A Lancashire dad who was diagnosed with a life-threatening disease after struggling to breathe is calling for more understanding of the rare condition. He tells AASMA DAY how coping with things mentally as well as physically is a major part of the battle.
It was the week of a major high and a life changing low when David Scott discovered he was expecting his fourth child and diagnosed with a rare heart and lung disease within days of each other.
David, 40, who lives in Fulwood, Preston, has pulmonary hypertension, a life-limiting illness that causes high blood pressure in the blood vessels connecting the heart and lungs.
He is speaking out about his story following the results of a survey by the Pulmonary Hypertension Association (PHA UK), which shows pulmonary hypertension has a major impact on people’s quality of life.
In the same week David discovered his wife Kylie was pregnant with their fourth child, David, an operating theatre manager at Blackpool Victoria Hospital, was diagnosed with the condition. David had always been fit and healthy and exercised regularly playing football and running half-marathons.
But in 2012, he began finding exercising difficult and getting breathless when doing simple things like climbing the stairs or even talking.
It was very difficult. I know everyone dies eventually, but it’s very rare that you’re given a sell-by date.
Investigations revealed he had pulmonary arterial hypertension. David says: “I had never heard of pulmonary hypertension when I was diagnosed so I did what any 21st century boy would do and I asked Dr Google.
“And that’s when it all went black. Out of everything I’ve been through healthwise over the last four years, the memory of being told I had pulmonary hypertension is still the thing that haunts me.
“That same week I was diagnosed, I found out my wife was pregnant with our fourth child. Immediately, I wondered whether I would even see my baby being born.
“It was very difficult. I know everyone dies eventually, but it’s very rare that you’re given a sell-by date.”
Pulmonary hypertension is very rare, affecting just 7,000 out of 64 million people in the UK. The Living with PH Survey, which looked at all aspects of life with PH, discovered that emotional and mental wellbeing and relationships with family and friends are severely affected by the condition.
It also revealed that 48 per cent of patients waited over a year after first experiencing symptoms before being diagnosed and 40 per cent had to see four or more doctors.
David, who is treated at the Royal Hallamshire Hospital in Sheffield, says: “If anything, it’s the mental strain that I have suffered from more than the physical symptoms. It’s a draining condition that unless you look to get support for it has the potential to drag you down. The mental strain is the hardest part as things just creep up on you and I keep having bad memories of when I was first diagnosed.
“You are always conscious you are not the same as everyone else. When my daughter Lorien was born, seven months after I was diagnosed, she reminded me that life is never hopeless if you don’t lose hope. My children help me manage my condition by making me smile more than anything or anyone can – even when I don’t feel able to.”
David, who has daughters Abby, 14, Megan, 10, Matilda, six and Lorien, three, is doing really well and managing to exercise a lot, baffling doctors. He says: “Doctors are really pleased with my progress and I have levelled out. I am not getting any worse, but I am not going to get better either. It is all about trying to cope with everything mentally as well as physically. It is about making sure you get as much psychological support as you can. The support of my wife and my daughters has been invaluable.”
The survey revealed that concerns about life expectancy have the biggest impact on quality of life with over 50 per cent reporting a ‘major impact’. Almost two thirds (63 per cent) said that financial worries had an impact on their lives. The PHA UK is using the survey to campaign for public policy changes that will improve quality of life. Its programme, PHocus2021, is aiming to reduce the time to diagnosis, ensure access to treatments and reduce financial hardship.
• Symptoms of Pulmonary Hypertension typically involve breathlessness, fatigue, blackouts and swelling around the ankles, arms and stomach.
• Pulmonary Hypertension affects the ability to carry out basic tasks and get around.
• Adult patients with PH are treated at seven specialist centres across the UK and children with the disease are treated at Great Ormond Street Children’s Hospital in London.
• Thanks to a range of highly advanced treatments developed over the last 15 years, people with pulmonary hypertension have seen quality of life improve and life expectancy double to around six to seven years on average, with many living longer. But there is no cure. Some have heart and lung transplants.
• People can be born with PH or develop it at any time and it can affect anyone regardless of age or ethnic background. It affects more women than men.
• For more information about pulmonary hypertension, visit: www.phauk.org, call the PHA UK office on: 01709 761450 or e-mail: firstname.lastname@example.org.
• For more information about PHocus2021, visit: www.phocus2021.org.uk