I have been living with IPF for eight years

Peter, 70, a retired credit manager who lives in Luton, shares the story of how he was diagnosed with idiopathic pulmonary fibrosis.

In 2010, I took an early retirement. At the time, I was in a lot of pain because of my hip – I had a hip replacement in 2012. A year after my surgery, in June, I developed a cough and by November that year, I was diagnosed with idiopathic pulmonary fibrosis (IPF) by a specialist consultant.

The cough I had was persistent and just seemed to be getting worse. So much so, that I decided to go to the doctor. When I went for my appointment, I was told to ‘Give it time, there’s nothing we can give you for a cough, so just give it time’. But the cough would not go away, it was very persistent and turned into a chronic cough.

We didn’t realise the seriousness of the condition

I ruptured a muscle in my abdomen from coughing and had bruising from the front of my body all the way around to the back. It was very painful to move about and it was excruciating when I coughed. Because of these symptoms, I went back to the doctor.

This time, the doctor sent me for a chest X-ray because they hadn’t seen symptoms like this before. I went for an X-ray at the local hospital. A couple of days later I received a phone call from my doctor saying the results showed I needed some further investigations, and I was to be referred on to a specialist.

I went to see the specialist, and he took one look at the chest X-ray and said, ‘we need to do a CT scan.’  It took a couple of months for the appointment to come through for the scan and strangely enough, because I had started to feel better, I felt like I was just going through the motions and wanted to get it over and done with.

But after my CT scan, I had a letter asking me to go in to see the specialist to discuss the results. I remember that appointment well. The specialist had a laptop and he looked at my CT scan and looked at me and said, ‘Oh yes, it’s idiopathic pulmonary fibrosis, it’s a progressive lung disease that has no cure.’  I looked him in the eyes and said with utter shock, ‘What?’ He must have seen that I didn’t know what he meant, so he said, ‘Let me write it down for you.’ He rummaged on his desk and found a bit of scrap paper. On this he wrote, idiopathic pulmonary fibrosis, and handed it to me. He said, ‘Look it up on the internet and we’ll see you in 6 months-time for a lung function test’. That was the end of the appointment.

My wife was with me at this appointment. We both came out thinking, okay, that’s that. It’s a condition which I have to live with and maybe there is a drug or two that I can take to keep it in order, and I carry on as I am, no problem. We didn’t really realise the seriousness of the condition. When we came home, I discreetly went on to the internet and searched for IPF. The first thing I found was information saying I had three years to live. I was stunned, my stomach just hit the floor.

I felt like I was letting my family down

That first week of being diagnosed, I lay awake almost every night in bed and stared at the ceiling. I hadn’t told my wife what I had found, I didn’t want her to worry, and I needed to get my head around it all. My stomach constantly churned and rocked. I had this large nasty thing in front of me and I was trying to make sense of it all. It was a very scary time.

I tried to think of way to deal with it. I thought to myself, it’s no use me burying my head in the sand, I had to meet this head on! I had to think about what I would say to the grandchildren, about what to plan for. I only had three years to live, and I didn’t know what those years would be like for me physically – I felt like I was letting my family down, my wife and I are always there for the kids and grandchildren, we offer respite care for our kids.

As it happened, my wife had discreetly been searching on the internet too, and had found the same information. We both didn’t really discuss it as we were too scared. Luckily, a good friend of ours told us about Pulmonary Fibrosis Trust (PFT).I looked them up and found their email and emailed them and waited. I didn’t have to wait long, at around 1am or 2am that morning my phone pinged next to me in bed. I looked and saw I had a message from them.

I was petrified, I had been thinking about what will this condition bring and all of these questions were buzzing in my mind - How am I going to die?  What sort of funeral do I want?  What’s it going to be like at the end stage?  Will I get some sort of comfort drugs or something to help me through that end bit? When I saw the message, I could not resist reading it straight away.

The message read ‘Well, look, what you’ve read is worst case scenario. The prognosis isn’t necessarily three years.’ They suggested that I go and speak to my GP. That gave me a glimmer of hope and a little light at that tunnel. It helped enormously at the time. I put my phone back on the bedstand and curled up and went to sleep.

I am not alone and scared anymore

I made an appointment with my GP. I needed an explanation, to talk about it and understand it better. When I sat down with my GP and I told her about how I was told about the diagnosis she was absolutely mortified at what had happened. She wrote to the hospital to complain and asked for the specialist to arrange an appointment to explain the diagnosis.

Two weeks later, I received an appointment to see the consultant. My wife and I sat there as the specialist explained IPF and at what stage I was. At that point it was a minor stage and I was told not to worry too much and that the lung function test I was to have in 6 months’ time would flag any deterioration, and in the meantime I could have a lung biopsy to ultimately confirm I had IPF. I said yes, and had a biopsy and the surgeon told me that I didn’t have IPF – I was elated. But a month later, when I went to see the specialist, I was told the results of the lung biopsy showed I had both pulmonary fibrosis and emphysema. I was back to square one and I was terrified.

Luckily, I had found PFT and I went along to one of their events. There I met other people who had IPF and specialists. For once I didn’t feel alone and I could ask lots of questions and understand the condition more. I know now that I am stable, and I am monitored for deterioration, and I have a support group to help when things change – I have been living with IPF for eight years and I am not alone and scared anymore.

The Taskforce is calling for rapid implementation of diagnostic hubs across the country as well as the introduction of a clear patient pathway for timely, accurate and complete diagnosis for everyone with breathlessness and other respiratory symptoms.

Early and accurate diagnosis is critical to improve the health and wellbeing of people with lung disease as identifying the disease at the earliest stages offers the best chance to take measures to slow its progression, which could add years to people’s lives and improve their quality of life significantly. Read more about our work to improve diagnosis rates, here.

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7 July 2021