June 13, 2017

Tegan’s story – Pulmonary Arterial Hypertension (PAH)

Life for me started out pretty normal. Mum, younger sisters and I, living out in the south east suburbs. Within a 6 month period life suddenly changed. Firstly I was diagnosed with Epilepsy, suffering regular grand-mal seizures; the ones where you lose consciousness completely. Shortly after this diagnosis I developed a cough that wouldn’t go away. With a GP finally deciding to send me for an X-ray, it became apparent all too quickly that something major was wrong.

At the age of 5, my heart was enormous, roughly the size of an adult male athlete. My second diagnosis was Pulmonary Hypertension, now known as Idiopathic Pulmonary Arterial Hypertension (IPAH or PAH). In 1995, this was not good news. My mum was told, even with the medication currently available I would have 5 years to live.

True to the doctor’s words, 5 year later and my symptoms begin to get worse. I deteriorated so much that I was eventually placed on the heart/lung transplant waiting list.

While I waited, I trialled any medication thought to improve symptoms. Some of these had horrific side effects worse than my disease, others had mild effects. I progressed further and further eventually developing right side heart failure and requiring oxygen at home. Eventually I was so sick I was unable to leave my bed or wheel chair, hospitalised more often than not. My seizure activity increased dramatically during this period.

Then one day a new medication became available, one that sounded risky, but might just pay off. My last option while I waited for a transplant. Intravenous Epoprostenol. A medication that would require the insertion of a permanent line straight into my heart to deliver medication very frequently. I would have to carry around a pump with my, have to care for this central line and my mum and her friends would help make my complicated medication every day.

Within a month of starting this, the changes were dramatic. Right heart returning to normal, walking more and more without issues and eventually coming off oxygen and no longer requiring a truck load of medications.

While this illness is with me for life I do not let this stand in my way. I work as a nurse full time, I walk and exercise on a regular basis and I thoroughly enjoy my hobby; Travel! My life requires planning and preparation more so than most I make it work.

My greatest achievement to date is traveling solo for three months across Europe and Scandinavia during winter. This may not sound like much but 3 months’ supply of medications and supplies weighs 60kgs and fills 2 large suitcases.

My goal in life is to live it to the full and not let my illness get me down.