It's hard to believe the photo below was taken 13 days prior to my dad falling very unwell. A month later he sadly passed away on 22 August 2022, following a short diagnosis of Idiopathic Pulmonary Fibrosis.
My dad, James, was kind, caring and mischievous. He loved his animals, his garden, painting, and most of all his family. His family was his life. Being physically impaired meant that Dad couldn’t do physical activities with us. Instead, he’d make puppet shows, play toys with us, or draw for hours. We always told him off for falling over in the garden and he would blame his ‘naughty gnomes.’ He wasn’t given the best health, but he always made the most of life where he could. He adored his grandkids, they could ‘do no wrong’.
It can feel all very sudden when explained that way. However, looking back at Dad’s symptoms, they started 4 years prior. In October 2019 Dad had a chest infection, but this one 'felt different'. Luckily, he recovered but was left with a continuous dry cough. In January 2020 Dad had another chest infection, but he couldn't quite recover from it, and it wasn't until March 2020 that he got any relief from his symptoms. This is where it all began. The GP decided that Dad required a respiratory specialist to investigate the reoccurrence in chest infections and the symptoms they left him with.
Unfortunately, COVID-19 hit England and lockdown delayed Dad being seen by a specialist. Dad did quite well during lockdown, he shielded with my Mum as she's clinically vulnerable. He still had a persistent cough and began losing his breath a little when pottering around. My Dad’s mobility wasn't great due to spinal operations.
In September 2020 the GP finally agreed to complete the referral to a respiratory specialist and Dad was seen in November that year. Investigations found that he had COPD. The respiratory specialist asked to review Dad in 6 months with repeat investigations to compare to. In that time, Dad’s symptoms started to decline, he became slightly more breathless, and had two more chest infections. In May 2021 the respiratory specialist requested CT scans and further investigations whilst seeking support from Royal Papworth Hospital. It was strange, as Dad’s observations all pointed towards him being clinically stable, however the symptoms he was displaying didn't match up with the results of the investigations. The consultants said it was like a puzzle that needs all the pieces to be together to make the full picture.
Dad was seen at Royal Papworth Hospital in November 2021. He was also under the rheumatoid clinic, as he experienced dry mouth and dry eye. He was seen by the ENT clinic as every time he had a flare up or infection, he would lose his voice. He reported:
It was either talk or breath
Strangely, his oxygen stats all read as being normal. ENT confirmed no issues with his vocal cords and the rheumatoid clinic discharged him without him even knowing. It seemed like everybody had 'given up' as it just didn't 'make sense'.
Dad was later seen at Papworth in March 2022 and again in May 2022. The last visit seemed more promising, his consultant noted a decline in his lung function tests and that his condition was complex as it could be showing symptoms before presenting itself. Again, nobody would commit to telling us what they thought it might be. The consultant said that she would discuss the plan with her wider team and get back to him in a month’s time.
During this time, I saw my dad struggling with tasks like walking to the kitchen and getting out of breath or having a shower and needing to rest straightaway.
On 9 July 2022, we celebrated my sister’s wedding which is when these pictures were taken.
On 20 July 2022, my dad went into Royal Papworth Hospital for a lung biopsy. This was the last piece of the puzzle. He was finally going to get his diagnosis, so he could learn to live with it. The next day he was given treatment for a chest infection and discharged to go home. But the following day he became extremely poorly, we called the ambulance service three times, and on the last call my dad was unresponsive. The ambulance crew were there within 15 minutes of that last call. Dad was given oxygen straight away and within an hour of getting him stable he was talking to us and being his mischievous self again. He was taken into hospital and that's when the real roller-coaster kicked in.
Dad was taken to ICU and he got better, moved onto a ward where they weaned him off oxygen. Unfortunately, he caught another chest infection and was moved to ICU again, this was two weeks prior to his death. Dad was given one last intense treatment to help him get back home. After one week in ICU, Dad was moved back onto a ward. However, this time he was told he was at a palliative stage and that he would be coming home with oxygen, equipment, and care.
The Saturday before he was meant to come home, we were told the dreaded news that he was at end of life and only had days to live. Dad passed away in hospital on the Monday surrounded by family. During the time he knew he was dying he was able to inform us of all his wishes. He never showed that he was scared and always had a smile on his face. He even got my husband one last time, my husband was stroking what he thought was his leg, but it was his catheter. It did make my dad laugh and all of us too.
It wasn't until two weeks prior to his death that we were told he had pulmonary fibrosis. We didn’t know a lot about the diagnosis and the prognosis of PF at the time, but since Dad’s death we have done lots of research to understand more about this devastating condition. This is how I first came across Action for Pulmonary Fibrosis. As soon as I found this charity, I vocalised it to my family, friends and colleagues. I felt it gave so much more information than we had explained to us by medical staff and shared the life experiences of others living with it. Looking back at Dad’s life its clear he shared the same symptoms as many others with PF.
Dad was a great believer in helping others and we knew he’d want his journey shared to help others identify their symptoms to hopefully get quicker treatment and slow down this horrible disease.
As a family, so far, we have raised £936.88 for APF. My brother is running a half marathon on 5 March 2023 with all funds going to APF and as a family we will continue to raise money every year. We will continue with our efforts to raise funds in the hope that others won’t have to go through the same journey we did. It’s heart-breaking.