Living with COPD: ‘Suddenly I had trouble breathing … I was very frightened’

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With the help of his carers, a gym programme and an optimistic outlook on life, Howard Lee, 65, has bounced back since being diagnosed with chronic obstructive pulmonary disease (COPD)

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I was first diagnosed with chronic obstructive pulmonary disease (COPD) in 2008, after I had an operation that went wrong. I had an emergency second operation to mend my bowel, and when I came round, one of the nurses said: “You have COPD – I can hear it in your breathing.”

A consultant came to confirm the diagnosis. I had no idea what they were talking about. I gave them the same blank stare as I get now when I say to people I have COPD.

My symptoms were just that I was having difficulty breathing, they could hear me wheeze. So they put me on treatment until my condition was fully diagnosed. When I went to see the consultant, he said: “You have COPD, you will always have COPD, and it will only get worse.” I will always remember it; I thought it was a death sentence.

The operation had precipitated my condition; suddenly I had trouble breathing. Before I was diagnosed, I knew I had a problem, just not that one! Prior to my operation, I was an 80-a-day smoker. My wife had spent years trying to get me to give up.

I was very frightened initially after I was diagnosed, and I looked up everything I could find about COPD. It was helpful, to a degree.

The most helpful person was a friend who was a pharmacist. He said: “You can live a normal life,” and explained the disease to me. He talked me through it and told me what treatment I would get. He didn’t tell me about the chest infections – but that you learn.

I should have had that conversation with the consultant, but I wasn’t in the right headspace when I was first diagnosed. Subsequently I spoke to my GP, who put me in touch with another COPD consultant in the NHS. She explained to me exactly what the disease was about. She also explained about the COPD-at-home service which is available in my area.

They try to avoid people being admitted into hospital when they have an exacerbation [flare-up], so there is a fantastic network of carers who come to support you at home. If I have an exacerbation, someone is with me within an hour. I have used that service an awful lot over the years.

My family have been a fantastic support to me, although my grandchildren can’t understand why I can’t run up and down stairs. The greatest thing I have done to help myself is losing weight. I lost four stone in 12 months. I weighed 17 stone at one point – now I am just over 13. It has made the most enormous difference.

The last time I went to see the consultant, my breathing had improved by more than 20%. It does make a phenomenal difference. I used to have, on average, eight exacerbations every year. So far this year, I have had one.

The pulmonary rehabilitation programme also helps. It involves mainly using gym equipment, but using it gently. There’s a running machine, and I walk on it, elevating it so I walk up hill slightly. I get breathless; I’m testing myself all the time. Every time you improve. I used to go to the gym in my 30s; now I’m using the same gym equipment, but less strenuously.

I think the best thing that people with COPD can do is to be open-minded about themselves, to know what their capabilities are, and to improve on those capabilities. People say: “I used to do this, now I can’t.” We, as sufferers of COPD, are so worried about what might happen that we hold ourselves back. But you have to have a positive mental attitude.

People often don’t know what COPD is. They know about asthma or emphysema, but with COPD you get a blank look. I am trying to educate them. I try to get it out there as much as I can. I will do anything I can to make people more aware of COPD.

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