It’s 11pm and the phone rings. This could be ‘the call’. It’s not. It’s my grandmother calling to tell us my cousin has had her baby. We go back to holding our breath. We are waiting for a call that will launch our family into the familiar but unknown world of organ transplantation. This happens to be fourth time we’ve been through this.
This time we’re hoping an organ donor can be found for my brother, Aaron, who needs a liver transplant, for the second time.
My brother and I are unintentional veterans of organ transplants. My brother had his first liver transplant when he was 18 and a lung transplant when he was 33. I also had a lung transplant nearly six years ago and there may be a time in future when I’ll need another one to save my life.
When we were born the doctors told my mum and dad that we would be outlived by our grandparents. The life expectancy for CF back then was barely into double digits
My brother and I were both born with cystic fibrosis - a recessive genetic condition that can affect the lungs, liver and digestive system. When we were born the doctors told my mum and dad that we would be outlived by our grandparents. The life expectancy for CF back then was barely into double digits.
This time we know that when Aaron gets the call he’ll be rushed to hospital and prepped for theatre to undergo an 8-12 hour operation as surgeons delicately remove the liver and replace it with a liver from a donor. It’s far more complex than I can explore in words but we put our faith in the transplant surgeons who are the best in their field at this. When Aaron wakes up for the first time after the operation we will be there. But until then we’ll be anxiously waiting for the call to let us know the surgery has been a success.
When I got the call for my lung transplant I was raced to hospital in an ambulance and was in surgery within the hour. The lungs I was born with carried me a heroic distance but unfortunately became so scarred and damaged by CF that they were only running at 19 per cent on a good day.
Despite health challenges Aaron (stage name Captain Reckless) has established himself as a musician in the Australian Rockabilly and Psychobilly scenes. Source: Supplied
To receive healthy lungs from my donor when I did was truly a lifesaving gift. It allowed me to get back to living my life and do simple things that can be easy to take for granted, from walking up stairs and eating food, to going to work and travelling overseas.
My donor is never far from my thoughts
Anyone who has ever had a lifesaving transplant knows they wouldn’t be here today without the kindness and thoughtfulness of someone who made a conscious decision to donate their organs. My donor is never far from my thoughts.
There may come a day when I’ll need another lung transplant. If and when I do, it will be made possible not only by the skilled and dedicated professionals who are at the cutting edge of transplant medicine in Australia, but also - and perhaps especially - by the selfless decision of some anonymous individual who has chosen to be an organ donor.
But for now at least, my first transplant is still serving me very well. My family and I are focused on supporting Aaron as he waits to receive his second liver transplant, which is even more complicated than the first. We don’t know when it will come. All we can do is keep our phones on and try to live each day as best we can and be there for him as he faces the myriad of complications that come with a dodgy liver.
This week is DonateLife week, a good reminder to talk to your family and friends about your wishes for your organs when you die. Registering to be a donor is a great start, but telling your loved ones is vital.
