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The Pacemakers
Story
Hello, my name is Stephanie Alexander and in October 2019, at only 25 years of age, I was diagnosed with Dilated Cardiomyopathy, or in simpler terms, heart disease.
Leading up to this time, the thought of having a serious medical issue, especially a disease, couldn’t have been further from my mind. My immediate family history was clear, my health was what I considered ‘fine’ at the time, and I was more focused on planning our wedding. The wedding of any girl's dreams, minus the soon to be diagnosed bronchitis. To get diagnosed and with the hopes of a round of antibiotics to get back to normal life, I needed to find a new GP.
Upon entering an appointment with a new GP, he performed a very thorough medical history check, the absolute works! I brought up that there were a few instances over recent years where I had chest pain and palpitations (weird feeling in your chest, feels like you skip a breath) which had led me to emergency, but I was sent home on the same day with nothing to worry about. Unknown to me, this GP’s background was cardiac health, so with his alarm bells sounding, I was sent for further testing.
Following an uncomfortable 48 hours wired up to an ECG (on a Saturday night of all nights), the results were irregular, so I was referred to get an echocardiogram (heart ultrasound). A couple of weeks later, the results were in, along with the news that would change my life...” you have heart disease”. Three days before our delayed honeymoon, bon voyage!
Thankfully, nothing happened on our honeymoon, but within a week of returning I ended up in emergency which ultimately resulted in a two week stay in CCU (coronary care unit). Turns out my heart was functioning at incredibly low levels, and I was in heart failure! This is when the medication began, 15 tablets a day to be precise!
Over the next few months, I was in and out of emergency, appointments, checkups, the works! At my 3 months checkup, the cardiologist decided they wanted me to wear a 7-day heart monitor, which lead to the next diagnoses of Ventricular Tachycardia (VT). This led to surgery where an implantable cardioverter-defibrillator (ICD) was fitted inside my chest, with the wires connected directly into my heart, not terrifying at all! This will act as my very own personal paramedic to shock my heart if required, just minus the doctor yelling “CLEAR”.
Since being diagnosed, my life has changed quite drastically. Some of the everyday impacts can range from feeling like I have run a marathon when I have just walked to the bathroom to literally not being able to stand up (literally unable to walk). The very regular trips to the hospital, although crucial, are mentally tolling and there is no joy in taking so many tablets every single day. Any standard flu or illness is automatically turned up to 10 due to a compromised immune system. The biggest, and still to this day, the most difficult thing to come to terms with is that I won't be able to give birth to the children I spent my life dreaming of, creating a family is an option that this disease has taken away from my husband and me.
This just scratches the surface of how this terrible disease can impact people, but fortunately, I am still here to make the most of this beautiful life! I appreciate the support I receive from my loving husband, my family and my closest friends. I am very fortunate to have plenty of support and care from so many people, this will continue to be paramount to my health, I am thankful beyond words.
If you know anyone who has been impacted, directly or indirectly, please don’t wait for the perfect moment, reach out for a chat, really listen to them and encourage them to talk. People often find it difficult to talk to people with an illness, especially after hearing some of the above, but just remember that if it's hard for you to talk about, imagine what that person is going through. Nothing helps more than someone to talk to.
In Australia, someone is hospitalised with cardiovascular diseases every minute, so please don’t neglect your heart health, if you are feeling unwell, go talk to your GP. This disease will not discriminate, no matter how old you are, how healthy you think you are, please be conscious of yours, and your friends and families, heart health. Advocate for yourself and always get a second opinion if you feel it's appropriate, no one knows your body better than you!
Heart disease today is still responsible for one in four of all deaths in Australia, positively, the prevalence of cardiovascular disease has been decreasing over time (declining approximately 80% since the 1980’s), due to research into risk factors, medications and interventions. Public awareness and support for the foundations that drive this research is the key driver of me sharing my story with you today.
Thank you for reading my story, please look after yourself and go get a heart health checkup today.
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Heart Research Australia
Heart Research Australia is based at the Royal North Shore Hospital, and funds the first-stages of research, supporting researchers to develop their initial ‘out of the notebook’ ideas into reality. As this type of research does not qualify for government funding, Heart Research Australia is 100% community funded. These ideas might never progress to research and into clinical trials without the help of private donations.
Heart Research Australia is different from other heart organisations, in that its researchers are practicing cardiologists who are also based at Royal North Shore Hospital, which puts them in the best position to translate knowledge from the ‘bench’ to patients ‘at the bedside’ to assist them in not only the progress of their research, but this patient interaction also triggers and identifies new areas of heart disease that require further investigations.
A great example of this bedside to bench research trigger is that our researchers, who are practising cardiologists based at Royal North Shore Hospital, have noted that there has been an increase in patients who are being treated for heart disease, who sometimes only have one or NO risk factors for heart disease – this finding is now being investigated by Heart Research Australia supported research to find an explanation for this.
Together we can walk/run/cycle or swim towards a world without heart disease!
Click here to visit our Heart Research Australia GoFundraise Portal
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