For Zali, having a support group means knowing she is not alone … and that she has the support of other young people like her who understand her experiences.
Less than two years ago, Zali was an active 18-year-old with a love of dancing and dreams of travel.
But in November 2019, having unexpectedly experienced heart palpitations and shortness of breath, Zali was diagnosed with Idiopathic Pulmonary Hypertension (PH), an increased pressure within the blood vessels of the lungs.
Zali’s diagnosis has left her with a pump constantly connected to her chest, administering medication to ensure that oxygen flows around her body. If the pump stops, Zali has just 15-30 minutes to fix it before she can go into respiratory distress.
“Being attached to something constantly is really quite hard and took a while to get used to,” she says.
“It was quite hard recovering from that diagnosis. Being told that you will be connected to a pump forever and cannot have kids is quite emotionally challenging … and the day-to-day management of the condition is extensive and exhausting.”
Zali has moved to Brisbane to have better access to her treatment and a year of COVID-19 disruption has given her time to reflect. She has gradually adjusted to living with her condition, and the limitations forced upon her.
“I’ve adopted the mindset that there is nothing I can do about my illness for now, so no point dwelling on it. Before my diagnosis, I was scared and sheltered but I have changed the way I view things.
I now realise life is too short not to take risks and live a little.
Importantly, through Lung Foundation Australia, Zali has found a support group.
Throughout Australia, support groups facilitated by Lung Foundation Australia provide a safe space for people to feel heard and understood.
“It’s been nice to see there are other young people with a similar condition and to hear about everyone’s experiences with medication,” Zali says.
“If you are unsure about how you are feeling, you can talk about it and know you are not alone.”
Like most 20-year-olds, Zali is looking to the future, with dreams of returning to dance, travelling the world and even starting a family of her own. Current treatment options for people living with PH mean such dreams can feel out of reach but donations and research can help change this.
“I hope that one day I can go back to doing the things I did when I was younger … I want to dance again, it used to make me really happy.”
No one should ever feel alone. Your donation helps us to fund support services that help people negotiate the challenges of living with a lung disease. Support us to support our community.