- Joined
- Mar 10, 2016
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I intend for there to be more than one chapter to this story. It's a true story of life and death and every emotion that comes with it.
I have an idea to create a gift for the Heart and Lung Transplant Team at the Alfred Hospital in Melbourne. I need to talk to our jeweller before I can confirm. My ambition is to create a set of lungs from gold from every state in Australia. I'm not sure how much I'll need, yet to be confirmed, once I have a better idea I'll ask for donations or purchase. I'm absolutely committed to making this donation a reality given the quality of care and compassion expressed by the exceptional people and support services of the Alfred Transplant Team
Over the last 8 months or so my family have been privileged on one hand to witness the true champions of our medical professionals at the top of their chosen profession. On the other hand we've also learnt of some of the health systems short comings existing well beyond the previous 8 months, that's a story for another day.
About 3 years ago my eldest sister, the eldest of our family of 10 children was diagnosed with Pulmonary Fibrosis which is a disease that causes hardening of the lungs, ultimately being terminal without a transplant. Both my mother and uncle, her brother passed away from the same disease, it's not hereditary (apparently) just an uncanny circumstance of unfortunate coincidence.
In March my sister was assessed and given a palliative diagnosis. We questioned the qualification by asking for her case to be assessed by the Alfred Hospital heart and lung transplant team. We were told her advanced diagnosis meant she had days, weeks or at best months to live. From March to May we spent many days hours not knowing if she would survive all the while being re assessed with a further 2 palliative diagnoses. I contacted many people (some family) in the health profession from Neurologists to extremely highly qualified nurses asking for advice and if they knew who I should contact to reach the Alfred Transplant team. Everyone I rang gave me their best advice and their best contacts which unfortunately didn't provide a conduit to the Alfred transplant team. I knew of a neighbour who I'm not in regular contact with who is a recipient of a double lung transplant for Pulmonary Fibrosis, after a few tears and beers I sent him a message asking if I could ask some questions regarding his experience of his transplant. It turned out he shared his experience and actually had the direct number to the Alfred Hospital Transplant Team.
Just yesterday I received a call from my brother in-law letting me know my sister is now officially on the transplant list
It is such an emotional experience words and emojies just don't cut it. Knowing my sisters only chance of survival (she just turned 63 on the 17th of November) will come at the expense of another family's grief is terrifying. Through all of this my family has been concious of the fact my sisters health is fragile, we've expressed our concerns of the risk associated with a transplant not being successful and maintained a belief we would never entertain any organ donation be wasted if my sisters condition posed any such risks.
With yesterday's news we feel like we won the lottery 100 fold.
I have an idea to create a gift for the Heart and Lung Transplant Team at the Alfred Hospital in Melbourne. I need to talk to our jeweller before I can confirm. My ambition is to create a set of lungs from gold from every state in Australia. I'm not sure how much I'll need, yet to be confirmed, once I have a better idea I'll ask for donations or purchase. I'm absolutely committed to making this donation a reality given the quality of care and compassion expressed by the exceptional people and support services of the Alfred Transplant Team
Over the last 8 months or so my family have been privileged on one hand to witness the true champions of our medical professionals at the top of their chosen profession. On the other hand we've also learnt of some of the health systems short comings existing well beyond the previous 8 months, that's a story for another day.
About 3 years ago my eldest sister, the eldest of our family of 10 children was diagnosed with Pulmonary Fibrosis which is a disease that causes hardening of the lungs, ultimately being terminal without a transplant. Both my mother and uncle, her brother passed away from the same disease, it's not hereditary (apparently) just an uncanny circumstance of unfortunate coincidence.
In March my sister was assessed and given a palliative diagnosis. We questioned the qualification by asking for her case to be assessed by the Alfred Hospital heart and lung transplant team. We were told her advanced diagnosis meant she had days, weeks or at best months to live. From March to May we spent many days hours not knowing if she would survive all the while being re assessed with a further 2 palliative diagnoses. I contacted many people (some family) in the health profession from Neurologists to extremely highly qualified nurses asking for advice and if they knew who I should contact to reach the Alfred Transplant team. Everyone I rang gave me their best advice and their best contacts which unfortunately didn't provide a conduit to the Alfred transplant team. I knew of a neighbour who I'm not in regular contact with who is a recipient of a double lung transplant for Pulmonary Fibrosis, after a few tears and beers I sent him a message asking if I could ask some questions regarding his experience of his transplant. It turned out he shared his experience and actually had the direct number to the Alfred Hospital Transplant Team.
Just yesterday I received a call from my brother in-law letting me know my sister is now officially on the transplant list
It is such an emotional experience words and emojies just don't cut it. Knowing my sisters only chance of survival (she just turned 63 on the 17th of November) will come at the expense of another family's grief is terrifying. Through all of this my family has been concious of the fact my sisters health is fragile, we've expressed our concerns of the risk associated with a transplant not being successful and maintained a belief we would never entertain any organ donation be wasted if my sisters condition posed any such risks. With yesterday's news we feel like we won the lottery 100 fold.
It's hard to find the words to describe how we as a family are feeling right now, happy is an understatement. 
