“I can’t thank my CF team enough for how invested they were in my trip” – Joshua’s story

Diagnosis

I was diagnosed with cystic fibrosis when I was twenty eight. I was actually travelling at the time when my condition was becoming clear! 

I was in Thailand training at a kickboxing gym and had persistent chest problems. I had already had tuberculosis a few years before, and had (luckily as it turns out) been attending a bronchiectasis clinic, so it wasn’t entirely unexpected that my lungs were struggling.

I was supposed to be starting a teaching job in Taiwan, but after several impromptu trips to a hospital in Thailand, I was diagnosed with mycobacterium abscessus. That resulted in the trip being cut short, and I  was forced to come back to the UK for a hefty dose of antibiotics. The consultant was deeply suspicious of my picking up a second, fairly persistent chest infection and so had me tested - that was when I was diagnosed with CF.

It was a big life change, but it explained a lot of issues I had. It’s remarkable looking back at family home videos where my dad casually says “I seem to have caught Joshua’s cough.” I’m not sure how long it had been around that they’d named it after me! 

The CF diagnosis also meant a serious rethink about what life and work might look like. I was on treatment for 18 months to clear the infection, but thanks to the support of very caring friends and family, I moved back to live in Edinburgh.

How has your diagnosis changed your life?

It definitely led to a bit of mental reordering! Treatment for M.abscessus was a frustrating combination of boredom and exhaustion. I was struggling to work out what to do. 

I started writing short stories and little bits to keep me entertained, and eventually that morphed into an ambition to become a copywriter. It took a while, but I got there in the end!

It’s a great job which I love, and one which works very well around my CF, so I can still work fulltime. That was about 10 years ago, and was again made possible by the support of a good friend who offered me a chance to work with her own business. This was before the work-from-home movement, but I managed to make it fit. I don’t think I could have worked in an office - it wasn’t flexible enough to suit my CF. 

When it comes to travelling, the biggest change since my diagnosis is the level of planning needed. There’s a lot of thinking about just-in-case or worse case scenarios. You have to be more prepared, and with this also comes a lot more paperwork. Insurance is also a lot more expensive and time consuming to fill out, but specialist companies do cater for CF now. There’s also that strange mental burden of planning for something amazing while having to consider and plan for what might go wrong. 

I’ve also been diagnosed with adrenal insufficiency, which means I need to take steroids every day. It makes things even more complicated. If I don’t take those steroids I could go into adrenal crisis with serious implications. I have an emergency injection kit for that as well. So, alongside everything I need for my CF, I need that too. It’s a lot of lugging around.

Have you always been interested in travelling?

Ever since I was a kid, I’ve been lucky enough to experience a fair bit of travelling. My parents liked to take us to interesting places, with trips to Spain and France in among more far-flung locations such as Kenya and Canada. Those family trips are what inspired my love of travel.

Costs prevented me from doing as much travelling as I wanted to do in early twenties, but I’d been to Hong Kong, and when I got to my mid-20s I realised then was the time to look further. I had intended to go teach abroad, and by happenstance a good friend already abroad was keen to go to the same place! He invited me along for an early part of the holiday training at a kickboxing gym in Thailand, with a few small trips to visit my brother in Hong Kong and a friend in Singapore. This was just before I became unwell and had to come back to Edinburgh. It was a real change. I went from three months of quite intense and stress-free fitness training to being really unwell.

I met my wife through work, but she also shares a passion for travelling with me. We met before I went to Thailand, and were both due to go travelling in different parts of the world. After that, I said we should meet up again, so I went to New Zealand (I’m not sure I was fully aware of how far away it was from Thailand) and we went travelling together for five amazing weeks. The writing was already on the wall for my trip, and I knew I had to go back because my health was deteriorating. However, after a year, she moved back to Edinburgh and we met up again. She’s annoyingly proud of having visited 20 more countries than me!

Despite the medical challenges, I’ve been lucky enough to see a fair bit of the world. I’ve been back to Asia and all over Europe. We went to Italy on our honeymoon, and went to Japan on another second honeymoon(!) In the last few years we have visited the Baltics, Spain, France, Italy and a few other places. There’s so much food to eat!

Tell us about your most recent trip!

Recently, my wife and I went to South America and Antarctica as a celebration of her 40th birthday and my 41st. It was really amazing adventure, and one which felt really empowering and rewarding. When I was diagnosed, I was told the median life expectancy was 41, so it was a celebration of being well enough to travel on that milestone, and how far I’ve come with Kaftrio.

We planned the trip for 18 months, and it was put together with the love and support of so many people. First of all my wife, for somehow putting up with 12 days stuck in a cabin with me. Also my brother who gifted towards the cost, as well as my wife’s parents. The biggest thanks is for my parents for inspiring me, for gifts from my mum and also inheritance from my dad who sadly passed away a few years before. My CF team were also unbelievably helpful with filling out the numerous medical forms, making sure I stayed fit, and generally offering encouragement. 

Aside from the CF, my adrenal insufficiency diagnosis added another challenge. In my first appointment after diagnosis I had to bring up the fact I was planning on going to Antarctica. It’s fair to say it wasn’t what they expected from a first discussion of how to manage my condition. 

The trip began in Buenos Aires where it was 30 degrees. Then we went on to Mendoza for my birthday, and that was amazing and beautiful. We then hopped south to Ushuaia on the southern tip of Argentina to launch for Antarctica, before following up hiking in Patagonia. It was a fairly jarring change in temperatures across the trip, with focus on trying to stay hydrated in the north and stay warm in the south!

The journey to Antarctica was mind-blowing. We were on the ship for 12 days, with roughly two days of travel each way. From a health perspective, that part of the trip was the most worrying - having to readjust my mindset as we travelled further and further away from healthcare. While there was healthcare support on the boat, a hospital was long behind us. 

As we began travelling further away, the waves got bigger. I was nauseous the first night, questioning what kind of stupid decision I’d made! When we woke up, we realised how lucky we had been as the crew were all celebrating the calm crossing. 

When we arrived at Antarctica, every day was packed with activities. There were lectures and talks, and then trips to land or out on small boats every day. There’s always something on, and you start being terrified you’ll miss something incredible like a whale sighting. The first time we saw penguins and icebergs everyone was out trying to get a glimpse, then a few days later you’re surrounded by thousands of them. 

We were very lucky with weather. There were almost too many highlights, but we had killer whales coming right up to our kayaks, penguins as far as the eye can see, and camping on Antarctica under the stars. It was very different from being at home near reliable healthcare. I was way beyond my medical comfort zone, but it was incredibly rewarding. 

I ended the trip feeling really proud of myself, something that speaking to my CF psychologist about afterwards really helped me recognise. 

One thing I reflect on now is how lucky we are to have people who support us to achieve our dreams. It can be tough dealing with the ups and downs with CF, but having this most amazing ‘up’ supported by people who love and care for me is a powerful thing to remember. 

I can’t thank my CF team enough for how invested they were in my trip. I sent them a postcard from Antarctica to let them know I was having a nice time thanks to a lot of their hard work. I’m pretty sure it arrived about three months after we got home, but it’s the thought that counts.