Fighting back against IPF

Graham had never heard of IPF before he was diagnosed.

I was diagnosed with IPF in October 2011, shortly after my retirement. However, I believe I've had IPF for longer than that. I had symptoms way before then.

I was getting breathless at work - but at the time I thought it might be because I’d put on weight after I quit smoking. I stopped smoking in 2005 as a Christmas present to my wife. She’s not easy to get gifts for, so I asked her what she wanted for Christmas and she said she wanted me to give up. On Christmas morning 2005 I had my last smoke. I packed everything up into a box: my pipe, tobacco, everything, and I wrote a note saying ‘this box contains a wish granted and a promise I will try very hard to keep’.

I haven’t smoked since. But my breathlessness continued and I began to think that there had to be more to it. I visited my GP, who listened to my chest and told me I had a chest infection. For the next few years I was pumped with antibiotics but to no avail.

Eventually, I was sent to Royal Hospital Derby and given a CT scan. The specialist who reviewed the scan said that if he hadn't known I was an ex-smoker, he would never have guessed, as there was little sign of the smoking related damage.

IPF

It was then that I was told I have IPF. And that was it. I'd never heard of IPF before. I was given no information. I avoided going on the internet to find out more but eventually did and what I found shocked me. The prognosis was not good and there was very little treatment available.

So... what to do? Sit back and wait for the bloke with the scythe or fight back in every way that I can, no matter how small and seemingly insignificant each tiny step appears to be? Fighting is good, it gives you focus. I was referred to pulmonary rehabilitation for six weeks.

Initially, I did the classes because they were part of the process of getting on the lung transplant list (I’d been told I was too overweight to be put on the list). However, the classes really helped me and I've been to the gym every week since. My consultant told me my BMI was too high so on my birthday, about two years ago, I joined a weight loss programme and lost three stone.

I can walk for 30 minutes at the gym now. Of course, I do it with full oxygen - but I can do it. Despite bringing my BMI down to a healthy level and remaining as fit as I can, I now can't get on the transplant list as I'm considered too old. But I won’t give up.

Making changes

I still try to do everything I did before. Obviously there are changes. If I need to go upstairs I’ll sit and think ‘what else do I need to do up there today’ because really, I can only climb up the stairs once. Everything takes longer now. If I want to mow the lawn, it’s going to take me over 4 hours. I need to stop and start a few times, but I’ll finish it.

The one thing that I really can’t ever do again is karate. I was two belts away from a black belt and now I know I will never achieve that. At the end of the day, you have to work within the parameters of what your body can do.

I do my exercises, I look after myself - and it helps. If I need to get around, but think it might be too difficult, I’ll use my electronic buggy. I can go around, see my mates, go on cruises and have a social life. Sometimes people stare at me and I know they’re thinking, ‘what’s he doing in a buggy - he’s fine’, but they can’t see my insides.

My GP didn’t know what to listen for, as not many people know about IPF. When I first volunteered to help out as a ‘study patient’ for medical students, none would ever get my diagnosis right. At the moment maybe one group out of five will recognise my symptoms and diagnose me correctly. That’s an improvement.

World IPF Week

That’s why this year I’m supporting the BLF during World IPF Week – to help raise awareness about this nasty disease. Knowledge is power, and we desperately need research to find out more about IPF. That way, we can help everyone affected by IPF. If there’s anything I can do to help people in my situation, then bring it on I say.