Going Global: My life with PH in Sydney
Erin Boustani, 35, lives in Sydney (Australia) with her husband and two cats. Her mother had pulmonary arterial hypertension, and she was diagnosed herself at 17.
“I’ve had PH for so long that it really doesn’t concern me as much anymore. I’m used to considering it during every decision I make, and to the daily medication and the three-weekly injections.
I used to let it overrun my life, especially when I wasn’t feeling well, but I don’t anymore. I would have to say the biggest kick in the guts is not being able to have children. I feel I was diagnosed early enough in life that kids weren’t really on my radar, so I was able to come to terms with it. Seeing other people with their babies or announcing pregnancies sometimes gets to me, but I’m pretty good about it now.
I focus on what I can do, not what I can’t do. For example, I feel sad sometimes about not being able to have children, but I reframe and know I will be the best aunty to my nieces. Perhaps having children was not what I was put on this planet for.
I love spending time with my husband, family and friends. I love to work out and am always trying new programmes to get stronger and stay as fit and healthy as possible. I love learning new things and am always looking to level up in some way.
In terms of how temperatures affect people with PH over here in Australia, it’s a mixed bag. I hear some people have more trouble with the cold temperature and equally people have trouble with the hot temperature.
For me, the icy cold wind of winter messes with my breathing. In summer, the heat itself is fine but I get swelling in my ankles which is very uncomfortable. The nice neutral spring or autumn days are perfect; not too hot, not too cold!
I feel truly blessed to be in Australia with the healthcare system that we have. My PH care has been phenomenal, and I haven’t had to pay for any of it.
My medications are all covered or subsidised by Medicare, which allows all citizens access to free healthcare and emergency care in our hospitals. We also have the Pharmaceutical Benefits Scheme (PBS) that significantly subsidises many medications for people. I count my blessings for this system every day.
I am part of the Pulmonary Hypertension Association Australia (PHAA) group on Facebook. It is a nice group, and everyone is very supportive of each other. I enjoy the group as I know I’m not alone. I also tend to connect individually with people on Instagram to get more of a personal connection when I’m feeling down or need help. I’ve built quite a few lovely friendships that way.”