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Every breath he takes and every move he makes – Mariano’s story about COPD

Health | 1/12/2021
Every breath he takes and every move he makes – Mariano’s story about COPD

Living with COPD for over 20 years, Mariano Pastor has accomplished things that once seemed impossible. One step at a time, he has learnt to manage his disease and carry on with his life.

When mountain climbers try to summit the world’s highest peaks, the thin oxygen level is their worst enemy. They need to breathe faster and sometimes rest for several minutes before taking one more step.

For people with COPD, walking down the street can feel as hard as reaching the top of mount Everest. Their limited lung capacity makes such routine tasks strenuous. Luckily, many are able to overcome this challenge.

Mariano Pastor is one of them. “I’ve learnt to live with the disease and do things that once seemed impossible,” he says. “Above all, I stopped being afraid.”

The long journey to a diagnosis

Normally, COPD affects people over 40, but Pastor was diagnosed at 31. After having respiratory infections for years, he was referred to a lung doctor. “I was diagnosed with severe COPD, but I wasn’t told it was a chronic, progressive disease,” he explains. He simply received a piece of paper with his prescription, without any further guidance.

At the time, his condition was manageable, but it worsened when he was 36 and the specialist prescribed oxygen therapy 16 hours a day.

Instantly, his life changed. “That same day, someone was wheeling in a tank of oxygen at my home,” Pastor recalls. The next day, he got sick leave and never returned to his job as a logistics manager in a multinational company. “Until then, I wasn’t really aware of the extent and the severity of my disease.”

One year later, he found out the origin of his COPD was genetic, because of alpha-1 antitrypsin deficiency, which explained the early onset of the disease. “From then on, I became a well-informed patient, managing my disease and looking for the best solutions.”

When one small step is a giant leap

He is now 56 years old and, although his lung capacity has not changed, he is able to make the most of it. “It used to be really exhausting to take two steps, but I’ve later managed to walk 1,000 metres without taking a break.”

He lives in the centre of Madrid, Spain, and he can now walk to most places. “I just go about my daily life: I walk around my neighbourhood to go to the pharmacy, to the supermarket…”

Accessibility measures do not make much difference to people with COPD. “For us, going up a ramp is as hard as going up a flight of stairs,” Pastor explains. That is why every step outdoors is a victory. He enjoys spending time with family and friends and attending social events.

He also used to travel — until COVID-19 put a temporary halt to it. “You have to do a great deal of planning: knowing where you’re going to stay well in advance, request oxygen tanks to be ready for your arrival… but all can be done,” Pastor says. “The one thing you can’t do with COPD is improvise.”

Wehale-11-20-Mariano-Pastor-1280x960.jpg

Mariano Pastor’s life changed for ever the instant he was diagnosed with COPD. But he has learned to make most of the tough situation.

On the move

Pastor emphasises the importance of physical activity for people with COPD. “Being idle is the worst thing you could do.” He exercises regularly at home: he rides a stationary bike, runs on a treadmill and lifts weights. “It is important to keep your muscles strong, because weak muscles require much more effort, also for breathing.” 

Physical rehabilitation and chest physiotherapy have helped him keep a healthy lifestyle and breathe more efficiently.

He must use supplemental oxygen 24 hours a day, but he is more independent thanks to a portable device that can be carried on a backpack, a technology that is now more accessible.

Inhaled treatments have also evolved, becoming increasingly simpler. “The easier it is to use, the easier it is for patients to follow the treatment,” Pastor points out.

You’ll never walk alone

According to Pastor, doctors now have a better knowledge of COPD and are able to diagnose it. However, he wishes there were more awareness about the disease, so people with symptoms quit smoking and look for professional help right away: “The earlier it’s diagnosed, the better.”

When he was still learning to live with his condition, it was very useful for him to meet other people with alpha-1 antitrypsin deficiency. Now he is the president of Fenaer, the national federation of respiratory disease associations in Spain, and he is very involved in coordinating with members and organising activities.

They offer information, psychological support and physical therapy workshops for newly diagnosed patients. Most importantly, they can connect with other people overcoming the same challenges.

“You can do all sorts of things with COPD — but slowly and with a lot of planning,” Pastor tells them.

 

By Rodrigo Ordóñez

Photo by iStock and Mariano Pastor

 

References:

Alpha 1-antitrypsin deficiency, Lung Fact Sheet. European Lung Foundation. https://www.europeanlung.org/assets/files/en/publications/alpha1-anti-trypsin-en.pdf

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