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.
Kellie my story is similar to yours, having lost my dad age 62 to this disease not quite 2 years after his diagnosis. I now also fundraise for BLF and share info as much as possible to raise awareness, I wish there was more I could do.
A very similar story here. Lost my dad last year (2018) aged just 56.  The end was so quick. Like Kellie, we’d been through so many ups and downs and scares, I don’t think any of us were ready for it to actually be the end. I miss my dad so much. Our family are also supporting the BLF in the hopes of a cure one day for this awful disease. 
Hi Kellie - This resonates so much with what we went through, and are still going through. My wife Seema, then aged 51 was diagnosed with IPF in 2011. She passed away in March 2015. She was on the transplant list for a year but no match. I hope to spend my time, once retired, raising money and awareness. I regularly donate to BLF. Let me know if I can help in any way. Ravi
Ahhh Kellie, I haven’t really got the words but reading this has brought back so many memories of what I went through with mum who we sadly lost a year ago to IPF. We have a v similar story but you’ve written it beautifully. Sending you my love as I know the heartbreak this disease causes. X
My husband died in May 2019 after being told in March 2017 he had this vile cruel disease and they said he had 6months to 2 years . He wasn’t ill enough at the start of it all for the tablets that would make a difference and then he was to Ill . He was too old at 62 to be out on list lung transplant journey . Then he developed heart failure and then had sepis , he did get better and get home but it had taken its toll on him and after many more admissions to hospital , this vile cruel illness took him on May 30th at 4.30pm ...  He was the bravest strongest man I have ever ever known , the only thing that makes it all bearable is the fact he isn’t struggling anymore .... and it’s only when they have passed away do you realise how very brave they were ... no more oxygen no more blood tests no more trying to eat and drink when you really can’t take any more no more sleeping and waking up panicking no more being scared .... no more .... god bless all of you going through this nasty illness , I hope things improve and a treatment gets better and people start to survive this vileness .... xxx 
This is the one piece of writing I can really relate to. I know that everybody’s journey with slightly different and dealt with in the sufferers own way but this really seems so close to home. Dad was 68 and was diagnosed in 2015. The way your raising awareness of this horrible condition is fantastic I take my hat off to you. 
Thank you for sharing your story about your Dad.  I am searching for info because my Dad diagnosed in January of 2018 with advanced IPF is in a rapid decline. I feel we are near the end.  We live in the States but my parents are English and I myself moved here at 10.  My Dad is still very British and reading your story although sad was of great comfort.  I hope you are doing as well as possible  considering your fairly recent loss. I am 62, 65 is much too young to pass from this horrible disease.  My thoughts are with you and your family. 
My Dad died on the 14 October 2019 aged 71, he too had IPF. He went into Colchester Hospital and was diagnosed with pneumonia, he was in for just over a week. He was discharged 12th and by the 14th was back in , he passed in resus at about 19:35 although had a DNF . I didn't make it in time to see his pass. We said goodbye to him yesterday , me and my 4 brothers carried him. It was so hard to see the illness take him , he was diagnosed as terminal in 2014 . I was never prepared for how it ended and will miss my Dad forever being only 30 I find this all very overwhelming . I hope one day people can be cured of this horrible disease . My dad was on a nasty cocktail of over 20 tablets a day .
I just lost my father to this terrible illnesses as well. He was diagnosed in 2014 and he just passed a week ago. He was about to turn 75 and was denied the chance of a transplant a few years ago because of his age and other complications. We are devastated and would like to raise awareness, too.
Thank you for sharing. My dad has IPF and has been living with it for 9 years. He was also turned down for a lung transplant. We cherish every day because we don’t know when God will call him home. It is awesome that you are running to bring awareness to this disease. I pray for all who suffer or who have suffered from IPF.

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13 June 2019