NHS care gave Stewart his life back after rare lung disease diagnosis

Stewart and Janine Armstrong on their wedding day
Stewart and Janine Armstrong on their wedding day

Published on 26 February 2020

Stewart Armstrong looks the picture of health.

But five years ago he was told there was only a 50 per cent chance of surviving till the end of the year, after doctors diagnosed him with chronic pulmonary aspergillosis.

The condition is caused by inhaling tiny bits of mould, and in Stewart’s case these grew in cavities in his lungs caused by an existing chronic disease.

The 40 year old, who lives in Ramsgate with wife Janine and runs an events company, is sharing his story to mark World Aspergillosis Day on Thursday (27 February).

He said: “We truly did not believe I would be here now based on what the doctors were saying.

“At its worst I needed oxygen at home, I couldn’t breathe after walking up one flight of stairs and I couldn’t work.

“I was told it was 50-50 whether I would make it to the end of the year if the medication didn’t work. And it didn’t work – nor did the second medication they tried.

“At that time that left just one other drug to try and it was really expensive but luckily for me it seems to be working.”

Finding a treatment that worked didn’t mean Stewart was out of the woods – he was still given only a 50 per cent chance of surviving three to five years.

He said: “This is the fifth year and I put that down to the medical care I received.

“Janine and I got married in September 2018 and our venue had a long waiting list but they managed to fit us in within six weeks.

“At the time things weren’t looking good and we thought it was the end game, and that if we had to wait I wouldn’t make it.”

Stewart was so poorly he could barely walk, and his oxygen saturation levels were in the 70s – in healthy adults they should be 100 per cent.

But thanks to the medication and his determination he was able to wean off the oxygen treatment and to get back to the gym to start rebuilding his strength and stamina.

Now his oxygen readings are in the 90s and he is able to tackle five-mile walks – something that was simply impossible when he was at his worst.

He said: “When I saw the respiratory nurse she said the only word she could think of to describe the transformation was miracle.

“When I was diagnosed, my first goal was to watch the new Star Wars film which was out at the end of that year. Now Janine and I are thinking 10, 15 or 20 years into the future, and we never thought that would be possible.

“I’ve gone from weekly check-ups to six monthly, and if I feel well I can push that back.”

While Stewart is well at the moment, there is no cure and he must constantly make adjustments to his life to maintain this period of good health – from investing in air filters for every room at home to avoiding germs and any activities or locations that may expose him to mould or dust.

He said: “Janine is like a sniffer dog now – she can smell mould and she will literally usher me out of the room.

“I don’t shake hands with people, I don’t go to the cinema in the winter months and if there is a flu outbreak I don’t really go out at all.

“I have become quite germophobic but I just can’t risk getting ill. It’s stressful for me but even more difficult for Janine because she has to watch me deteriorate.

“I do think if I lived in America or anywhere outside of Europe I would be dead because there just isn’t the understanding. We’re so lucky to have the NHS and I’m grateful for the care from Dr Malamis at the Queen Elizabeth The Queen Mother Hospital in Margate, and Professor Denning at the National Aspergillosis Centre in Manchester.”

Stewart is keen to raise awareness of the disease, after people assume it is similar to fungal nail infections.

He said: “If I had cancer, people would know how to react, but there is no road map for this and that’s the most frustrating thing.

“Before I got ill I managed six sales and marketing departments in London, I was always solving problems, and now this is a problem I can’t solve.

“Reading up and understanding the disease is one way I can get some control back.

“When I was diagnosed I just wanted to find someone who had survived so I hope my story can help others. It can be very lonely and scary when you’re diagnosed.”

Stewart is happy to help others who have been diagnosed with aspergillosis – contact him via his social media channels (@stewarmstrong on Twitter and Instagram), see his YouTube channel at https://www.youtube.com/channel/UCX25vSw9hYlt97TzWKsbmmw or email stewartjohnarmstrong@hotmail.co.uk

What is aspergillosis?

Aspergillosis is a disease usually caused by inhaling tiny bits of mould.

Most people are unaffected by the mould and do not get ill by breathing it in, but people with existing lung conditions or weakened immune systems are most at risk.

Symptoms include shortness of breath, chest pain, wheezing, or coughing up blood.

Medication cannot eradicate the fungus, but can slow down the progression and help keep symptoms at bay.

For more information on aspergillosis, see https://www.nhs.uk/conditions/aspergillosis/ and for help and support from the Aspergillosis Trust see https://aspergillosistrust.org/