Robert was in his late 50s when he started to notice that he was feeling out of breath more than usual. He’s now 68 and lives in Dundee, Scotland.
“Over a few years I became aware that some things were making me breathless, like walking up the stairs or up hills. It gradually got worse, until one day in 2012 while out walking my dog with my son, I got extremely out of breath, and my fingernails went a funny blue-grey colour. I took my son’s advice at that point and decided to tell my doctor.”
Robert’s GP listened to his lungs and heard a crackling sound when he took a breath – a tell-tale sign of Idiopathic Pulmonary Fibrosis (IPF). Robert was sent for a chest x-ray which indicated that he may have IPF.
“The doctor told me he thought I had IPF. I’d never heard of it before. He printed me out a 3-page Google article and sent me on my way. When I got back into my car, I sat and read the printout. It was only on the last page, in the last paragraph that I read the prognosis: 3-5 years life expectancy. This completely knocked me for six. I rang my wife and told her…she was in complete shock.”
“When you get news like that, lots of things start running through your mind. It might sound trivial but, I really enjoy buying new shirts. I thought to myself, will I buy another shirt? Is there any point?”
Nobody knows about IPF
Robert wanted further confirmation that he had IPF, so organised to see a consultant through his health insurance. A scan confirmed IPF. Though Robert’s diagnosis came only a few months after his first visit to his GP, the scan showed that he had been living with the disease for several years and it was progressing.
“After that I really went into a state of depression. I didn’t know what to do. Everything seemed to collapse round about me for a while. Nobody I knew had heard of IPF.”
“People just assume it’s from smoking, but it’s not. We don’t know what causes it. Anyway, I’d given up smoking back in 1985.”
For a number of years after his diagnosis, Robert didn’t feel any other negative symptoms from the IPF, other than the breathlessness he had come to expect during certain tasks. He even continued to work for a full year after he was diagnosed.
However, in January this year Robert got a chest infection which meant he had to go to hospital.
“I didn’t know what was happening to me: coughing up dark phlegm, feeling very flu like and utterly exhausted. It got so bad my wife called the NHS helpline and was advised to take me to St Andrews Hospital where I would see a doctor. He immediately put me onto oxygen and arranged for an ambulance to take me to Ninewells Hospital in Dundee.”
“I had a three week stay in Ninewells, where I had a bronchoscopy, x-rays, blood tests, antibiotics, steroids, oxygen – the works. I now know I had what doctors call an acute exacerbation. While recovering one of the junior doctors drew the short straw of informing me that I was now part of the “DO NOT RESUSCITATE” list should I have another exacerbation. Again I was totally knocked for six.”
Robert recovered enough to go home, but two weeks later was back in hospital after his oxygen levels fell. Now Robert has an oxygen concentrator and compressor at home, which he uses throughout the night and whenever he is doing anything strenuous. He also has two portable oxygen cylinders for ambulatory use.
Despite his condition, Robert is determined to remain active, and positive, as possible.
“I’ve been keeping fairly well over the past few months – I even went to Portugal for a couple of weeks! Though it was expensive hiring the portable oxygen concentrator. At home, I get a gardener in now as we’ve about 20 steps up to our garden. But I still walk my dogs, oxygen on my back, for as a far as I reasonably can every day which keeps my lungs working. Exercise is very important for people with IPF, that’s why I found pulmonary rehabilitation classes so helpful.”
“My consultant, all the local and hospital medical staff, physio, pulmonary and local pharmacists have been great. So have my fellow “IPFers” who go to the same support group as I do in Ninewells or chat with on the IPF Facebook page.”
“I still have so much to learn about IPF, and I know the prognosis isn’t good – with the latest medication I’ve managed to reach the 5-year mark, I’m doing my best to keep my head up and carry on.”