Patient Stories

SHANEEL’S STORY: Rheumatic Heart Disease

Shaneel with his daughter

I would like to thank The Baird Institute for giving me this opportunity to tell my story, it’s an honour.

I was diagnosed with Rheumatic Heart Disease at the age of 13. It was all very odd how it happened. I remember having a stomach ache that just wouldn’t go away and somehow during all the check-ups and tests, my GP picked up something in my heartbeat which eventually lead to the diagnosis.

The rest of my teenage and young adulthood years was pretty uneventful. I would have my regular yearly check-up with my cardiologist, but otherwise my life was normal; lots of sports, plenty of laughs and good food. My cardiologist did always remind me that my leaky aortic valve would need to be replaced one day. I also knew it was coming but I guess I always thought of it as an “I’ll deal with it when it happens” type of situation.

That day did come eventually in 2011. I still hadn’t felt any symptoms from this condition that I had carried for at least 16 years, but I guess my valve had passed that safe threshold in the eyes of my cardiologist and it was time to operate. The operation itself went smoothly, I know having open heart surgery wasn’t exactly straightforward but from what I could tell, everything went to plan. I now had a new tissue valve which would take me through the next 5-15 years of my life.

Post-surgery I eventually went back to my once-a-year check-up schedule. I got married, had 2 beautiful kids and just carried on like most other people.

Now, fast forward to October 2021 and things started to change.

I knew I was getting older, but this felt a bit different… struggling for breath was not something I was used to, but I ignored it for the first month. As the weeks and months passed by things slowly but surely got worse. Basic everyday tasks just seemed so difficult, and my quality of life was dropping fast. In January 2022, my cardiologist confirmed what I already suspected. The tissue valve that I had received in 2011 was now deteriorating quickly and we had to get it replaced again.

Pre-surgery tests were booked in but I never made it to those appointments. I checked myself into Burwood Emergency department late February 2022 after struggling through a tough 24 hours at home. In hospital I was told that my lungs were full of fluid due to my weak heart valve, and they would basically stabilise me until they could find an operation timeslot at RPA where the surgery had to be done… hopefully within the week. That week was a struggle, the doctors and nurses were fantastic, but I think my heart valve was giving up fast. A week later, I was transported to RPA via an ambulance with lights and sirens. I was told that this trip would take 20 minutes, but it felt like 20 hours! This was the worst I had felt throughout my entire experience thus far. I felt like I was drowning, each breath felt like it was going to be my last.

Once I got to RPA, the ICU team could see that I really wasn’t looking too good. That’s where I first met Dr Plunkett who was the cardiothoracic surgeon on duty. After stabilising me and quickly going through the documentation of the many many tests I had already done over the last week, I was told of the grim reality of my situation by Dr Plunkett. My heart is operating at 20% capacity and the situation isn’t great. The next set of words that he said, I will never forget… “I will do my best to get you out of this situation mate, don’t you worry”.

I wouldn’t be able to have the original open-heart surgery as originally planned as that would more than likely kill me, so Dr Plunkett worked with his colleagues to devise a new plan. They would insert a new tissue value (via keyhole surgery) and basically push out the old tissue valve.

I didn’t know then but apparently this procedure had never been attempted with an existing replacement valve before which is just amazing if I think about it now.

I woke up with the usual tubes and needles which I had experienced all before in 2011 but unbeknown to me, I had actually been in an induced coma for 5 days. As I slowly got to piece together the events after I had been put to sleep, I came to know exactly how lucky I was to be alive. To start off, my body had initially rejected the life support machine, so I went into cardiac arrest. I had to google this term ‘cardiac arrest’ when I was told it, but I don’t think I will ever forget it!

Second term that I had to google was ‘ECMO’. Extracorporeal Membrane Oxygenation, a mouthful, but this amazing machine kept me alive and gave my heart and lungs a break. A break that was needed before any surgery could be performed. The rest of the recovery was straightforward, especially in comparison to the events that led up to it. I’m alive and now well, feeling great but also grateful. Things could have been so different, but a combination of great people and world class medical technology is why I’m here today telling my story.

The important research and development done at The Baird Institute will ensure there will be many stories like mine in the days, weeks, and years to come.

Stay in the loop

Subscribe to our Heart to Heart Newsletter to keep up with the latest developments in heart and lung research from The Baird Institute.

Honour a Loved One

  • Fundraise in memory of someone special to you.

Challenge Yourself

  • Run a marathon
  • Do a long bike ride
  • Walk 10km each day for a month
  • Do 50 sit ups every day for a week
  • Join an organised event such as the City to Surf

Organise a community event

  • Have a backyard sausage sizzle
  • Host a trivia night

Seek sponsorship to help you quit those bad habits

  • Give up smoking
  • Refrain from alcohol for a month or more

Celebrate Through Giving

  • Choose to give on your birthday: Instead of giving you gifts, ask your friends and family to donate to The Baird Institute.
  • Say “I do” to improving the lives of heart and lung patients: Invite guests to donate to The Baird Institute on your wedding day
  • Turn anniversaries or personal milestones into fundraising events.

Create a CrowdRaiser on GiveNow

  1. Go to CrowdRaiser for The Baird Institute.
  2. Click on the button “Fundraise for this cause” – just under the header image.
  3. Create your Crowdraiser. Fill in the requested details.
  4. Customise your campaign. Add images and messages to make your CrowdRaiser unique.
  5. Share the link to your fundraising page via email, social media, or any way you like.
  6. Let us know via [email protected] that you have created a fundraiser so we can say thank you.

Join a community passionate about making a difference. GiveNow provides a dedicated platform for Australian charities, ensuring your efforts directly support our mission.

Start a Facebook Fundraiser

  1. Go to Facebook fundraisers.
  2. Click on the blue button – “Select nonprofit”
  3. Search for and select The Baird Institute
  4. Set your fundraising target
  5. Choose your campaign end date & a title for your Fundraiser
  6. Personalise your fundraiser: Use the existing wording and photos or choose your own.
  7. Click on ‘Create’.
  8. Invite friends and family. Share the link for your fundraiser and encourage others to contribute.
  9. Let us know via [email protected] that you have created a fundraiser so we can say thank you.

Celebrate where your friends and family connect. Leverage your social network to make a real impact.