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Staying positive with IPF

Josie’s dad passed away from idiopathic pulmonary fibrosis (IPF) in 2019. She tells us how keeping active helped him to stay positive and how the British Lung Foundation helped her understand his condition better.

Dad told us about his lung condition in 2015. I remember the conversation vividly; we were in Spain driving to the apartment on our first family holiday since my daughter, his first grandchild, had been born. He’d finally being diagnosed following a persistent cough for a year or so.

Josie's dad

The search for a diagnosis

Dad had seen his doctor a few times as a result of a tickly cough that wouldn’t shift. After seeing an advert on the TV for lung cancer and the importance of getting a cough checked out, he went back to his GP surgery.

Eventually more in-depth tests were done and they discovered that he had idiopathic pulmonary fibrosis (IPF). I wonder if he would have been diagnosed sooner if more people knew about the disease.

He was very relaxed about it at the time, but said even then, that this would probably be “the thing that would kill him”.

Keeping active helped him stay positive

Dad willingly took part in the exercise programmes offered as part of his treatment plan and seemed to really enjoy these. Not only was he keeping active, they helped him stay positive and meet others living with similar conditions.

He learnt practical advice from people at the groups, like how to manage oxygen therapy when you are going on holiday. As dad liked to travel regularly, this was useful information!

Trialing other treatments

“I am so proud of how my dad coped with his condition and contributed to research, which will hopefully help fight lung disease in the future”

Dad was always up for trying something new and was keen to fight the disease as much as possible, so he volunteered to participate in clinical trials. He tried drugs that slowed the progression of the disease and had a positive experience – they managed to limit the progression of his condition for months and months.

However, after several stomach ulcers he had to be taken off piferdene and moved to nintendab. I am so proud of how my dad coped with his condition and contributed to research, which will hopefully help fight lung disease in the future.

He was never considered for a lung transplant, as far as I know. This did begin to bother him in the month or so before his passing as his condition progressed and the treatment options reduced.

Once he knew that his oxygen use would be permanent, and that he wouldn’t be considered for a transplant, I believe he became acutely aware of the rapid progression of the disease after managing to keep it at bay for so long.

Josie as a child with her dad

Planning ahead is important for everyone

I had done my research so I understood how long people tend to live following a diagnosis of IPF. Dad knew this too through others he’d known with the condition.

I wasn’t sure Dad ever wanted to talk about planning ahead or about his condition, so I researched it myself. Finding the British Lung Foundation website was so helpful. It helped me learn as much as I could without having to ask my dad.

I definitely think it’s important to involve the family in advance care planning which we never got a chance to do. At one of the later appointments with his doctor, they asked my mum to go along as well, maybe with the aim of talking about planning ahead, but they never did. I think this is an important stage for everyone involved and it shouldn’t be missed out.

Raising money in his memory

I am now committed to ensuring the BLF can fund research and improve medical options for IPF in my wonderful dad’s memory through his breath of life fund. It’s so important that not only those with a lung condition know more about their condition, but also family and friends are aware of how best to help their loved one. The BLF is at the forefront of this, with me supporting them the whole way!

Join Josie in supporting our IPF research today.

Do you have a story to tell? It could be about your lung condition, a friend or relative you know who lives with one, or how caring for them impacts your life. We'd love to hear what you've got to say!

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12 November 2019