Tegan Dunmall was diagnosed with PH as a child. Now 32, she lives near Melbourne (Australia) and works as a Clinical Nurse Consultant.

“I was five when doctors found I had pulmonary arterial hypertension, and my mum was told my heart was the size of a male athlete’s.

By the time I was 11, I was in right sided heart failure, liver failure, and the other organs not far behind. I was on 30-40 different medications to manage fluid and breathing and seizures, but none were preventing me from heading towards a double lung and heart transplant.

However, going onto intravenous epoprostenol is the one key thing that saved me as it is the sole reason I am here today. I am now on triple therapy, with sildenafil and macitentan too. 

I think PAH has impacted every facet of my life. Because I was diagnosed so young, it changed the trajectory that my life may have been on.

My hobbies today are skills that I used to pass time in hospital, or while home sick. For example, I love to craft; I enjoy all sorts, but currently mostly enjoy crocheting.

My job as a nurse was entirely decided as I grew up in hospitals around nurses and doctors.

Everything I do has PAH in mind, from when I leave the house in the morning, to international travel. However, I don’t let it rule my life. It’s always there, but never the focus.

I think my family is the main reason for my positive outlook. They support me 100% and I can count on them if I need to share my burdens. My family and a few friends also support me by coming to appointments, and debriefing if I get bad news or new information.

My dog Raffy is also a brilliant support. He keeps me active and outdoors often.

The weather over here doesn’t affect me too much luckily, however, I do think living in Melbourne does help as we are lucky to have very little humidity. I find the Northern Territory and Queensland have higher humidity and this affects me a little.

We have a few specialist PH centres in Australia, more than when I was first diagnosed. Each state has their own, and I have attended two in Melbourne. The first one was when I was a child, and the second one as an adult. There weren’t any children to transition before me, so my transfer was a little rocky. One day I was a child, and the next suddenly an adult.”

Tegan’s advice for other people with PH

“Surrounding yourself in hope and positivity can do wonders. Things may be hard, but the support of your family, friends and medical team will be invaluable. Medical advances have come a long way in the 28 years since my diagnosis – from no treatment-specific medications, to being managed on three concurrently. Hope has kept me afloat in-between.”