Cobey’s story

Pulmonary Arterial Hypertension

In 2018, aged just 21, Cobey was diagnosed with a rare and incurable lung disease. The pharmacist and self-confessed dog lover has taken it in her stride and is determined to live a normal life.

I am a pharmacist working full-time. I have a partner (Thomas) who I have been with for about 5 years and I have a fur-child Rocky who is a rescue greyhound. I am a little bit dog crazy and spend my days off sewing coats and bandanas for my dog and his friends. I love spending time with my family and walking my dog. I have recently discovered a love for sewing.

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

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 even though I told them about my shortness of breath.

I was diagnosed with Idiopathic Pulmonary Arterial Hypertension (PAH) in July 2018. I was living in Yeppoon in 2018 completing my pharmacy internship and I came back to Brisbane to get my annual check-up at the Prince Charles Hospital – I have been monitored by them since 2016 for an unrelated heart issue[CG1] . During my check up, my tests (MRI and echocardiogram) were taking much longer than they normally did and during the echocardiogram, they stopped halfway through 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. All these tests pointed towards Idiopathic Pulmonary Hypertension.

Initially, I was totally devastated. It turned my life upside down.

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 partner and I had talked about having children in the future, but my diagnosis has made us re-evaluate these plans. Currently we are pretty happy with fur-babies. It’s a terminal disease with no cure so finding out at 21 that I had a condition like that was pretty hard. There is a lot of scary information out there about the disease, but everyone responds to treatment differently and I refused to let it beat me.

Every day is a mental and physical battle but I’m lucky because I can still live a fairly normal life. Since I started medication everything has improved so much so it doesn’t really affect my day-to-day life too much as I can still work full-time at the moment. I struggle to breath when I bend over and I still get tired quicker than most people and need to rest, but my heart doesn’t race anymore and I’m not as tired as I used to be. I can’t exercise like I used to so I settle for walking my beautiful dog every day. I used to play two games of TRL (touch rugby league) every week, go to F45 five times a week, walk the dog, play hockey etc. I sometimes get short of breath when exercising (walking faster or further than normal) so I need to stop and catch my breath. Adjusting my lifestyle was a big change.

I am fortunate I haven’t experienced the typical stigma associated with lung disease which many people do. I’ve more experienced the “you look perfectly healthy” kind of stigma which can be difficult to deal with because people don’t really understand that just because you look healthy doesn’t mean you are healthy.

It is my hope that more medications for PAH will be covered by the PBS so that people don’t have to stress about compassionate access to their second or third medications. We also need to see more funding for research to help find a cure.

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