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How I’ve learned to see the positive side

Andy has a rare interstitial lung disease and has had to come to terms with being less active.

Andy after completing a challenge for the BLF

In 2011, I ran from John O’Groats to Lands’ End to raise money for a leukaemia charity close to my heart. I was plagued by a cough but didn’t give it much thought. After all, I had run more than 1,000 miles in a little over 2 months.

Afterwards, I noticed a dip in my running times. Exercise got a bit harder and I felt tired sooner. I still had my cough and I had some chest infections. A year went by before I told my consultant, at the hospital where I’d had a bone marrow transplant to treat my childhood leukaemia.

I’d had a CT scan before the John O’Groats to Lands End run to check I was fit for enough the challenge, and now I had another.

The difference in a year was immense

The later CT showed a lot of scarring in my right lung and also some in the left one. Lung function tests showed I’d lost about 30 - 40% of my lung capacity. I was told I had a very rare interstitial lung disease called idiopathic pleuroparenchymal fibroelastosis (IPPFE), and that my lungs would continue to scar and my lung capacity would fall. Since then, I’ve taken steroids but I face a very uncertain future. I may become suitable for lung transplant at some point.

The impact on my life is huge

Physically, things I took for granted slowly became more difficult. And I’ve given up competitive football, as I don’t have the breath to sprint. I’ve always loved sport and shared this with friends, so it was hard to accept.

The mental impact on me is the hardest. I lost confidence when I wasn’t able to do things my friends could. And at times I’ve felt angry and isolated. 

Facing an uncertain future is unsettling. My condition is currently stable – a steady rate of scarring – but it could get worse again at any time. A transplant could be 10 years away, it could be in 18 months. That’s a lot to contend with mentally and I’ve always considered myself mentally resilient.

As my condition is so rare, I have to take chest infections and flare-ups as they come, and get urgent advice on what to do each time. Like I said, a scary, frustrating place to be which at times can be very lonely.

Over time I’ve learnt to adapt. It’s not been an easy process, but it started by accepting that what will be will be. It’s a hard shift to make and I still have down days.

I try to focus on what I can do rather than what I can’t

By replacing the fear of the future with enjoying what I can do in the here and now, my life has improved immeasurably. 

I’ve started to do positive things to that will help me self-manage my condition, like exercising within my new limits. I try to run 4 or 5k on the treadmill 2 or 3 times a week at about 80% of my capacity. Finding your ‘limit’ while challenging yourself at the same time isn’t easy! I also find out about other things I can do to improve and talk to other people living with lung conditions on the BLF’s web community.

My top tip is to exercise – however you can

I’d also recommend talking to someone about how you’re feeling. I spoke to people with lung conditions on the online forum, but you could also go along to a BLF support group. You could talk to a friend or a member of your family too – they don’t need to know all about your lung condition. The important thing is that you talk to someone, especially when you’re down. 

I wish I’d known when I was first diagnosed that I could call my respiratory specialist nurse if I was worried. I find mine a great bridge between my GP and consultant, and it’s great to know she’s there if I need her.

The other thing that’s helped me is taking the time to develop an understanding with my GP about my condition. It means I get repeat prescriptions easily and an emergency supply of antibiotics if things flare up without delay.

I also take comfort from knowing I’m not alone. Organisations like the British Lung Foundation are here to help, and I draw great strength from their work. Research gives me hope for the future. And I always remember what my late mum told me: ‘illnesses can take over your body, but they can never ever take over your soul’.

Read our online information on dealing with your mental health, anxiety and depression.


Comments

Just wanted to wish Andy all the best. You are so positive and that is great. It is shame you have had to give up on sport but focussing on what you CAN do is great - I am so pleased that you have got the support that you deserve from the British Lung Foundation.
It is good to see a personal story concerning an Interstitial Lung Disease. Most people have never heard of these and yet there are very many different kinds. I have Hypersensitivity Pneumanitis which may be a more common type of Interstitial Lung Disease,  I had thought my steroids last year was helping me enormously to have the disease beaten, but alas when the doses became very low the inflammation of the lungs started to return and as before, the deterioration was pretty rapid. Fortunately I did something about that reasonably quickly this time and the steroid doses were taken quickly taken to an appropriate level. Also a GP's referral was this time made to a tertiary hospital and centre of excellence where I have just had my first appointment. An impressive experience and there will be a further appointment in 6 weeks time and I know I will now be carefully monitored whatever is decided  will be done to control the disease.
I would like to see this short article put out on other web sites . by only being on B.Lung Foundation website you are only talking to the converted !! If it could be seen on a t.v. channel during adverts it would have a huge impact as the subject was a very fit and able person, including raising money for other charities. About 80% of people have never heard of COPD - let alone other respiratory diseases. Until they know about people like Andy much needed research / money / legislation will not happen.
Dear Andy, thank you so much for sharing your inspirational story. Your insightful advice and tips are very reassuring, particularly regarding exercise. I was recently diagnosed with PPFE after several years of symptoms. I’ve now signed up to do the Big 100 challenge. Many thanks again and best wishes, Anna

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10 May 2019