Tony passed away in November, 2016. Tony was my first NZ connection to someone with Kartagener’s Syndrome, and little did I know how much he would inspire me.
Unfortunately the risk of sharing bugs meant that we could never meet in person. This however inspired both Tony and I to create an online platform to connect people, which is now Better Out Than In. I will be forever grateful for his IT help to make it happen!
Tony’s passing inspires me to continue the fight against respiratory illnesses, and I will ensure his legacy always lives on through Better Out Than In.
Ehara taku toa, he takitahi, he toa takitini
My success should not be bestowed onto me alone, as it was not individual success but success of a collective
Below is what Tony wrote for his page on this website.
Age: 27 years old
Occupation: Systems Engineer
Respiratory conditions: Kartageners Syndrome, COPD, Pulmonary Fibrosis & Bronchiectasis.
How does your condition affect you?
I require daily physio to drain my lungs which are at the point of requiring a lung transplant. I burn energy very quickly, and struggle to maintain my weight. I have frequent trips to a variety of specialists, and frequent doctors appointments with tests. I get regular chest infections, pleurisy and pneumothoraxes. I have lately also been pulling muscles in my chest / abdomen with coughing during my physio. I am also on low grade antibiotics to help stop chest infections.
What do you find are the best things that you do for your health and well-being?
Pulmonary rehab exercises, plenty of sleep, dietitian approved weight building drinks i.e Ensure. Z!
If you could wish for one medical breakthrough, what would it be?
For the doctors to be able to print me some new lungs!