eight years ago, she realised she had a problem. Her doctor, Gordon Black, told her that her alveoli, the tiny sacs that allow oxygen and carbon dioxide to move between the lungs and the bloodstream, were dying. His diagnosis was stage four COPD.
“I remember how scared I was when I found out,” Mrs Parkinson said. “At first it was just an inconvenience, I wasn’t breathing right. And then it got worse. I went to see Dr Black because I was coughing so bad; I was coughing up blood.
“He said I’m going to show you what you’re doing to yourself. He drew lungs and said I was killing off all the little cauliflower bits, which was why I was coughing. I don’t think I ever smoked more than a pack a day.”
COPD is one of the leading causes of death in the United States; more than 12 million people are diagnosed with it. It’s estimated an additional 12 million have the disease and don’t know it.
According to Open Airways it can be caused by smoking, occupational exposure to dusts and possibly, outdoor air pollution.
“COPD is a disease that makes it difficult for air to move into and out of your lungs,” said Mrs Boden. “It causes the airways of the lungs to be inflamed and become obstructed, or blocked. Drawing a breath can be a difficult, frightening struggle. Some people with COPD suffer from both chronic bronchitis and emphysema. Both make breathing difficult and cause breathlessness.”
Mrs Parkinson knew all of that but still didn’t quit — and then she went out for a night of fun.
“I went to see a hypnotist at Clayhouse Inn about 28 years ago,” she said. “I nearly killed myself laughing at some of the people. One person went on stage and recited the alphabet in the most dramatic way he could think. If you knew the type of person he was, it was so out of character. Anyway, the hypnotist said that night that he would do a private showing — if you had eating problems so you couldn’t lose weight, if you had smoking or drinking problems, come see him.
“I never had a cigarette after that. It was the best $20 I ever spent. I haven’t smoked in 28 years.”
Four years ago, doctors told her she needs to spend 16 hours each day on an oxygen concentrator to get a steady supply of air. The home machines, which resemble dehumidifiers and are just as heavy, come with a price tag of $2,800. Health insurance pays 80 per cent of rental costs, or $140 a month.
Open Airways lends the device to people when they have them in supply. The charity is now appealing to people who own concentrators they no longer need, to donate them.
Patricia Colmet watched her father die from emphysema and her husband from lung cancer.
It wasn’t enough to make her stop smoking.
The 68-year-old thinks she was about 14 when she had her first puff in the Horse and Buggy, a once popular pub on Queen Street.
“It was awful,” she said. “But I took another puff [determined] to get the hang of it. I never would have started if I had all the information [about smoking] that my children had. But everybody smoked in the ‘50s and ‘60s. It was rare if they didn’t.”
By the time she was 18 she was hooked, eventually smoking a pack a day.
“I stopped four years ago, at 64, after I ended up in hospital. One Sunday night I was sitting up and couldn’t get a deep breath. I lit a cigarette as usual, but then threw it out the window and that was the end of that.”
Once admitted, she stayed at King Edward VII Memorial Hospital for about ten days. Doctors determined she had COPD and a “very bad chest infection” and wanted her lungs to be completely clear before she was released.
“It was a strain just trying to walk down the hall [at KEMH],” Mrs Colmet said. “I don’t think I scare easily but it must have scared me because I stopped smoking. The stupid thing is my father had emphysema and my husband had lung cancer that spread to his brain.
“My logic was, what’s the chance something will happen to three people in a family? I don’t feel any better now that I’ve quit. I felt fine until that Sunday night.”
Although it’s been four years since she smoked, the habit of reaching for a cigarette is still there, Mrs Colmet added.
“I was never a big drinker,” she said. “I would have a coffee and a cigarette. It becomes like a best friend. When I first stopped, I didn’t know what to do with myself.”
Once diagnosed with COPD, Open Airways recommends that people:
• Quit smoking. It’s the only way to slow the progression of COPD. It relieves chronic cough and sputum production, wheezing and shortness of breath. It also reduces the risk of cardiovascular disease and lung cancer.
• Exercise. Benefits include improved breathing, improved endurance of leg muscles, and improved quality of life.
• Ask about flu and pneumonia shots.
• Practise pursed-lip breathing to control your breathing rate and shortness of breath; increase the flow of air out of your lungs; reduce the amount of energy needed to breathe and increase your sense of control and ability to perform activities.
• Control anxiety levels. Emotions, as well as the fear of suffocation, can cause shortness of breath which can lead to anxiety, superficial breathing, muscle tension and further shortness of breath. Shortness of breath and anxiety can increase your fatigue and significantly decrease your ability to perform activities.
• Take their medication the way the doctor instructs. Different medications may be prescribed to manage COPD. Review medications annually with your doctor.