'When I was diagnosed with pulmonary fibrosis, I thought it was okay because it wasn't cancer, but it turns out, it's worse'
Idiopathic Pulmonary Fibrosis is an aggressive lung disease with no cure. To mark the condition’s awareness week, Alister Magee, from Co Antrim tells Mark Bain about coping with his diagnosis and his hopes for a lifesaving treatment
Speaking about his diagnosis with pulmonary fibrosis, Cushendun man Alister Magee says: "I didn't know anything about the illness and what to do at that time. I think I just buried my head in the sand, hoping it would sort itself out.
"My wife seemed to know more about the condition as she had researched different types of lung disease that I could have had; this is the one she did not want it to be."
More than 70,000 people in the UK suffer from the disease, with around half of those suffering from the most aggressive form, Idiopathic Pulmonary Fibrosis (IPF), which has no known cause, limited treatments and no cure.
IPF kills 6,000 people every year in the UK, with more than half dying within three to five years of diagnosis. In fact, more people die from pulmonary fibrosis than from leukaemia and many other cancers.
Those are the statistics Alister (52) and his family have been left to fight against.
Childhood sweethearts Alister and Paula Magee grew up in the small coastal village in the Glens of Antrim and have now been married for 27 years.
They have two children and a grandchild. To the casual observer, they enjoy the perfect family life, but, as Alister reveals, two years ago all that changed.
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"I first noticed things were different towards the end of 2017 when my breathing felt different and I kept getting recurring chest infections," he says.
"I finally visited my GP and I was sent for a chest x-ray and within a couple of weeks got a call to go for another one. It was six months, April 2018, before I received a diagnosis.
"When I left the consultant's room, I didn't know what he'd been talking about; he had drawn a diagram to explain what was happening inside my lungs, but I just remember hearing him say it wasn't cancer, so when I left his office I thought, well, that's okay then, as long as it's not cancer.
"It was my wife Paula who told me on the way home that he had said there are worst things to have than cancer and that what I had was worse than cancer."
That came as a real shock to the system for Alister.
"I didn't talk much about it for a long time," he says. "I think I was just adjusting to the thought that there was actually something wrong with me. It took me a full year before I finally came to terms with it."
Paula checked out the family history and discovered a few relatives had died of the condition when relatively young.
"My uncle had died of the same thing more recently but no one knew what he had until it was written on his death certificate," he says.
"I had to leave it to Paula to break the news to the family."
Son James (27) lives in Australia and daughter Rebecca (26) lives in Cushendun. The couple have one grandson and also an extended foster family, having taken on that responsibility in recent years since their own children grew up.
Both their foster children, aged 13 and nine, have complex needs.
"Paula said it was hard telling the younger children about the illness in a way they would understand," says Alister.
"I was still working at this stage as a handyman and was getting breathless on exertion but my wife arranged a trip for us to Portugal where we sat and thought about the future.
"Paula then arranged for me to go on a trip of a lifetime to Australia; she knew I had always wanted to go but was never in a position to. So in June 2018 I went over there for two weeks with my brother and I got time to spend with my son and see as much as I could.
"I think Paula knew my condition was progressing more than I did and she wanted me to go and see and do everything I wanted to while I was fit enough.
"But in July 2018 I became more breathless. My oxygen levels were so low and I needed oxygen when walking. I was told I needed to get used to taking it and think of it as my best friend. It finally hit me that I was actually a sick person.
"I had to give up work but I still believed I would get better."
But in August last year Alister's condition deteriorated further. It was progressing at a quicker rate than the health professionals could have imagined.
"I started needing oxygen 24 hours a day and I was beginning to feel down," he reveals.
"I started to realise time was not on my side. I didn't have the energy to do anything. My wife asked me straight out 'was I going to give up or fight?' She told me she would push for a lung transplant but only if I didn't give up.
"I felt drained all of the time but seeing my grandson and trying to stay strong for our foster kids got me through the dark days.
"At our next appointment with the consultant in October last year my wife asked the question that everyone had been avoiding: 'Is this disease going to affect my life expectancy?' He confirmed that it did, my oxygen levels were now too low to even be considered for the medication to prolong my life.
"She also asked about a lung transplant. The consultant said that it was not always an option, but as I had been fit until that point he would put my name forward to be considered.
"Thankfully all the tests were in my favour. When we had a meeting with the transplant team they informed me it was not just as easy as being put onto a waiting list and that we would have to go to Newcastle for a full assessment before a decision would be made."
Arrangements were made there and then that the couple would travel to Freeman Hospital in Newcastle to start the assessment but in December Alister collapsed at home. Admitted to hospital, doctors discovered he had a pulmonary embolism which had damaged his heart.
"My son was sent for from Australia and was home within 24 hours as there was a chance I would not recover," says Alister.
"I was in hospital for a week before being sent home to take it easy. We had a lovely Christmas then, all the time thinking it could be my last without the transplant."
The visit to Newcastle finally happened in February.
"We got good news that I was suitable," adds Alister. "However, they said I had to lose two stone in weight first. But a burden seemed to lift from me and I have been in a fighting mood since then.
"By April, exactly a year since my diagnosis, I felt I had finally come to terms with my illness.
"I'd already lost one-and-a-half stone. I was able to exercise more. I was feeling more able to manage my illness. Now I rest when I have to and I have accepted that I can't do everything I used to, but I have found other ways to be useful about the house with the children.
"My wife persuaded me to go to an IPF awareness fundraiser with a support group for the charity Action for Pulmonary Fibrosis that was in our area. I went reluctantly but was surprised when I got a lot from it, meeting people with the same condition. They knew exactly what I was going through and that was a big help."
Alister and Paula will now be involved in fundraising events to mark IPF Week, which runs until Saturday.
"We held a tea/coffee morning last Saturday in Glenmona House, Cushendun, and that was the first of a few events," says Paula.
"I will have a couple of friends and a niece running in the Belfast half marathon this Sunday.
"Before that there is a lunch on September 21 in SOLAS, Ballycastle from 11am-2pm. And we also have a quiz night in Starbucks at Junction One in Antrim on September 25 from 7-9pm.
"We're trying to do what we can to raise awareness and the final event planned at the minute will be an Eighties disco in Hunters Bar, Carey, on October 5."
Alister said he feels it's important to keep as active as possible and spread awareness of how the disease can affect the whole family.
"I do feel there needs to be more awareness as people do not seem to know enough about it and the implications it has on a family," he says. "It is a terminal illness and needs to be treated as such with a pathway of care put in place on diagnosis.
"It's a progressive disease and in my case it seemed to progress very quickly to the point I was not suitable for the medication that was available if caught early enough.
"When I was given the diagnosis, we were told to come back in three months, at no stage then were we made aware by of the serious implications.
"More information should be available at these reviews.
"People want honesty so they can plan for the future.
"Only for my wife doing her own research, asking the right questions and pushing for a lung transplant I would not have been given any hope of survival.
"I know that not everyone is suitable or has the support that I have, and I feel very grateful for being given a chance to have a transplant, which is my only chance to survive this horrible disease.
"I'm also aware that there are families that have to go through the heartache of losing someone for lungs to become available.
"Today I have hope but the whole experience has been very humbling and I'm very grateful to all the health professionals for their support and to all those out there that are organ donors."
For now, Alister is being kept under review by the transplant team at the Freeman Hospital in Newcastle.
"He is not on the active waiting list yet but has been assessed as suitable for transplant," adds Paula.
"We are due to go back over in November but they will see him sooner if his condition deteriorates."
In the meantime, Alister has also volunteered to take part in the campaign 'Listen To Our Lungs'.
"The idea is to help other GPs and health professionals learn what a patient with Pulmonary Fibrosis chest sounds like so they can make a referral if they have concerns with other patients," says Paula."There are so many people being misdiagnosed. It's important we get the awareness out to the public as life can be prolonged if caught early enough but sadly in my husband's case it was too late."
Action for Pulmonary Fibrosis is spearheading a Listen To Our Lungs campaign, calling on everyone affected by lung fibrosis to visit their GP and ask health care professionals to listen to their lungs to help them more easily recognise the early signs of the disease which includes velcro-like crackling in the lungs. Visit www.actionpulmonaryfibrosis.org for more information