Pulmonary hypertension (PH) is a very rare condition, affecting just 7,000 out of 64 million people in the UK. However, it is thought that more people have the condition and haven’t been diagnosed.
A recent survey, Living with Pulmonary Hypertension, by the Pulmonary Hypertension Association (PHA UK), 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. Indeed, 60% of respondents in the survey said PH had a major impact on their overall quality of life.
PH is high blood pressure in the blood vessels, known as pulmonary arteries, which supply the lungs. It is a life-limiting condition and is serious, as it can damage the right side of the heart. PH is rare, but can affect people of any age. It is more common in people who have another heart or lung condition.
When you suffer from PH, the walls of the pulmonary arteries become thick and stiff, making it difficult to expand and allow blood through. The reduced blood flow makes it harder for the right-hand side of the heart to pump blood through the arteries and this extra exertion can mean the right-hand side of the heart is weakened, leaving patients susceptible to heart failure.
Julie Royle, 58, was diagnosed on her birthday five years ago. She said: “I just thought ‘my life’s over’. I felt isolated and deserted by the world because I had PH, and no-one knew what it was. Nobody looked at me like I was ill but at my worst, I couldn’t move from my chair to the toilet without nearly passing out.
“I have this shadow with me all the time. I know none of us know when we’re going to die, but it’s like I’ve been given a life sentence because it’s never going to go away. I think about it every day.”
Julie, who is treated at the Royal Hallamshire Hospital in Sheffield, added: “When I was diagnosed I thought ‘why do I deserve this?’ Why do I look ok, but inside, I’m dying? I’ve gone through a lot of treatment, from a nebuliser that helped me to inhale medication to a line that delivered drugs straight to my heart. I’m now on oral tablets, which makes things easier.
“The fact that I’m still here to see things going on, that makes me happy. And the fact I can breathe makes me happy. But I’m not happy, fully in myself.”
Almost 600 patients responded to the Living with Pulmonary Hypertension survey, which reveals that concerns about life expectancy have the biggest impact on quality of life – with over 50% reporting a ‘major impact’. Almost two thirds said that financial worries also had a major impact on their lives.
The PHA UK is using the results of its survey to campaign for public policy changes that will improve quality of life for people with PH. Its advocacy programme, PHocus2021, is aiming to reduce the time to diagnosis, ensure access to treatments and reduce financial hardship incurred by living with the disease.
Iain Armstrong, chair of PHA UK, said: “Everyday life can be very challenging for people with pulmonary hypertension and the results of this survey show just how much the condition impacts upon quality of life for patients and their loved ones. This was vital research into what it means to have PH in the UK today and it provides concrete evidence which can be used to address the crucial need for targeted treatment and specialist care.”
Symptoms of PH typically involve breathlessness, fatigue, feeling dizzy or faint, black-outs, chest pain, a racing or irregular heartbeat and swelling around the ankles, arms and stomach. PH affects the ability to carry out basic tasks and get around. If you experience these symptoms and are concerned, your GP will want to see you.
For more information and support, visit www.phauk.org