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How I keep active with bronchiectasis

Scott has bronchiectasis and carries Pseudomonas infection. He shares how learning to focus his breathing helped him achieve a once-in-a-lifetime opportunity!

Diagram of lung lobes - British Lung Foundation
The right lung is made up of 3 lobes and the left lung has 2 lobes.

I was diagnosed with bronchiectasis when I was 9. My sister was diagnosed with the condition, and so my mother had me and my fraternal twin tested to be on the safe side, and it was discovered that I also had bronchiectasis. In those days, surgery was an option and so both my sister and I had a lobectomy (surgery to remove one of the lobes of the lungs) on our right lung.

They couldn’t find a cause for either of our conditions. We had tests as teenagers for hereditary or genetic reasons as to why we might have it, but nothing was found.

Scott, keep active bronchiectasis - British Lung Foundation
Scott competing in Japan in his 20s

I didn’t have any symptoms throughout my childhood and early adulthood. In fact, I was quite unaware of the long-term effect my diagnosis would have on my life.

At school I played a lot of competitive sport, including table tennis, football and judo. I focused on competitive aikido and even travelled to Japan to learn the martial art. In 1995, I won the world championships, competing against healthy athletes who didn’t have a long-term lung condition!

My bronchiectasis symptoms began to show

When I turned 40, I started to notice symptoms of my lung condition. I started to develop lung infections more easily and have since been taking antibiotics every day (nearly 20 years now). My lungs have been colonised by Pseudomonas and my lung capacity is now between 55-60%. This is well down on the 4.5 litres I managed to blow out as a young man. During more severe infections, I was given intravenous (IV) antibiotics in hospital. The ward was a fantastic facility. The first 2 times, I went in for 10 days of IV and had good results. But lately, the IVs have had little or no effect. I felt it wasn’t worth the 10 days in a hospital ward away from work, home and friends.

I didn’t doubt that my lung condition and capacity were going to get worse, so I try to maximise all I can do at any moment. I’ve seen some incredible sites, but as I noticed my lung condition deteriorating, I decided to do a trip I’d always wanted to do: the 4-day hike on the Inca Trail to Machu Picchu in the Andean mountains of Peru.

Each step took enormous effort

Climbing the Inca Trail was by far the hardest thing I’ve ever done! I’d previously had problems with altitude sickness, and so was prepared for this. But the hike up from 3,500 to 4,200 metres was nonetheless very challenging.

It’s difficult to describe the feeling of trying to walk uphill at altitude. It wasn’t painful, but like wading through thick treacle. Each step took enormous effort and I concentrated on keeping a steady rhythm of breathing, putting emphasis on breathing deeply out so I could breathe in what little oxygen there was on offer. 

The second day was the hardest part of the trek, a 1 km uphill slog. After several hours I reached the top of the Warmiwanusca mountain and it took me some 10 minutes to regain control of my breathing! But I felt a great sense of achievement that I had managed to overcome this challenge. I carried that sense of achievement through to the last day, when we descended into the Inca site of Machu Picchu. I had promised myself that I would never go to altitude again, so this was a once-in-a-lifetime moment. But I am glad that I pushed my lungs that hard and that they held up. The stunning views and historic sites were totally worth the hardship! 

keep active bronchiectasis - British Lung Foundation
Scott at Machu Picchu.

Keeping active is what keeps me going

Looking back now on my life, I don’t think it’s a surprise I took up judo and then aikido. Both are throwing arts with lots of percussion going through the body at each fall. I think this constant vibration of my lungs has kept them more open and stronger than they otherwise might have been. I’ve always pushed myself to the max – lungs included! After all, if you don’t use it you lose it. 

I know that a lot of people aren’t as lucky as me, and that just walking up a few steps can feel like doing the Inca Trail. But I think it’s very important never to give up and to do as much as possible to maintain a reasonable quality of life. Doing a physical activity is the best way to achieve that, and I would encourage anybody to take up the challenge of doing a little bit more than they currently do.

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15 November 2019