Carly MacDonald, 36, lives in a small town in Scotland with her fiancée Scott, dog Maisie, and cat Mya. She joined the PHA UK shortly after being diagnosed with idiopathic pulmonary arterial hypertension in February 2022.
“I attend the Scottish Pulmonary Vascular Unit (SPVU) at the Golden Jubilee Hospital, however due to the distance from home I attend Aberdeen Royal Infirmary where the team from the SPVU have clinics.
I can’t thank the SPVU team enough. When I was admitted for testing for PH, having learned about it only a few days prior, it was such a scary time and I had one hundred and one questions. They answered them all and never made me feel as though I was a burden for having so many questions. I’m so grateful for their hard work and dedication to this condition but I’m most grateful for the support they provided me and Scott throughout my diagnosis, one of the hardest times of our lives.”
“I joined pretty much immediately after diagnosis. It was a recommendation of the SPVU that I join, they advised this is where I’d be able to get reliable information and that it was a great form of support.”
“I enjoy reading the Emphasis magazine that keeps me up to date with studies, research findings etc and also lets me read the stories of other people living with this condition. I’m still learning about this condition and PHA UK have a number of resources that support me with this.”
“Stay away from Google! The information on there is so out of date and will only increase anxiety.
Testing and diagnosis is such a difficult time as there’s so much to take in. I had a very short diagnosis process after collapsing at home (having not heard of pulmonary hypertension before) and was diagnosed within 16 days. My life turned upside down in those 16 days, as did my family’s.
Try not to worry about the future, and most importantly enjoy life. I think being diagnosed with this condition really puts life into perspective, I learned to appreciate the small things and care less about the things I have no control over.
There’s a great Facebook page ‘Pulmonary Hypertension Association UK – Official Facebook Group’ where you’ll find so much support from people who are living with this condition.”
“Spending time with my family, friends and pets makes me happy, as does walking along the beach – and I love getting away in the sunshine, lying by a pool cocktail in hand. Bliss!”
“Being a phighter is empowering, it’s advocating and educating. I’d never heard of pulmonary hypertension before I was diagnosed. Prior to diagnosis I’d tried to hide my symptoms and not let people see my breathlessness.
Diagnosis for me was liberating, knowing there was a reason for the symptoms. I’m really open about my condition and will talk to anyone willing to listen. The more people who know about this the better, awareness is key to improving outcomes for people with PH.”
It’s free to become a member of the PHA UK. Find out more here.