Living with emphysema

published in Reader's Digest,
26 July 2017

link to Reader's Digest article

lungs disability

What’s your first thought on waking? Take a shower? Pour the coffee? Check the news? For some, being able to breathe is the first priority.

What is emphysema?

Your lungs contain about 700 million alveoli: springy little air sacs that inflate and deflate with every breath like tiny balloons. Blood flows over these sacs, picking up oxygen.

In emphysema, the air sacs begin to break down and become bigger balloons; your body receives less oxygen as a result. They also become less elastic, like an old rubber band, and the lungs can over-inflate due to air-trapping, putting pressure on your diaphragm, making it even harder to breathe.

I spoke to Pat Andrews, diagnosed with emphysema 15 years ago.

Life on oxygen

Pat wakes at 6am and places an oxygen nasal cannula in her nose (people can be prescribed oxygen when their blood oxygen levels become low on exertion). This is attached to an oxygen concentrator in her house by a long tube and she has mastered walking around the house while connected; when going out she has a portable oxygen cylinder. She’s dependent on oxygen therapy for 16 hours of every day, and Pat admits that breathing is still a struggle despite the extra oxygen.

Inhalers also help to keep the airways open: she takes Spiriva, a once-daily, long-acting inhaler in the morning, and Salbutamol, a quick-acting blue inhaler before any exertion.

The diagnosis

According to Liz Jess, respiratory nurse, “The first symptom of emphysema is usually shortness of breath, initially on exertion, and as the condition progresses at rest. Unlike bronchitis, the patient with emphysema doesn’t cough that much, and when he or she does cough, they’ll produce little sputum. You’ll also see an increased breathing rate and pursed-lip breathing (tightly-pressed lips).” The pursed lips help lessen the air-trapping.

For Pat, shortness of breath at the gym was the first sign that there was a problem with her breathing. A trip to her GP confirmed the diagnosis.

Recognising that, unlike Pat, many people fail to listen to their lungs, the British Lung Foundation have created an online breath test to help you decide whether a medical opinion is necessary.

Keeping well

Quitting smoking is the most effective way to halt the progression of the disease, and to stop it developing in the first place.

Pat also tries to protect her lungs from infection: she receives the annual flu jab and tries to keep away from people with colds. Physical exercise and breathing exercises are also important.

“Most emphysema patients are thin because of the calories they burn up trying to breathe and because their appetites are poor”, says Liz Jess. It’s important that the person with emphysema takes a diet high in protein and calories.

Finding support

Pat has valued the support from respiratory nurses at her local GP surgery and hospital. For two years she also attended a Singing for breathing class. Dr Nicholas Hopkinson, from the British Lung Foundation, has shown that singing is good for the mind and body.

Breathe Easy support groups are run by members of the British Lung Foundation across the country; Pat helps to run a local group where speakers have covered everything from medication to exercise, from Crystal Palace to Wimbledon. Chronic – or long-term - illness, which includes emphysema, can lead to loneliness; Breathe Easy groups help to combat this, proving that there really is power in peer support.

For further information and help on lung conditions, visit: British Lung Foundation.