Cassie O’Brien is one person who has defied the odds. For someone who wasn’t expected to live beyond her toddler years, Cassie has certainly given life a red hot go. Diagnosed with congenital heart disease at birth and undergoing not one, but two open heart surgeries by the time she turned three, Cassie knows the true meaning of being a walking miracle. Late last year she celebrated her 40th birthday and while knowing every day is a bonus no matter what, Cassie continues to embrace her own heart condition while helping to support others as the new leader of Heart Support Australia’s (HSA) Peer Support Group in Caboolture.
Did you know that congenital heart disease is the most common form of birth defect in Australia, affecting about nine in every 1000 babies? There are many types of childhood heart diseases and the severity varies in every baby. Some defects are simple and do not require treatment, while others are more complex or life-threatening and may require multiple surgeries over many years. Either way, it can be a lot for both the patient and their family to deal with and that is where the HSA Peer Support Groups can be a saviour. Recognising the profound emotional, physical and psychological toll of living with heart conditions, the group offers a safe and nurturing space where individuals can share their experiences, seek guidance and find strength in solidarity.
Doctor appointments, hospital visits, blood tests, rehab sessions, you name it and Cassie likely has to do it as part of everyday life. While it may seem like a lot, she doesn’t know any different and takes it all in her stride.
“Some days, it can be a lot just getting out of bed,” Cassie explains. “The heat hits me hard and at times, I experience headaches which can last for a few days or I have to spend hours hooked up to my oxygen. But as much as it can suck, it is what it is and this is life as I know it. I guess it could be worse!
“So for me, it's just take the day as it comes. So I'm not pedantic about numbers and tests and doctors telling me I have to follow a certain path because that’s what the rules are. I just tootle along to whatever I fancy and if I'm having a bit of a moment I get in touch with my nurse and tell her what I’ve done.”
Cassie has been a member of HSA for more than 10 years, finding the support invaluable while living with a chronic illness and navigating the intricacies of motherhood at the same time. Cassie was just 20 years old when she fell pregnant with her son. It was both a joyous and scary time with her heart dealing with a lot of strain.
“I was told not to have any more children after my son, especially when I spent the last three months of my pregnancy in hospital,” Cassie recalls. “It took a big toll on my heart and I know I’m lucky to have been able to have a child because I was never meant to do that, but I survived having my son.
“It wasn’t an easy time, I felt lost trying to navigate how to raise a child while being chronically ill – there is no user manual for that.”
As HSA’s youngest peer support group leader, Cassie aims to be an outlet for people who have gone through or are going through heart issues. The group seeks to combat feelings of isolation and uncertainty, replacing them with a sense of community, resilience, and hope.
“It’s hard for people to fully understand what it’s like to be a heart patient unless you’ve been through it yourself – it is alienating to live with heart disease,” she says. “There’s a different kind of support from people who have experienced what you have experienced first-hand.
“It’s a safe space where you can just vent – all those crappy hospital appointments, new medications, new testing, the group is for people to meet people they can call or catch up for a coffee with and share their experiences.”
While Cassie has been somewhat fortunate to have only undergone two open heart surgeries so far, she knows there will come a time when she has to go through it again. The next time it will likely be for a heart replacement.
“The next step, once I decline far enough, will be undergoing a heart and lung replacement, which is an enormous undertaking,” Cassie says. “I have to get to a point where I’m sick enough to need it, but not past the point where it’s too late or I’m too old.
“If there’s anything I’d love to see happen, it would be to have a mechanical heart, that would be amazing and make life so much easier!”
The HSA Caboolture Peer Support Group meets on the second Saturday of each month in the Bronze Room, Caboolture Sports Central. If you would like to know more or to get involved, please contact Cassie via cassieobrien@outlook.com.au or 0416 688 452.