My dad’s battle with idiopathic pulmonary fibrosis

Kellie’s dad passed away from IPF. Here, she shares his story and how she’s raising awareness of the condition.

Kellie running the Brighton marathon

In 2015 my dad was diagnosed with IPF (idiopathic pulmonary fibrosis). At the time, we didn’t feel the full force of what this meant. It was scary to think that my dad had only possibly 5 years to live, but because he hadn’t changed much (apart from a consistent cough), the terminal diagnosis hadn’t quite hit home.

The initial stages were looking into treatment options and working out the possibility of a lung transplant. Luckily for us, dad was prescribed one of the only drugs available that would help slow down the condition’s progression. The option of a lung transplant would be a long journey - we just didn’t know it yet.

Adjusting to life with a lung condition

Dad’s condition was getting worse. Going upstairs would leave him breathless, and the decision was made to start oxygen therapy. His use of oxygen tanks was a big adjustment at first, and at times was difficult to see. But we knew he needed it to continue being as active as possible. Dad was an extremely active man who always loved walking, and in his younger years would run long distances and play football.

Meanwhile, the journey to get on a lung transplant list was difficult. He was rejected from one hospital because there was too high risk of failure, due to a blockage in one of his arteries. Dad eventually had a stent fitted in his heart, making him eligible for the transplant list at another hospital.

Our journey on the lung transplant list

Dad was on the list for a while. He attended pulmonary rehabilitation classes which were great in helping him keep his strength up. Despite this, he lost a rapid amount of weight which was concerning to the transplant specialists. He needed to gain weight to be re-admitted to the list, and thankfully was only off it for around a week.

In early 2018, dad’s mobility changed quite abruptly. He relied on wheelchairs, mobility scooters and a constant supply of oxygen. Our hopes were set on a lung transplant. He eventually required a hospital bed, which was kept in what used to be our dining room. While this was a big adjustment, it became the new norm. 

In November, we had our first and only phone call with a potential lung donor match. But by the time my sister and I arrived at the hospital, we got the devastating news that the matched lungs were unresponsive. This was a huge blow, and it really did feel like our last chance.

It was a huge blow, and it really felt like this had been our last chance.

Just a few months later, we found out that it really had been our last chance. Dad’s condition had developed to a stage where he was too weak to survive a lung transplant. We were crushed.

It didn’t feel like we were facing the end

In March 2019, dad got pneumonia. With such a serious lung condition already, this was potentially fatal. He was admitted to hospital and after a week of treatment, seemed chirpier than he’d been for a very long time. It was refreshing to see. He was discharged and happy to be home, but then everything started to go downhill. He was ill for a few weeks and being inactive just made him weaker and weaker.

It didn’t feel like we were facing the end. We’d been through so many ups and downs, there was an element of feeling like he’d just shake it off and be back at the brandy and cokes in no time!

I think deep down we all knew what was happening.  Everyone in the family had different ways of dealing with it. Even after being told he was too weak to move, I didn’t comprehend how quickly he would be gone from that point.

We lost our lovely dad to the cruel and unforgiving disease that is IPF.

On 6 April 2019 we got the call from mum that dad was asleep, and he may not be able to wake up. It was the most distressing time of our lives. On 7 April 2019, we lost our lovely dad to the cruel and unforgiving disease that is IPF. He was only 65.

With each pitfall, dad continued to do what he loved with a smile on his face

There’s so much to say about the medical side of things, but that wasn’t all that consumed our lives for the past 4 years. We’ve had some fantastic time together as a family. Mum and dad enjoyed a trip to the Cotswolds, and they went to Portugal! Dad even arranged a family holiday to the Isle of Wight, which was so important and special to all of us. These, along with the many happy years before his illness, will be memories to hold onto forever.

With everything that has happened, myself and my family feel it’s so important to raise awareness and money for the British Lung Foundation. I’m running the Royal Parks half marathon this October in memory of my dad, and it’s his overwhelming determination that now keeps me motivated. In 2016 I ran my first Royal Parks half and in 2018 I ran the Brighton Marathon, all for dad. I will never stop running for him and for everyone else with a lung condition.

Throughout dad’s journey with IPF, he remained unbelievably positive. If it wasn’t for his inspiring attitude, we wouldn’t have remained so strong. He was always a joker and never stopped seeing the funny side of life. Our family have never and will never know anybody as strong as him and we are so lucky to have had him.


Comments

I lost my lovely husband Dave to this horrible disease from diagnosis to his death was just six months he was deemed to old at 72 for a transplant so anything that raises money for research into IPF or any other lung disease is welcomed because if you can’t breathe you can’t keep living keep on running and maybe one day we will have a cure.

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13 June 2019