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Our life with IPF

Maxine is a wife and a carer. She's making as many memories as she can before it's too late. 

Since lung disease came into my life, my whole outlook on the future has changed. 

You see, my husband Ron has idiopathic pulmonary fibrosis (IPF). It’s a lung condition that causes scarring of the lungs. Our lungs are like sponges, but Ron's lungs are turning to stone. There’s no way to stop it and no cure. He was told he had 5 years to live – that was 4 years ago. That’s why the scientific research the BLF is doing is so crucial.

He has a constant fear that something might happen to him.

Ron’s life has changed quite a bit since his IPF. He’s lost his confidence, especially going into situations and places he’s unfamiliar with. He has a constant fear that something might happen to him, like catching a cold or losing his breath. He used to be the life of the party, but now his fatigue and fear is just too overwhelming. 

As a carer it feels scary

I’ve changed too. I’m not only a wife but also a carer now. I have to be strong for Ron. I put us first now as I know we won’t have that time later in life. As a carer, if I'm honest, it feels scary. I know what I’ve got to face, I know what I’ve got to go through. My life’s on hold so Ron can get the most out of his. I spend all my time with him. I know all I’ll have left is memories, so I’m making as many as I can. 

Being positive gets us a lot further. We have to remind ourselves we can still do things, just in a different way. We’ve been busy travelling the world. Ron has a few more countries to visit to complete his bucket list. We’ve also booked a cruise for next year. I hope we get to go on it. 

Lung disease has taken away our future together, our chance to plan for our retirement. We have hit rock bottom but have bounced back for now. We’ve accepted that our life together has to be crammed into a few short years. It feels like we live life on a tightrope, hoping we don’t fall off. We make the most of every minute as we just don’t know how long we have left together. We're supporting the BLF to try and make sure no one else has to go through this. I know they can only do this through the generosity of people's donations.

Someone once asked me what it’s like to have lung disease in your life. It’s like a dark cloud hanging over you.

Someone once asked me what it’s like to have lung disease in your life. It’s like a dark cloud hanging over you. You could plunge into darkness in a blink of an eye. But there’s also a ray of light. There is hope that, thanks to the research funded by the BLF, a cure might be just around the corner. That hope keeps you going.

With research, there's hope

We can end lung disease and the devastation it causes. We've found the research into IPF really interesting. An anti-scarring drug became available, which can't stop the scarring of Ron's lungs, but it can slow it down. So had people not researched this drug, I firmly believe he wouldn't be here now. That's why it's important to fund research into IPF. The BLF has funded 29 research projects into IPF so far, but more needs to be done. That way, we can stop this happening to people like Ron.

Research is the only way we’ll find new treatments and cures for lung disease. And it’s only possible with your support. You can help prevent people going through what Ron and Maxine have. Please fund our research today.

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24 May 2018