Climbing the world's highest mountains for Cystic Fibrosis Trust

My name is Nick, I’m 47 years old so a bit of a dinosaur in CF years! I was diagnosed with CF at 13 after some close calls involving hospital trips and apparently a few types of pneumonia at the same time. Considering the life expectancy at the time used to be 16, I was obviously incredibly lucky.

It was mainly my lungs and my weight which were affected, as I was pancreatic sufficient. I was also lucky to have parents who spent a lot of time making sure myself and one of my sisters took our medications, did physio, had regular check-ups and did all we could to stay well. Importantly for my lungs, they encouraged me to do lots of outdoor sports. We still ski together to this day.

Although doctors kept me relatively stable most of the time, memories of things like waking up gargling blood for the first time will never leave me. I found CF mainly a nuisance in that it was noticeable to other people and incessant coughing isn’t the most attractive trait in dating or the workplace.

CF and the workplace

Having started work in the late 90s, I used to hide my CF in the workplace as I didn’t want to be treated differently and I was worried it would count against me. I worked for a couple of global consultancies where I learnt a lot and got to travel. I’ve been to over 100 countries for both work and pleasure.

I then worked as a director for a global professional body and had some non-exec director roles. It was when I worked for the global professional body that I was more open about CF as the CEO asked why “Nick was coughing all the time”, and then I decided to see if I could get the time off to do Everest, having done the 6^th highest mountain before joining.

To my surprise they actually let me go to Everest three times (due to being there for the world’s two worst Everest disasters, one of which took me out), and not only that but colleagues started to help with fundraising for the Trust. There were bake sales, cyclists doing the height of Everest on Box Hill, events – I was very touched by the culture and how accepting people were.

It was this job that led to me accidentally becoming a CEO when I was 39. I say accidentally as I never looked for it. I was asked to restructure a related organisation on a part time basis which I did, but found I had an aptitude for it, applied at the last minute for the role and in their foolishness or wisdom the board gave it to me.

I think it’s important to go for what you enjoy and want to do in life; you might not always get it but better to live a life with no regrets. I am really lucky in that I enjoy my work and get to work across the world with some top politicians, regulatory leaders and business leaders, to help improve a key part of the financial system.

Growing older with CF

I try not to think too much about growing older with CF, because it would be easy to become worried about things like cancer risk.

In terms of challenges, I find it hard to know whether aches and pains I regularly experience are part of my CF or just normal life getting older.

My philosophy is to try not to spend too much time worrying about these things, as anyone with or without CF could have things go badly at any point. So whilst I do plan for the future I do try to enjoy and make the most out of each day.

My mentality is, if you want to do something just try and do it, or try and figure out a way to do it, people with CF can do more and more, climbing high mountains and scuba diving were never really seen as possibilities before but they can be for some.

I could never have climbed Everest without what I learnt from experiencing other mountains and an obstinate approach to overcoming the difficulties – I had to learn how to cough at high altitude (I previously tore the muscle down the side of my lung). I had to learn how to get fitter than others to compensate for my CF lungs when we’d get to high altitude. I had to learn what to eat to maintain weight in training and altitude (throwing up had been a problem)… Learning from failure can help you succeed.

My challenge for #TeamCF and raising awareness of cystic fibrosis

My latest challenge was to complete the highest summit on each continent! I finished the challenge in December on Vinson in Antarctica and I skied the last degree to the South Pole.

My way of giving back used to be to help with drugs trials from time to time but Ivacaftor in 2013 stopped my ability to participate in the same way but also really helped clear and stabilise my lungs. This is something I will always be thankful for to the Trust, NHS, CFF and Vertex who all played key roles in either researching or getting it provided.

So, I thought I’d try to raise money and profile for CF charities, including #TeamCF and the Trust because I think the more people who understand CF, the more that will be contributed. But to get profile for the charity, I needed to do something a bit outlandish, and what could be more crazy than going into the death-zone to climb Everest?!

My special souvenir from the top of Everest…

When on top of Everest I filled a container I was carrying with snow from the summit, intending at some point to use it in jewellery and sell to raise money for CF. While I still haven’t got to that stage, I did, with the help of Harriet Kelsall jewellery, design an engagement ring which has a small reservoir of water from the summit of Everest beneath a sapphire encircled by small diamonds. I wanted to create something unique and figured my wife carrying around a little bit of the top of Everest on her finger is unique.

Taking on the other seven summits!

This adventure then continued with each of the other seven summits – until Vinson which is quite tricky to get to. Vinson wasn’t too technically challenging but we had to move a lot of our gear on sleds and in backpacks in conditions which were down to around -40 before wind chill.

We had to dig out snow walls in case of storms, carry all of our gear and breathe in increasingly thin air. It was tough going, everyone looks at me and presumes I’m strong but it took a lot more effort for me as most of my team-mates would have had 30% more lung capacity.

I had some kind of infection, and it turns out that ultra-cold air and dodgy lungs don’t go too well together and the coughing felt like pre-Trikafta!

The ski to the North Pole was quite intense, you could have no flesh showing due to frostbite! It was the coldest environment I’d ever been in and disorientating too as everything looked the same: a big white frozen desert, where it felt like we didn’t make progress as the end of each day looked the same as the beginning!

Training for these  involved me carrying a 26kg rucksack and dragging ‘Horace’ my tyre up and down Greenwich Hill for five or six hours at a time. My intention when training was to try and get fitter than anyone else on the trip to help compensate for my CF. The jokes whilst training were entertaining though – “Are you tyred?”; “Do you know you’ve got a tyre behind you?”; “Wouldn’t it be easier to roll it?”; “Where’s the rest of the car?” and comments like “Oh my god have you seen what that guy is doing!”.

My hopes for the future

On a personal level I just want to lead a happy life and hope to do so for as long as possible. On the broader “living with CF” side for everyone, I think we need the following:

1. We have to achieve breakthroughs so that every single person with CF can have effective medication and lead a good quality life
2. We have to focus on what other issues those aging with CF will face and how to deal with them
3. We have to get systems in place in all countries, not just the West, which identify children and adults with CF, diagnose CF issues, and are in a position to prescribe effective medication.

A life unlimited

Living a life unlimited to me means the ability to live a happy life where CF doesn’t stop me doing things, and taking every unusual opportunity that comes my way. In simple terms it should mean allowing people to live whatever life they want whether that’s sitting on the sofa watching TV or going on a crazy adventure – I just so happen to enjoy both of those things.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.

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