A woman has said she feels like “the luckiest person alive” following a double lung transplant.
Paula Massie, 39, from Peterhead, was diagnosed with pulmonary hypertension 10 years ago and underwent the major procedure in May.
The condition, which is believed to affect just 7,000 people in the UK, causes high pressure in the blood vessels connecting the heart and lungs which puts increased strain on the organs.
Symptoms include severe breathlessness, fatigue, blackouts and swelling around the ankles, arms and stomach.
It can affect people of all ages, including children, and there is no cure, with many people opting to have heart or lung transplants to manage the illness.
Paula found out her condition was the result of a gene mutation which was discovered by a doctor two years ago.
She said: “It’s such a rare illness that GPs aren’t always educated about it and don’t think anything is wrong when people go to them with symptoms, which is why it’s important to raise awareness.
“You always hear about bigger medical conditions in the media, but it feels isolating to have a lesser known illness like PH.”
Paula was placed on a year-long waiting list for a lung donation and is encouraging others to sign up to become donors.
She said: “I’m trying to raise awareness about organ donation because I think there are a lot of misconceptions about it.
“People often think their organs can’t be used when actually they can and I think it’s great that an opt-out system will be introduced in Scotland.
“It’s really important for people like me and makes a huge difference.”
A spokeswoman for NHS Blood and Transplant said: “There are currently more than 6,000 people in the UK in need of an organ transplant and more than 300 patients are waiting for a lung transplant.
“We urge people to register their organ donation decision on the NHS Organ Donor Register and ensure they tell their families.
“The law around organ donation is changing in England and Scotland next year and families will still be approached before organ donation goes ahead.
“We know families find the organ donation conversation with our nurses much easier if they already know what their relative wanted. This conversation can save lives.”
Paula says she felt horrific immediately after the transplant, but is finally back to her old self six months down the line.
She added: “Before the transplant I couldn’t do the things I wanted and I had no energy.
“I’m a foster carer so it’s great to finally have my life back.”
Research released for Pulmonary Hypertension Awareness Week, which takes place from November 4 to 10, revealed 53% of sufferers have experienced or been diagnosed with anxiety or depression, and 43% feel lonely.
The theme of this year’s PH Awareness week is #TogetherForPH, and Pulmonary Hypertension UK is encouraging its members to meet friends and family to combat loneliness and isolation.
Iain Armstrong, chairman of the PHA UK, said: “The physical symptom burden of PH is huge, and now we know just how much it impacts people emotionally and mentally too.
“You often can’t tell someone has PH just by looking at them – so encouraging understanding of this rare, devastating condition is vital.”
To find out more about pulmonary hypertension or get involved with PH Awareness Week visit www.phauk.org
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