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Heidi’s Story

Heidi’s Story

I was born on 30th October 1968. My blue colouring quickly gave away the fact that something was very wrong. I was diagnosed with inoperable complex congenital heart disease. Further investigation revealed a large VSD, transposition of the great arteries & a few other anomalies with valves & positioning of structures of the heart. My parents were told they should just take me home & enjoy me for the, possibly, 6 months I was likely to survive. I continued to defy the odds & at 2 ½ my parents were advised to move to a warmer climate to give me a better chance so the move was made from Germany to Australia where my maternal grandparents already lived. I then came under the care of Dr Celermajer (senior) at the royal Alexandra hospital for children, Camperdown.

At the age of 19 my move to an adult cardiologist brought me down with a bang as I was told “ Oh by the way, you have been told if you get pregnant you will die, haven’t you ?”. Yes this is an exact quote, permanently seared into my memory.

At the age of 23 I married & at 28 I became a foster mum. Over the 20 years of doing this many children have been in our home. We now have one long term placement, our daughter that joined our family at 6 months old & is now 13. I have continued to defy the odds. There have been a lot of bumps in the road but somehow I am still plodding along. In 2012 insufficient antibiotic cover during a dental visit resulted in bacteria moving to my heart & then onto my brain. This required brain surgery to remove an abscess that with the complications of my heart gave me a 20% chance of surviving surgery. Again I somehow got through  but was left with a lot less energy day to day after a 6 week hospital stay.

I use portable oxygen or a wheelchair if a longer walk is required but get around at home fine & still cook & do some household things although my husband does the majority. I also use oxygen overnight. The bigger picture now will more than likely involve needing to be listed for transplant at some point in the future. As I have the CHD & pulmonary hypertension from this I would need heart/lung. A huge undertaking so I am hoping it will be the distant future. I am currently 47 so feel I have done quite well given the initial prognosis & hope to keep plodding along for many more years.