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I adapt and stay positive

John has idiopathic pulmonary fibrosis (IPF). He shares how he's learned to adapt and stay positive.

I first mentioned my cough to my GP at my annual health check in 2013. The X-ray came back clear. 
But a year later, another X-ray showed something on my left lung. Lots of tests were inconclusive, but finally the results of a surgical lung biopsy indicated I had IPF.

I was invited to take part in a pulmonary rehabilitation study run by research physios and designed specifically for interstitial lung disease (ILD). It was a great help. I remain convinced exercise is a key way to help preserve my lung function.

To slow down the scarring of my lungs, I was prescribed pirfenidone. Initially I had a lot of side effects: nausea, vomiting, diarrhoea and a skin rash which meant I had to put on SPF50 sun screen whenever I went out in the sun. I also felt very fatigued sometimes and would need to take short breaks during the day. But I tolerated all this as it was slowing the rate of progression of the scarring on my lungs. 

However, in June 2017, test results indicated that the medication wasn’t slowing the scarring as much as was hoped. So I was switched to the only other available and relatively new drug, nintedanib. I was a bit nauseous initially, but I’ve found a good regime and manage my diet, which includes a good meal before taking the tablets.

I notice my condition is progressing

It’s now about 4 years since I had my confirmed diagnosis and I know the condition is progressing. I get more breathless when I do just normal everyday activities. I still work part-time, as this is important to me, but it is becoming more difficult. The commute is over an hour and involves 4 train journeys, but I do my best to pace myself, not to rush anywhere and with my recently acquired wheelable rucksack this has made the journey a good bit easier. Little changes like these can make life easier.

In May 2018 I had a flare-up of my symptoms while in Rome due to a respiratory infection. I was coughing all day and night, and couldn’t sleep. It took about 8 weeks and some pretty strong antibiotics to shift it completely.

I find myself reflecting on what matters most to me and my partner. I remain positive as I can still maintain a good quality of life – it’s so important with a progressive condition. 

So I keep as active as I can. Badminton remains an important passion and I have many other hobbies and interests, I also exercise at home and do yoga.

For a few months, I’ve been using ambulatory oxygen. I had struggled with the concept, as I saw it as a sign my condition was progressing. But now I see it as a way of allowing me to continue to do the things I want to do and as an important safeguard. For example, I’ll use it while I get ready for a busy day. I notice the difference as I get less out of breath. 

My support group is vital 

I’ve set up an ILD support group for people with all types of interstitial lung disease - and their families. I’m very aware that we don’t travel this road alone. Everyone has their own unique story about the impact of IPF on them. 

Groups like ours can be a great way to get psychological support in a friendly and mutually supportive environment. It’s a way for people affected by IPF taking back some control and getting support from others who are genuinely interested to hear how they are.

I know people in the group consider the monthly meetings as vital for them.

I set myself targets

I like to set myself targets, so I count my steps on a Fitbit. I’ll collect my medication rather than get it delivered. I know these targets are unique to me. It’s about a balance: being active without going too far and being unsafe. I use an oximeter to check my oxygen levels to ensure I don’t over push myself.

I know what I’m able to do will change as my condition progresses and so I will continue to adapt to my new ‘norm’.

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12 September 2019