On my bike, I'm just Stephen

Winter can be a real worry if you have a lung condition. Amy Rutland spoke to Stephen Bell about how he will protect himself this winter and how he’s still managing to live his best life, thanks to the support of our Specialist Respiratory Team.

Riding his motorbike, enjoying his garden and spending time with his grandchildren are just some of the ways Stephen Bell enjoys his spare time. It’s something he thought he might not be able to do for very long, after being diagnosed with two long-term lung conditions in his 40s. But thanks to the support of our Specialist Respiratory Team, the 58-year old granddad – who is affectionately known as ‘Jelly Belly’ by his five grandchildren, is not letting his conditions hold him back.

Stephen, who lives in Blean, with his wife Lynne and their Old English Mastiff Mabel, was diagnosed with chronic obstructive pulmonary disease (COPD) and emphysema in 2013. He said: “When I was first diagnosed, it took me a long time to accept that this was going to be my new normal. But I’ve learned so much, thanks to the respiratory team – the GP can tell you everything clinical about your   condition, but the respiratory nurses are angels in disguise.

“They have helped me understand so much about myself and what I can do beyond my illness to live a happy and fulfilling life.”

Stephen was referred to the Pulmonary Rehabilitation Team and east Kent Specialist Respiratory Team for support by his GP. This includes a 12-week programme of weekly sessions, which has activities to help improve fitness levels and education talks to learn more about what lifestyle changes you can make to improve your health.

“Those sessions have been invaluable. The team is really knowledgeable about how to live with the condition, rather than letting it take over your life.

“They have empowered me to own my diagnosis and take control back of my health and mental wellbeing. I don’t think about how much life I have lost because I am ill – instead I think about what I can do to live my best life possible.

“I’m one of those people who likes to know everything I can about something – the team has always been at the end of the phone to answer any question I have. I have learned things I would have never thought about or considered. My health is in the best place it can be at the moment – and that is thanks to them.”

The east Kent Specialist Community Respiratory Team has empowered Stephen to take control of his condition and make sure that wearing oxygen – which he carries around daily – doesn’t hold him back.

He said: “At first, I felt self-conscious about wearing my oxygen, but Sheilagh McCrossan, Helen Gremo and Una Payne made such a difference to help me accept my condition.

“Why would I not wear the thing that helps me live and breathe? They were straight talking – I know how to pace myself and ultimately, live a normal life – as much as possible.”

When the world went into lockdown, Stephen had to be more careful to not get ill – to most people winter can mean a cough or a sneeze, but to Stephen, it is more dangerous than that. This is a worry he still has, although he knows what to do to protect himself as best as possible.

“I’ve had terrible winters in the past – one year I had infection after infection, I was constantly ill for five months. There has even been winters where I have ended up in hospital twice where I was so ill. So, it’s really important to me to be as careful and cautious as I can be.”

Outside of work, Stephen now spends his time enjoying his garden, being Jelly Belly with his grandchildren and out with his friends exploring Kent on his motorbike. Stephen’s face lit up when he spoke about his trips out on the roads with friends.

He said: “One of the highlights of my week is when I can get out on my motorbike. When I’m on my bike I’m just Stephen – I’m not ill or unwell. The bike doesn’t rely on me wearing my oxygen to work. My friends are all a wide-range of people, joined together with a love of bikes, the open road and clean air on your face.”

Stephen is now participating in a clinical trial at the Royal Brompton Hospital in London, which aims to improve his lung capacity by using steam to target affected areas of his lungs, known as Bronchoscopic Thermal Vapor Ablation or BTVA. This is led by Professor Pallav Shah and Dr Justin Garner who Stephen describes as two of the nicest people you will ever meet.

He said: “The treatment I have had on this trial is revolutionary. I have definitely benefitted from the new technology. The Kent team caring about me enough to refer me to the trial is something I can’t thank them enough for.”

Stephen added: “This treatment gives me more years to spend with my family and loved ones I wouldn’t have otherwise had; and I am certain that I wouldn’t have had such a positive reaction to this treatment had it not been for the support, information and strength I built thanks to the pulmonary rehab sessions and respiratory team. I owe them everything.”

Do you have a lung condition? Check out our website for support www.kentcht.nhs.uk/respiratory