Walking 186 miles for our friend Steve

Philip and his wife wanted to do more when their friend revealed he had pulmonary fibrosis.

Judith, Steve and me

Around 8 years ago, my friend Steve was diagnosed with idiopathic pulmonary fibrosis. Understandably, he didn’t want to tell anyone about it. He kept it under wraps until just a few months ago.

I first found out when I got an email from a mutual colleague. Steve could no longer keep his illness a secret – and he had a simple wish that we start an email chain.

He instructed that we should tell 10 people about pulmonary fibrosis, and the work that the British Lung Foundation does. And then we should ask those 10 people do to the same.

This sounded like a great idea – but I wanted to do more.

Remarkably brave

I first met Steve when we were working together on international development in India, Bangladesh and Pakistan. Just over 10 years ago we wrote a handbook together, which was widely used by aid workers.

His approach to his work has always been pragmatic and down-to-earth. He always seems to focus on the positives. He has a very cheery outlook on life – a really great guy.

When I first found out about his illness, he was very philosophical about things. He put on a very brave face. His journey must have been a real rollercoaster for him and his family. He’s been remarkably brave.

My brother-in-law died from a different lung disease, called mesothelioma, 6 years ago. We felt robbed, angry and sad. It was very unfair. We still miss him. And last year another colleague lost his life as his lungs slowly failed.

Because of what I know about lung problems, I felt full of dread for Steve and his family when I first found out that Steve had a lung disease.

But I didn’t know anything about pulmonary fibrosis. We quickly looked it up on the internet, and realised just how awful it is. The well-balanced British Lung Foundation website is the most useful source of IPF information.

It’s a horrible disease. People with pulmonary fibrosis have scarred lung tissue. This makes the lungs increasingly stiff, and as this happens they struggle to take in oxygen. Most people die within 3-4 years.

I wanted to do more

As a family, we’d been visiting Pembrokeshire for many years. We also knew that Steve and his family had done likewise. We’d occasionally swapped notes of good places to visit. Suddenly, we felt that we should somehow share our love of the area.

My wife and I decided to undertake the Pembrokeshire coastal footbath. 186 miles of the breathtaking coastal scenery - all very simple really!

Steve said he was over the moon when he found out. He’d received many wonderful messages from friends, and was delighted that we wanted to do something positive. He suggested we should donate any money we raise to the British Lung Foundation, to support people like him.

Between planning and actually doing the walk, Steve was lucky enough to get a lung transplant. That meant we could set out with a lot more sense of purpose and enjoyment – there was now real hope. In his own words he’s one of the really lucky ones. Sadly most people with IPF never get the opportunity for such treatment.

A great challenge

The walk was tough at times – there were lots of ups and downs. We began on a wet and (very) misty day. We did wonder what we’d let ourselves in for.

Overall though, we were really lucky with the weather. Our cagoules stayed in our rucksack for pretty much the whole 2 weeks. We had a couple of really hot, and rather humid, days which were tough.

It was really great.

Steve sent us lots of text messages along the route. Walking along the cliff tops at Marloes Sands became very special. He sent us a photo of the same spot, painted by his wife Hilary. It’s a super picture, which really captures the magic of the place. If you ever get a chance to visit, do so – it’s such an inspiring place.

We’d like to say a big thanks to Rosie and Ruth from the British Lung Foundation. They sent us some t-shirts and lots of support. We felt good wearing them, and they prompted lots of comments from other walkers we passed.

We met many people who had never heard of pulmonary fibrosis. Amazingly, however, we met 2 people who knew others who’d had a lung transplant. There are only 160 carried out every year in the UK, so the chances of that happening were very slim.

We’d also like to thank everyone who has sponsored us – we really appreciate it.

Feeling inspired? Take a look at the challenges you could set yourself this year.


Comments

Dear Phillip, I have read your heart warming story and really would like to take this opportunity to wish you, your wife and your great friend Steve all the very best.  Sending you all love and light from South Wales. Lisa

Add new comment

CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
2 September 2016