Lucy was just 18 when she was diagnosed with Pulmonary Arterial Hypertension (PAH).
“I don’t think I actually understood the full severity of my illness, even though I’d been told that I would die within a few years. I felt quite determined to improve my diet and exercise in an attempt to prolong my life, but perhaps this was a way to avoid dealing with the emotion. It certainly threw a spanner in my works and caused me to make some very dubious life decisions.
“The cardiologist told my parents after he told me. I’ll never forget how they broke down after they came back into my hospital room.” The 52-year-old wife, mother, daughter and friend says she was diagnosed at a time when so little was understood about the condition.
“My initial symptoms were breathlessness and fatigue. As a teenager, I was embarrassed by my symptoms, thinking I was just unfit, and tried to hide them. After a time, I started breaking out into the sweats and passing out. That’s when I took myself to see a doctor.
“My GP initially diagnosed Iron and Vitamin B deficiency but when I showed no improvement with supplements, he sent me for a plethora of tests and, later to see a general physician. I had EEGs, ECGs, x-rays and CAT scans. Luckily, a slight murmur led the physician to refer me to a radiologist who immediately admitted me to hospital.
“There, I had several more tests, including a Right Heart Catheter. There were no specific Pulmonary Hypertension medications back then but I was placed on a combination of Warfarin and Nifedipine, which help to stabilise my condition for a little over 20 years.”
For Lucy, accepting the impact that PAH has on her day-to-day life is a work-in-progress.
“We live in a goal-oriented society so I struggle with my inability to be as productive as I would like to be. I’m slowly getting better at accepting the things I can’t do.”
Since her diagnosis in 1988, Lucy has witnessed many advancements and hopes that, with greater investment in research, the future will be even brighter for those to come.
“I’ve seen a large number of treatments become available since my diagnosis. I dream that there might one day be a cure. I’d love to experience being a healthy adult and maybe even learn to surf.”
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Sharing your personal experience can help others to better understand their condition and cope with their diagnosis. It can also help encourage people to identify early signs and symptoms and get them checked.
