Cobey’s story

Pulmonary Arterial Hypertension

In 2018, aged just 21, Cobey was diagnosed with a rare and incurable lung disease. Thanks to research, advancements in treatment allow the newlywed, pharmacist and self-confessed dog lover to live a relatively normal life.

Cobey knows, however, that at some point, the medication may stop working and without research to uncover more options, a lung transplant will be a likely necessity.

For Cobey, research into lung disease means to chance to grow old with her husband and hope for a cure.

I went from being very active to not being able to walk my dog because of the shortness of breath. I would fall asleep at 7pm because of the fatigue. I saw a GP for the racing heart and they diagnosed me with anxiety, but they didn’t send me for any tests.

I had shortness of breath, a racing heart and fatigue. I rationalised all my symptoms but deep down I knew something wasn’t right.

During a routine check up for an unrelated heart issue in 2018 my tests were taking much longer than usual. They stopped halfway through the echocardiogram and brought my cardiologist in to speak to me. They said that I may have Pulmonary Hypertension as the right side of my heart had doubled in size from 2017 and my pulmonary pressures had gone from normal to high.

They wanted to admit me to hospital so they could fast track all my diagnostic tests as I wasn’t living in Brisbane. I spent five days in hospital and I had all sorts of tests done: blood tests, VQ scan, pulmonary function tests, 6-minute walk tests, right and left heart catheter etc.

I was diagnosed with Idiopathic Pulmonary Arterial Hypertension (PAH) in July 2018.

I was totally devastated. It turned my life upside down. At my age, you don’t expect to be told you have a life-threatening disease with no cure. Not when you think you have the rest of your life ahead of you.

I was told that at this stage having children would be very dangerous and that the medication I was put on to help my disease could cause birth defects. My husband and I had talked about having children in the future, but my diagnosis has made us re-evaluate these plans.

Adjusting my lifestyle was a big change. It’s not something you can get better from. I’ll be dealing with it for the rest of my life. Every day is a mental and physical battle.

Since I’ve been diagnosed and put on medication, my life has improved. Medical advances have come a long way and I’m hopeful of what the future holds with more research.