Pulmonary arterial hypertension (PAH): Simon’s story

Life before diagnosis

Before I was diagnosed with PAH, I was very fit and healthy. I joined the Marines in 1985 aged 25; the training was intense! To pass out as Royal Marine Commando there were four tests over five days; the final test was a 30 mile march, whilst carrying 22 pound of kit and a rifle over Dartmoor. You had to be mentally tough, which probably helped somewhat when I was diagnosed with pulmonary arterial hypertension (PAH).

It wasn’t until 1998 that I first noticed that something was wrong when on occasion my feet and calves would swell. It happened mainly when I was feeling exhausted; initially I thought it could be gout. I went to see the Medical Officer and his explanation was that I was male, drank, ate red meat and my father had a history of heart problems. I had regular medical tests because of my job, but nothing was picked up. At the time, I wasn’t particularly worried, but looking back it was probably one of the first signs of PAH.

Getting ill and receiving my diagnosis

The next sign was in 2002; I was a Senior Instructor in Commando Training Wing overseeing Recruit training and one day I had to complete a basic fitness test. This entailed completing four pull ups and running 1.5 miles in under 14 minutes. Before I had run 100 metres it felt like I had a sock trapped in my throat – overnight I went from being able to do any physical test required to being unable to run 100m. I realised something was wrong so I went to see the physical training instructors for advice and they put me on a remedial running programme. I lived like this for two years before a new medical officer in 2004 thought something was up. At this point I had an ECG and the medical officer assumed that I’d just had a mini heart attack or was about to have one. Of course, the thought that I was going to have a heart attack was terrifying but also I did doubt it as I had always been healthy and fit. I was referred to a cardiologist who suspected this very rare condition, PAH. Similar to other PAH patients, I had never heard of this disease before so would never have guessed that my earlier symptoms could be a sign. While the doctor was explaining what PAH was I remember being concerned about what was going to happen next and what the future would hold. Like so many people, once I had my diagnosis I researched online and discovered that it was a ‘debilitating lung disease’. What shocked me most was when I read that my life expectancy was just two years. I was 44 years old and there was a possibility I wouldn’t make it to my fiftieth birthday.

Learning to live with PAH

Following my diagnosis, the reality of PAH had a huge impact on both me and my family; it felt like our lives had been turned upside down. My whole adult life had been spent in the Marines, I didn’t know anything else, and upon my diagnosis I had to leave and was unemployed for four years. For somebody that was so used to being active, both the disease itself and unemployment caused me to feel anxious and depressed. PAH is life-changing in every aspect – it took a long time to adapt and come to terms with this. Luckily, in my case PAH was diagnosed early and with the help and support of my friends, family and the medical team at Hammersmith Hospital I overcame the dark days. A positive mental attitude coupled with maintaining a healthy lifestyle, which I learnt in the Marines, has given me the strength of mind to take each day as it comes.

Hope for the future

It is now 2019, and I’ve survived long past the two year expectancy I originally read about; it has been 15 years and since my diagnosis more is being learnt about PAH meaning treatments have improved. I didn’t think it was possible but I’m looking forward to the next 15 years, and continuing to live my life to the fullest, whether at work, at home with family or just walking my dog along the beach. My advice to other patients who may have just been diagnosed with PAH is try and keep a positive outlook and take each day as it comes.

About Simon

Simon is a 58 year old PAH patient who has been living with the disease for the past 15 years. Simon has been physically active all his life, achieving a first Dan Black belt in Karate and serving in the Royal Marines. He still tries to keep active as he finds it helps him stay positive. He enjoys walking his seven month old Sheepdog called Peggy and cycling on a stationary bike. Simon also enjoys more relaxing activities such as reading and listening to music which has always been a passion of his.

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