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My IPF and breathlessness

Ann has IPF. She shares how breathlessness has affected her life and how she’s learnt to adapt.

I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2014. My husband Peter has chronic obstructive pulmonary disease (COPD) and I became his carer in 2010. We learnt how to manage, sharing tasks, and I gradually took over as he became less able.

Learning how to adapt

We adapted to a slower pace of life. Changes were made to our home to make it easier for us both to move around. We got used to a different social life, as I was unable to leave Peter for more than 2 hours at a time. I’m on a drug called nintedanib which I’ve been on for 4 years. I had to have the dose lowered to reduce side effects. We’re both also on long-term oxygen therapy.

I get breathless doing everyday things like making a cup of tea. It can be quite isolating, but you’ve got to keep going and learn how to adapt to your new norm. 

Breathlessness is really difficult to describe. I can only liken it to feeling like you’re under water and want to breathe, but you can’t. I’ve had to learn techniques to help me manage my breathlessness. What works best for me is relaxing. I close my eyes, sit with my palms facing upwards and just concentrate on my breathing.

Getting the right support is crucial

Unfortunately, where we live there’s no IPF support, so we joined a general respiratory group. But we had to stop going as it became difficult to travel. Peter has had personal carers for over a year now, and I’ve just started getting personal care too. We have 4 visits a day: breakfast and wash, lunch, tea and bedtime. Carers also help us out with our shopping. This extra support is vital for us as we’re now unable to travel.

Looking to the future when you have a long-term condition

It’s difficult not knowing what the next day will bring. To anyone who’s just been diagnosed with IPF, or another long-term lung condition, I’d say live life to the full and take all the help you can get.

It can be difficult to talk to your family and friends about what you’re going through, but it’s important to make sure they understand what’s happening and how you’re feeling. 

Find out more about IPF week 2020

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2 September 2019