Antony and his partner Allison

Antony (pictured with his partner Allison) was diagnosed with IPF in his 50s in 2015. He is a self-employed computer engineer, fixing people’s computers in their homes.  

In light of the Covid-19 pandemic and working closely with his customers, his job is now high risk for him, so his income has stopped. He still has lots of things he wants to do and would like to work as long as possible. At times, Antony has struggled with his mental wellbeing, despite this he is determined to live is life to the full.

In his own words Antony talks about his experiences

"My health had been deteriorating for quite a while running up to my IPF diagnosis in 2015.  I have suffered with Chronic Asthma for all my life, and the stress of running a small business for 35 years had taken its toll on my health, forcing its sale in 2010.  

In early 2014, I had been experiencing severe chest pains. An x-ray revealed honeycombing on my lungs and my doctor could hear crackling. Following a lung biopsy at hospital, my partner and I were initially told that I did not have IPF - we left the hospital feeling relieved.  

Unfortunately,the relief was short-lived.  At my next routine appointment, another doctor informed me that I did have Idiopathic Pulmonary Fibrosis. This came as a massive shock and I left the hospital feeling unhappy and anxious about the future. When I got home, I told Allison, who was distraught; having previously read that the average life expectancy from diagnosis was 3-5 years.

Not long after the diagnosis, we had a home visit from a specialist ILD Nurse who told us more about the condition and what we should expect.

We were stunned at being told to make the most of the next couple of years and to get my affairs in order.

Receiving a diagnosis like this, had a significant effect on my wellbeing, as I am sure it does with everyone.  It has completely turned my life and future plans upside down. When asked about IPF, few people have heard of it, including some doctors and nurses. For many, cancer is the biggest worry, even though IPF has a poorer outcome in some cases.

For those recently diagnosed or living with a life-limiting condition, the Covid-19 lockdown and ensuing isolation has been very difficult, the thought of potentially spending months apart from family and friends is so unfair.  

One of the main worries with IPF is the unknown. When first diagnosed you are told about the treatments, the side-effects, Pulmonary Rehab and its benefits, and possible lifestyle changes. I have met people who have coped with this disease for many years and some who are suffering after only a short time. It is the unknown.  

When I was first diagnosed, we made significant lifestyle changes, we downsized our house in preparation and immediately booked all the holidays we could.

I now only work part time, which enables me to work around the many hospital appointments. Allison accompanies me on most appointments for moral support and to listen to the detail.

It’s important to raise awareness of this disease which has no known cure and affects people in different ways. Joining a support group enables you to meet with other people going through the same thing. Sharing experiences, making friends and gaining knowledge is especially important.

Many people including myself have found the support groups very helpful. To meet people who are suffering in the same way and hear their experiences.  

We have had talks from benefit advisors, doctors, research scientists, specialist nurses,specialist pharmacists and of course APF.

Our support group is growing all the time. Many of the older members are now using their mobile phone/computer/tablet properly for the first time. They have discovered email, WhatsApp, Facebook and the vast amount of information on the Internet. They are now not so frightened of technology.

The APF website is a very useful tool and resource to find out about help and support for people with IPF.  The support line is great for people who, because of mobility problems are unable to get out or live too far away. Or just to ask a question about their condition.

In my view, you can never have too much information

Six years on from my diagnosis, I feel fortunate that my IPF is relatively stable. I have noticed a reduction in my fitness, I tire more easily, but more importantly, I am still here and try to make the most of every day!"