It’s a Friday night and I am lying on my bed deciding on whether to call an ambulance. I’m really rather peeved as I had been looking forward to going to a dinner with my closest friends all week and had to cancel because the ticker has decided to do back flips. As usual, it has been completely inconvenient. I am experiencing chest pain and dizziness, but most of all I am really annoyed that I have no control over what is happening to me. It’s not that I am afraid, (not right now anyway); it’s the fact that I know what’s coming. I hate the needles, the tests, the drugs (that make me feel even worse than what I am feeling right now), I won’t be able to sleep and the worst part is, I am going to be alone. I don’t want to bother my friends; I can’t call my family and it sucks.
Some readers may be able to identify with my story. Other’s may have a great support network but may just want to learn more about ways they can improve their quality of life. Personally, I felt alone. There was no love interest lying next to me offering me comforting support, and no family sitting with me talking or just being. Regardless of rejecting self-pitying thoughts, this loneliness was shouting a symphony. I am a thirty something single woman and in another life, a life where my ticker was strong, steady and dependable. this may have been different. But the walls were coming in on me.
Whilst I did not know anyone who was going through the same thing as me, I was sure I wasn’t alone in this quest. Through my experience and struggle to find the support and information I needed, I decided to set up Hearts4Hearts, with an aim to provide direct support for all those who are impacted by cardiac illness.
I was born with a hole in my heart and a heart murmur. At six months of age I was admitted to hospital with wheezing bronchitis, where my condition was detected by the cardiologists. From then on, I had quarterly visits to the cardiologist until the age of nine. It was only when my parents moved interstate that my new cardiologist booked me in immediately for open heart surgery. Whilst a lot of people can live with a hole in their hearts - and some even close up - mine just kept getting bigger. I was always out of breath; my lips would turn blue and I was frequently unwell. Had they not operated, doctors said I would have been dead by the age of 15.
At 21 I had my first ‘episode’. It was quite a shock to be woken up by the feeling as though I was having a heart attack. I crawled out of bed, took my phone into the bathroom and called my doctor. I was vomiting, my heart was racing at two hundred beats per minute, I was experiencing chest pain and felt as though I was going to faint. Somehow I made it to a taxi and into my doctor’s surgery, where it eventually stopped.
This was followed by 12 more years of heart-related incidents; although it has been in the last three years that my heart has got progressively worse, visiting emergency departments weekly. After a series of failed medications I was lucky enough to be referred to my Professor who is internationally renowned and respected, specializing in Electrophysiology. I have since had many heart procedures and my condition continues to be a managed illness.
Throughout my journey I have been lucky to have amazing friends and family, however I sometimes felt that I had overstretched these friendships.
The longer I was unwell, the more I isolated myself from friends and family and in some cases they isolated themselves from me. I was afraid of losing my job, I was afraid of losing my friends and family because I was always sick and didn't know how to be fun anymore, I was afraid to not be able to support myself, and afraid that I might not survive one of these episodes.
I have lacked advice on how to improve my health and emotional state. I have struggled to support myself and have had to still work to pay the bills (often when my health was not up to it). I had searched for a support group or forum, but I couldn’t find anyone to talk to who was in the same situation as me. I was sure that I wasn't alone in this quest for support and quickly recognized that there was something I could do about it.
I asked questions of every medical professional I encountered, from ambulance officers to emergency staff. They all expressed how much a support group for people with heart problems was needed. The more I researched the more I was amazed by the statistics and the more determined I became to change it.
Heart disease is the biggest killer for women, for children under the age of five and affects two in three families. It is not just an older generation disease, nor one that is self-inflicted only. These statistics, along with the lack of understanding on how heart disease impacts life, has made it increasingly important for Hearts4heart to raise awareness. Heart disease is as life threatening as diseases such as cancer. It can be a well masked disease, where from the outside, you can appear perfectly healthy. It’s episodes can strike without warning.
Heart disease is cross cultural, multi-racial, non- denominational and has no preferences. Heart disease knows no age. It is my hope that Hearts4heart will raise awareness of heart disease, provide direct support for all of those who are impacted by cardiac illness, whilst encouraging members to live a positive and fulfilled life. I hope to connect cardiac patients to each other, as well as link families, friends, carers and supporters, to give you a safe place to learn, to share your stories, and to share and support each other through the highs and the lows with people who understand.
With love and good health,
‘A single rose can be my garden…a single friend can be my world’ Leo Buscaglia