Miranda and family

Miranda's story of Cardiomyopathy

“I was 21 years old when I was diagnosed with a condition called Cardiomyopathy"

I knew what it was because my father had passed away from it back in 1984 when I was just 16 months old.

miranda and her baby

I had become lethargic, could barely walk along a flat path before needing to stop to rest, and was extremely breathless to the point of feeling sick. I was carrying litres of fluid in my legs, all the way up to my lower back and waking up during the night gasping for air as fluid filled my lungs.

I was finally admitted to hospital after my mother took me to the GP.

I went on a myriad of medications and for a long time that drug therapy worked well, I worked full time and refused to let my diagnosis stop me from living a ‘normal’ life.

It wasn’t until I wanted to have a baby that I realised how much my life was affected. I was told a pregnancy would likely kill me... it was heart-breaking. All I wanted was a baby.

When I was first diagnosed, my sister in law had offered to carry my baby... after birthing two children of her own, that offer hadn’t changed!

In January 2013, we began our surrogacy journey, but I soon found out my egg supply was low and there was a 50% chance I would pass my heart condition onto my unborn child. I did not want this at all. I couldn’t deal with the thought of my child going through this horrendous disease too, so I found an egg donor.

In June 2014, I found out I was going to be a mum! It was the best news ever, I was thrilled.

In early December, I held a baby shower for my unborn baby boy and the next day, at an appointment at St Vincent’s hospital, I was told I needed a heart transplant...

My initial reaction was “No!” How could I go through this when I was just getting ready to become a mum? I didn’t have time for a heart transplant.

My miracle baby boy was born in early February 2015, after a textbook labour.

I blocked out my pressing need for a transplant and I didn’t want to think about all that was ahead of me. Eventually, my mum and the doctors made me I had to do it or I wouldn’t survive. I began all the blood and tissue tests, a skin check, a dental appointment and a bone scan among many other tests. During my right heart catheter, I had a respiratory arrest and I was sent to ICU immediately.

That week in July, I was listed for a heart transplant and just four weeks and four days later, on a Sunday morning, the call came.

My transplant was a success, the operation was just over three hours long and I woke up that same evening, with pink toes instead of the usual blue ones! I spent 30 days in hospital including my 33rd birthday – I was lucky I had a good recovery.

Miranda holding a thank you sign

I’m now 17 months post-transplant and my life couldn’t be more different. I recently went back to work part time and have enjoyed it immensely. Best of all I can now run and play with my little boy, carry the shopping bags in from the car and I can participate in life in full!

In 2018, I took a spectacular leap of faith, jumping out of an airplane at 14,000ft to celebrate the second anniversary of my heart transplant. What made it even more special was that I did it with my ‘transplant sister’. We had received life-saving gifts from the same organ donor and we've been best friends ever since meeting in the hospital that day.

I owe my life and this second chance, to my team of doctors and nurses, but most of all to the family who said yes to organ donation. It's bittersweet to be given such a gift when you know somewhere in a hospital, a family is saying their final goodbyes," - Miranda.

You can help patients like Miranda by supporting vital discoveries at the Victor Chang Cardiac Research Institute.

Acknowledgement of Country

The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.

Victor Chang Cardiac Research Institute - The Home of Heart Research for 30 Years