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20 January 2020

IPF took my mother away

Sally lost her mother, Barbara, to IPF (idiopathic pulmonary fibrosis). She tells their story of living with a lung condition. 

Sally with the mother and daughter

The simplest things became significant. Easy tasks which could be carried out in a breath suddenly became a challenge.

Previously, a pair of trousers, when worn by mum, would have had little chance to stand still. Now the trousers hung idly over a chair waiting to be hemmed. It was a task mum would normally carry out in an instant, yet it became one of many jobs left untouched.

From mum’s point of view, her determination and willpower were there. The trouser hemming would be a task she would fulfil when she had more energy. But that energy and determination gradually diminished, eroded by a condition we'd never heard of.

Discovering mum's condition 

Feeling breathless while walking up a sloping pathway – a route she'd walked many times before – was mum’s first prompt to seek medical advice. Investigations revealed slight scarring on mum’s lung, which was the start of IPF.

IPF is a lung condition that scars your lungs and reduces the efficiency of your breathing.

Treatment started to stabilise the disease but the damage had already been done. The combination of IPF with mum’s rheumatoid arthritis seemed to complicate the situation even more.

During those early years, we enjoyed family outings, made memories and worked as much as we could within mum’s increasing limitations.

Mum tried different treatments, she was even put on the list for a lung transplant, but as her condition deteriorated she became too ill to undergo a transplant operation.

The true devastation of IPF

While we were fully aware that we were dealing with a life-limiting disease, it's only through close personal experience that you comprehend the true devastation of IPF.

IPF robbed mum of her ability to even hold a conversation. As it progressed, it also prevented her from carrying out the most simple of everyday tasks we all take for granted.

Her appetite waned but we were determined she would pile on the pounds she needed to for the sake of her health. You can imagine our dismay when even the Russian slices I began buying in bulk didn’t seem to have any impact on her weight.

However, it was explained to us that the effort of breathing was actually burning off the calories mum was so desperate to consume.

Yet, despite the inevitable catch-22, mum did the best she could to stay healthy. She even attended a support group where she met others with similar conditions. 

Things took a turn for the worse

While the arrival of mum’s portable oxygen cylinder brought home the reality of the lifeline she was now having to rely on, it was the installation of the oxygen machine at home that signalled a turn for the worse.

Still, mum was of a generation who were stoic. She accepted her situation almost matter-of-factly. She didn’t moan, she never once asked ‘why me?’

I never once saw her cry – she dealt with the circumstances with such dignity. She inspired me with her courage and determination to fight on. From the moment of her diagnosis I said we were in this together and we were; this wasn’t just mum’s battle, it was mine too. I loved her too much to let IPF take her away.

But, gradually, it did. 

My mum wasn’t just my mum, she was my best friend and seeing your loved one in that situation is beyond heart-breaking. It's four years since mum passed away and I'm still struggling to accept she is no longer here. I will never forgive IPF.

We need to support IPF research 

Although mum was a private person, she would have wanted to raise awareness of IPF in the hope that improvements in research and treatments would help others.

We’ll never truly know what caused mum’s IPF, but what I do know is it took away one of the most precious things in my life and robbed my daughter of her grandma who she adored.

Our loss, and that of the many other families in similar situations, is why we need to delve deeper into the cause of IPF. That's the only way better treatments are going to become available and improve the quality of life for patients.

We need a greater understanding of this disease so that one day we may be able to eradicate it once and for all.

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25 October 2019