Patient Stories

JIVANI’S STORY: Bicuspid Aortic Valve

A Third Chance at Life

My name is Jivani and I am twenty-five years old. I am incredibly honoured and humbled to write my story for The Baird Institute. It is a story about which I often keep quiet, but now I hope it can be shared as an inspiration to many.

It is because of your commitment to and investment in research and technology that I am here today and can share my story with you.

I was born in 1996 to my amazing parents and a family who adored me. I had my whole life ahead of me. At 8 days old, I went for a regular check-up with my mum where they would discover that I had a severe hole in my heart that needed attention. This was my first encounter with open-heart surgery at 10 days of age.
When I was 7 years of age and in year one, I was enjoying primary school and like any child, just wanted to be with my friends and have fun. Life was a little different for me though, and I never quite knew why.

Mum and Dad often pulled me out of school early sometimes to take me to cardiologist appointments – I thought all kids did this. I had ultrasounds and could hear my heart beating but I could also hear Mum crying at the end of the bed and I was clueless as to what was going on.

Little did I know that at seven years of age, I would have my second open-heart surgery to repair the hole in my heart that was slowly affecting my whole body.
I felt normal; life with a hole in your heart feels normal when that’s all you know. But check out the photo, I could barely crack a smile with my best friend! Looking back now, it is difficult to see myself so young, and so ill.

7 Days Till Christmas

Towards the end of 2019, I was a full-time university student studying criminology and was involved in activities like gymnastics, fitness classes and working part time at a furniture store. For me, life revolved around making it to a workout class and submitting university assignments on time. I was always very active, despite the previous surgeries, so I barely knew what it felt like to feel ill or tired anymore. I had just finished a fitness class at 8AM and felt like I was on top of the world – unfortunately, this was not the case. I noticed that I couldn’t catch my breath and it was taking me a while to form sentences, without running out of air in my lungs. I tried so hard to convince myself that it wasn’t my heart (because this was always at the back of my mind).

After a day or two I took myself to my local GP, who thought it could have been stress. What followed was an array of tests, hospital visits, cardiologist and heart surgeon appointments and many ultrasounds that proved that yes, I was experiencing heart failure and the leakage from my heart was putting significant strain on my lungs; they were slowly filling up with fluid. Each day it was getting more difficult for me to breathe and simple things, like taking a shower, felt like I was running a marathon.

I was experiencing severe heart failure, and at 23, I felt like my life was over.

A third open heart surgery was planned with Professor Bannon as my surgeon. Before I could even begin to comprehend it I was lying in a hospital bed awaiting surgery. There were 7 days till Christmas, and all I kept thinking was whether I would be out in time for family Christmas celebrations?

ANOTHER CHANCE

When I woke up in the ICU after surgery, I felt like I had been hit by a semi-trailer. Every time I moved; I thought my chest would tear apart. I had a million tubes connected to me and all I felt was the excruciating pain in my chest. I could barely keep my eyes open for 2 minutes before I drifted off. My lungs felt heavy, my chest was on fire and my throat was dry for the first few days after surgery. Within a blink of the eye however, I was five days post-surgery and feeling ok. This was a miracle for me. I was discharged from hospital on Christmas Day, 2019 and got to spend the day at home with my family.

When I look back at this moment, it doesn’t feel real. I get emotional about it, and I often think I can’t put it any other way than to say I have had a third chance at life. Despite having had two prior surgeries, my third surgery truly saved my life.

Having the surgery was a pinnacle moment for me, it changed everything. I became more in tune with my body and my physical health; I became more focused on staying happy and surrounding myself with positive people.

I am now able to attend the gym regularly and spend time with my wonderful family and I have the support of my partner when life gets tough. Now I have the opportunity to inspire people through my third chance at life.

It has become a tradition for my family and I to donate to The Baird Institute each year as our way of thanking them for all their hard work AND for saving my life. I owe it to Professor Bannon, his team at The Baird Institute and to you for every tick that my mechanical valve makes, for every breath that I get to share with my loved ones and for every bit of life I get to enjoy today. This is the profound and life changing impact that scientific research and technology can have on saving the lives of those who need open-heart surgery.

Please donate now to The Baird Institute in their appeal to save lives. They saved mine and may one day save yours!

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