It’s a full-time job managing your lung condition, and I’m still learning now

Andrew, 64, lives in Worcestershire and works as a computer engineering technician. He was diagnosed with chronic obstructive pulmonary disease (COPD) in 2011. His story highlights the importance of a patient understanding their lung condition in order to manage it through exercise.

Andy with his daughters
Andrew and daughters Gemma and Sasha

I asked my GP what I could do to help myself

Nine years ago, when I was 55, I was diagnosed with COPD. About three years before my diagnosis, I had noticed that I was getting short of breath. Because I smoked, I expected this, so I didn’t think there was anything serious happening in my lungs. But two years after I had given up smoking, the extreme shortness of breath in the hot weather I was experiencing was worrying me, so I made an appointment with my doctor.

They diagnosed me more or less on the spot. This was a shock. I was also sent to have a chest X-ray which confirmed that I didn’t have a different condition, like lung cancer. When the results came back, I went to see the GP and asked him, "What can I do to help myself?". I’m lucky because my GP also has a lung condition and cottoned onto to what I was asking. I wasn’t asking about medication, but how I could help my lungs by changing my lifestyle. He firmly said, "Exercise.” I started exercising by walking three to five miles, every day. In fact, I enjoyed this so much that I did a charity walk of thirty-four miles in a day for the British Lung Foundation – I raised over £1000 in total.

I’ve learnt to listen to my lungs

I learnt a lot about the physical side of my condition by reading and talking to people. I realised that nobody is going to help me, I’ve got to help myself. I thought, ‘I can sit on the sofa and wallow, or I can try and manage it and slow down the progression’. I don’t say ‘I’ve got COPD’, I say ‘it’s my COPD and I deal with it my way’, and I try and have a healthy outlook on life.  In a strange way, it’s been the making of me because I’ve never been as fit as I am now, but I’ve got a chronic condition.

Before my diagnosis, I was just a normal sort of working bloke – I would hear all the gym-bunnies saying a good workout makes them feel better, but it wasn’t for me. But once I started walking, I realised I felt good after a nice hard, long walk. I’m not saying that I go steaming off every day.  There are days where I can’t do twenty yards, so I stop, get my breath back, slow right down, and try my best to complete the walk. And there’s other days where I absolutely fly.

I’m maintaining a level of fitness that suits me and if I drop off and I have a bad couple of months where I’ve fallen off the wagon, I’ll get back on it. The feeling it gives you when you get back to where you want to be is great.  But over the years, there is a decline, without a shadow of a doubt, and I’ve accepted that. Nowadays, it’s just nice to walking up the local hill in one go and stand at the top and look at the countryside and come back down. As I’m getting older, it’s time for me to enjoy the walking and stop timing myself and monitoring my health that way.

It’s a full-time job managing your lungs, and I’m still learning now. I’m learning about my own body and about my own condition. To be breathless as opposed to out of breath is two totally different things and to not be able to breathe is awful. When I am walking, I’ve learnt to listen to my lungs, and I know when it’s time for me to slow down, and when it’s time for me to speed up. I thoroughly enjoy it.

You’ve got to learn about your own condition

Before I was diagnosed, I had never heard of COPD. I’ll never forget asking the GP, ‘What is COPD?’ and their reply, "it’s serious and it won’t go away. It’s obstructive which means it’s stopping you breathing.  And pulmonary is to do with your lungs, and disease."  I was still none the wiser and I felt lost because I had been told I had a condition which I didn’t understand, and I had never heard of. In the GP surgery, the leaflets available and information on the walls tell you to eat healthily because of diabetes and to do this and do that because of heart disease, but there wasn’t anything on COPD. I think we’re largely forgotten and brushed to one side.

My advice to you if you have just been diagnosed with COPD is to exercise and learn as much as you can about it.  It might be frightening, but learning about your condition will help you start to manage it. Go to the NHS website, that’s pretty good for reference.  There’s a lot of rubbish online about COPD and I think you’ve got to go to a reputable source. I’m solely interested in my disease, my COPD, my emphysema – I’m the one that’s got to deal with it. I know that my lungs are shot and the elasticity has gone and you can get hyperinflated when you exercise if you’re not careful. I’ve learnt that and how to deal with it my way.  There’s not one remedy that fits all people, you’ve got to learn about your own condition and how you react to it, and what suits you to stop feeling breathless and fatigued.

 

The Taskforce is calling for the introduction of a clear patient pathway for timely, accurate and complete diagnosis for everyone with breathlessness and other respiratory symptoms.

Early and accurate diagnosis is critical to improve the health and wellbeing of people with lung disease. Identifying the disease at the earliest stages offers the best chance to take measures to slow its progression, which could add years to people’s lives and improve their quality of life significantly.


Comments

I was diagnosed 2 years ago. I'm also from Worcester. I am a support worker in a retirement village. Luckily my managers are understanding when I get very breathless.
Great story ! If there are people local to Worcestershire, Herefordshire and Gloucestershire interested in forming some kind of positive, informative, supportive group then I am happy to set something up. Thinking maybe a WhatsApp group ?  Let me know on Twitter @PaulineHMasters

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15 March 2021