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Living with IPF: Colin's story

Colin was diagnosed with idiopathic pulmonary fibrosis (IPF) after he became breathless on a walking holiday in Cornwall.

In this film, Colin talks about how he is living with IPF and how he has been supported by the British Lung Foundation. Read the transcript of this video.

This year, 5,000 people will be diagnosed with IPF in the UK. There is no cure, and just half will live for more than 3 years after their diagnosis.

We’re calling for greater awareness and better quality care for people affected by IPF.

You can make a difference: donate to our IPF appeal

Video transcript

Intro - 00:00 – 00:14

Text – 00:14 – 00:17

Colin first noticed that something was wrong during a walking holiday in Cornwall.

Colin – 00:17 – 00:47

So when I came back to London I went to my GP, and said that I was feeling breathless when I walked up hills, or did anything too physical, and that I had what I thought was a nagging pain in the chest. But I put it down to a lingering chest infection. Anyway, the GP said “I think you should go to the A&E, because I think you’ve got angina.”

Text – 00:47 – 00:55

Colin was sent for several tests and scans.

Eventually he saw a consultant who diagnosed him with IPF.

Colin – 00:55 – 01:15

Then I saw the consultant and he explained it was idiopathic pulmonary fibrosis, after the results of the CT scan and the test… and that it was a progressive condition and that they didn’t have any particular cures for it.

Text – 01:15 – 01:21

About half of people with IPF only live for three years after their diagnosis.

Colin – 00:55 – 01:54

After that I really thought I was… I went into a sort of panic and thought “Oh my goodness, how quickly is this progression going to be? Is it fast, or whatever?”, and they couldn’t really tell me because everybody is different. But as the weeks passed and I got more information from the British Lung Foundation, I realised that it was a question of managing the condition and that the best thing to do was to carry on as normal, which I did.

Text – 01:54 – 02:00

IPF is a build-up of scar tissue that makes the lungs thick and hard.

IPF is incurable and the condition gets progressively worse.

Colin – 02:00 – 02:38

When I was first diagnosed, of course I went on the internet and found the British Lung Foundation, and looking at their site was very informative. And there’s also the helpline, which was very useful because of the conflicting information I got from the GP and the consultant (and the fact that you can only be with the consultant a relatively short time) the nurse was very useful in filling in the details.

Text – 02:38 – 02:45

With the support of the British Lung Foundation, Colin has learnt more about IPF and how to live with his condition.

Colin – 02:45 – 03:21

The great thing is not to dwell on it really, and because I’ve had it now for 2 years I’m sort of- I know how to get round things and organise a trip out for example. And simple things like taking a bottle of water with me, an extra pullover, so you don’t get caught somewhere, on a train station (like I did the other night) where it was just a bit colder than I anticipated. It’s planning really.

03:25 – 03:45

At the back of one’s mind you know that it will progress. One doesn’t know the rate of that progression, and you take a day at a time really. At the moment I feel perfectly well and we keep going.

Outro  03:45– 04:10

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10 February 2015