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Living with IPF: Joyce's story

Joyce was finally diagnosed with idiopathic pulmonary fibrosis (IPF) in 2012.

It had taken 4 years to get a diagnosis. After a year on the waiting list, Joyce underwent a lung transplant in January 2014. In this film, Joyce tells her story and talks about how IPF has affected her life and how the lung transplant has made a difference. 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 – 00:16

Text – 00:16 – 00:18

In 2008 Joyce began to notice that she was feeling breathless and tired.

Joyce – 00:18 – 00:43

The things I could naturally do quite easily before, suddenly became more difficult; climbing stairs, (not to a great extent at first, but I would get to the top of the stairs and think ‘Oh that was a bit harder than normal!’) But it was when I couldn’t get things into the washing machine, or to peg them out onto the washing line that I really started to notice a difference in anything that involved bending or stretching, and I kept thinking ‘this isn’t normal, this isn’t natural.’

Text – 00:43 – 00:50

Over the next four years, Joyce made repeated attempts to discover the cause of her symptoms.

Joyce – 00:50 – 01:36

So I kept going back to the GP, and he couldn’t find anything. So he sent me to the local hospital for tests. I spent a whole day in hospital and they couldn’t find anything wrong either, so they sent me home. Eventually in… 2012 (the very beginning of 2012) I went back to the doctor and said ‘I’m still not feeling right, I still can’t breathe, I think it’s a chest infection’, and he said ‘Oh yes I can hear some crackles on your lungs, I’ll refer you to the local hospital, and take it from there.’ So after some further tests, they discovered it was… They gave it name. They said ‘We think it may be IPF, or Pulmonary Fibrosis. We don’t know why.’ So of course it became Idiopathic then, because they couldn’t understand why.

Text – 01:33 – 01:46

IPF is build-up of scar tissue that makes the lungs thick and hard, making breathing difficult.

IPF is incurable and the condition will get progressively worse.

Joyce – 01:46 – 02:04

When I was first diagnosed, the prognosis wasn’t great. You know, you are slowly going to get worse, you won’t get any better. You may get worse very quickly, and you’ve got a life expectancy of two and a half to five years, average three years… and your symptoms will get worse.

Text – 02:04– 02:11

IPF has no cure and as the condition progresses many people find that life becomes a daily struggle.

For a very few people having a lung transplant might be an option, but this is rare.

Joyce – 02:11 – 02:31

I’ve never even considered people having lung transplants; it wasn’t something that came into my daily thoughts. So when you’re given this option; this is your only option or you will probably die. It was quite scary. It was quite horrendous really! And I just kind of went to a state of thinking ‘I can’t believe this is happening.’

Text – 02:31 – 02:37

After a year on the transplant waiting list, Joyce underwent a double lung transplant in January 2014.

Joyce – 02:37 – 03:03

Yeah, having the transplant’s fantastic. When you’re ill, and with this disease, you have to think about every breath. You have to physically make yourself breath in and breath out, and you’re always aware of it. Whereas before when you’re breathing naturally, you just do it. It’s just something that you do. And now I’m back to it just being something that I do. I don’t think about it, I just breathe. And that is such a god send. That is such a fantastic feeling, you know. You’re not having to concentrate on breathing, it’s just happening.

03:09 – 03:42

I’ve got my family, I’ve got my friends. And to me, just that, just that alone is worth it, to go through the whole process, the transplant (I wish it had never happened and I would never wish it on anybody, and you are your own worst enemy, you would never wish this to happen). It’s not a path I would have ever have chosen. But once you are given it, it’s about how you deal with it. And just to be able to say ‘I’m still here, I’ve still got my family and the support and we can still be together every day’ to me, just for that one thing alone it was worth everything, having the transplant.

Outro 03:42 – 04-07

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10 February 2015