Malcolm's story

From the late 1990s, Malcolm suffered from persistent chest infections.

Malcolm

He first noticed something was wrong whilst playing golf with his friends – he constantly felt out of breath. At first Malcolm assumed it was because he smoked but he soon realised that all his friends were smokers and that none of them were suffering from the same thing.

He admits that it did take him a while to go and see his doctor, “you know what men are like, they tend to try to ignore things”, he says. When Malcolm finally did visit his doctor, he was prescribed antibiotics for a chest infection. The infection went away for a time but soon after reappeared.

By 2004, Malcolm had given up smoking but still suffered from constant infections. His doctor told him it was caused by the smoking but at no point were any tests on his lungs carried out. It was only in 2005 when Malcolm visited his doctor again that his GP really took notice. Malcolm comments:

“I didn’t talk about ‘infections’ this time, I explained that I couldn’t breathe properly, it was only then that they started listening to me”.

He was immediately referred to a heart clinic; again no tests on his lungs were carried out. After a year of examinations at the heart clinic, Malcolm was finally told that the problem was with his lungs and he was referred to a lung specialist. In November 2006 he was diagnosed with Idiopathic Pulmonary Fibrosis (IPF). Initially, Malcolm’s consultant recommended a wait and see approach.

“She didn’t want to prescribe steroids or any other aggressive medication as she felt they would be too toxic for the lungs”, Malcolm explains.

He was put on an inhaler which dealt with his COPD, which he was also diagnosed with, but no other treatment was offered or discussed. No information was given to Malcolm about his condition so he turned to the internet to find out more about the mysterious IPF disease. What he found scared him beyond description:

“What else can your reaction be when everything you’re reading tells you have a life expectancy of three years”?

However what began as fear soon turned into resilient determination.

“A lot of people give up, they leave their jobs, and they stop their hobbies. This is what they’re told to do, but not me I just keep going”, he says.

An avid ballroom dancer from a young age, Malcolm still likes to take to the dance floor and until last year continued to go on walking holidays in the Swiss mountains with his wife, something they have done for many years.

“I would still go but my wife says she’s scared in case anything should happen to me whilst we’re out there”.

Malcolm enjoys his long walks at home, walking 2 miles almost every day. He has also been able to continue working as a part-time computer consultant.

“I’m only part-time because it’s such a niche speciality that I have. But I’m on call 24/7, 365 days a year. I’m always ready to go if I have to”.

Malcolm is now on pirfenidone which he says is the 1st in hopeful drugs for IPF patients. He has also undertaken pulmonary rehabilitation but found it to be more geared towards patients with COPD.

“We knew more about IPF than (the doctors) did, they just didn’t seem to understand”.

His consultants have told him that it was unlikely that smoking was the cause for his disease although it probably did not help him.

“The truth is no one knows. That’s what idiopathic means, no one knows so no one can tell me anything for sure”.

This is what keeps Malcolm so determined to raise awareness and garner support for research into IPF, the fact that it still remains such a mysterious disease. Malcolm explains that the internet really helped him come to terms with his condition and to meet people going through similar experiences. In 2008, following a heart scare, Malcolm went back to the internet and began doing more thorough research.

“It was different this time; I wasn’t scared by what I found”.

Malcolm joined an online forum where he made many friends that also suffered from IPF. The forum was used for sharing information and experiences and offering support to each other.

“I still speak to many people, and sadly I’ve had to say goodbye to many more. It’s very sad, but that’s what happens”.

In 2011, Malcolm, along with the friends he met online, founded the Pulmonary Fibrosis Trust, of which he is treasurer. He says he would also like to set up a respiratory alliance so that information can be more easily shared.

He was on the specialist respiratory group at the NHS England AGM where he was asked to present this year. Malcolm has a joie de vivre that is inspiring. Determined to not be dragged down by a disease that no one fully understands, Malcolm says he will keep working to ensure awareness about IPF is raised.

“We don’t do enough for people who have IPF. Many doctors will talk to you about COPD but most of them don’t know anything about IPF. COPD is only one of many lung conditions and patients need their GPS to be able to explain to them what it is they have”.

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22 September 2013