Heidi’s Story

I was born on 30^th 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.

On the 22nd July 2019 I was listed for transplant after talking about the possibility for a couple of years. At 3am on 5th April 2020 I got the call to say that they had  a heart & lungs that were a match for me & I needed to come straight in. We arrived at St Vincent’s Sydney just after 4.30am & after hours of tests & waiting I went down to theatre mid afternoon, they started around 6pm & finished around 10.30pm. There was a lot of bleeding & they were unable to close me up that evening, they packed my chest & took me to ICU & I was taken back to theatre the next morning to close me up.

I was in ICU for 9 days & then moved to the ward. I struggled with severe fluid retention in my legs & feet for weeks which made moving very difficult. I was in hospital for 10 & a half weeks, I went back to theatre a couple of times to wash out both sides around my lungs. I had lots of chest drains in & out over my hospital stay. I am having problems with bouts of 24/7  nausea. We are working on trying to find out why it is happening & how to stop it. It has been a bit of a bumpy road but I am slowly getting there.

Despite all the bumps along the way I am so incredibly grateful to have been given this priceless gift & amazing opportunity. For the very first time in 51 years I know what it feels like, to have properly oxygenated blood. I can breathe & for the first time ever I am pink not blue. I am so thankful to my donor & to their family for giving such a precious gift to me , at what would have been,  such a difficult time for them.