For Tegan, research means longer life expectancy, more effective treatments and to one day find a cure.
Aged just five, Tegan was diagnosed with Pulmonary Arterial Hypertension. Her heart was roughly the size of an adult male athlete.
Her mum was told her daughter had five years to live.
Tegan had been suffering seizures, losing consciousness. Shortly after, she developed a persistent cough that would not go away. “With my doctor finally deciding to send me for an X-ray, it became apparent all too quickly that something major was wrong,” she says.
Five years later, aligning with her doctor’s timeline, Tegan’s symptoms began to worsen.
I deteriorated so much that I was placed on the heart/lung transplant waiting list. My seizure activity increased dramatically … I was placed on oxygen and used a wheelchair for all activities outside the house.
Pulmonary Arterial Hypertension (PAH) is a progressive disease caused by narrowing or tightening of the pulmonary arteries that connect to the right side of the heart to the lungs.
When a new medication became available, it was effectively Tegan’s last option while she waited for a transplant. It meant inserting a permanent line into her heart to deliver medication frequently; she would have to carry around a pump and her mum and her friends would have to help her take the complicated medication every day.
But within a month, she saw dramatic changes. The right side of her heart returned to normal, Tegan could walk more unhindered and she eventually came off oxygen, no longer needing a “truckload” of medications.
Now 31 and working as a full-time nurse, Tegan exercises regularly and can enjoy her hobby … travel. She has travelled solo for three months across Europe and Scandinavia during winter, taking with her three months’ supply of medications and supplies weighing 60kgs.
For Tegan, research means more effective treatments and hope of a cure one day.
“My life requires planning and preparation more so than most, but I make it work.
“When I was a child, my prognosis was poor, no longer than five years. Technology and medicine keep advancing, improving my chance of long-term survival … it’s now been (almost) 25 years since my diagnosis.”
Tegan is thankful for what research has been able to do for her condition but hopes that more research can provide more stability and certainty for the future.