This book is for Barry,
Kristen, Jacqueline and Eric
and Jasper, Remy and Elodie
‘Love your Lungs’
Idiopathic Pulmonary Fibrosis (IPF) is a devastating disease with average survival rates less than most cancers. It afflicts sufferers with disabling shortness of breath and cough.
The only effective treatment is an organ transplant although donor matching is difficult as the lungs of a patient with IPF are so small and contracted.
Patients often die waiting for a transplant or are removed from the waiting list as they become too sick to survive the operation.
Furthermore, the disease may accelerate unpredictably with patients entering a dangerous spiral into complete lung failure.
The following book chronicles one such patient’s journey from diagnosis with IPF and subsequent transplant process – an operation which would literally occur just hours before death.
This book is a tribute to all donor families across Australia who donate a loved one’s organs or tissues during a time of terrible sadness - the ultimate Gift of Life.
Dr Peter Hopkins
The Queensland Lung Transplant Service
The Prince Charles Hospital
As my life ebbed from the effects of Idiopathic Pulmonary Fibrosis (IPF), my then six-year-old grandson Remy came across the dried bloom of a dandelion.
He took a breath, blew, and watched the delicate seeds disperse, announcing to his father, “I wish Nanny could get new lungs.”
His little face contorted with anxiety. Would his wish come true now that he had talked about it?
Three hours later, we received news that donor lungs had become available.
Miraculously, the lungs matched and I was subsequently transplanted with two healthy lungs.
Remy’s anxiety turned to joy when he was told the next afternoon, “Nanny has new lungs.”
My gratitude for my new life lies with my donor and
his or her family, the team at the Queensland Lung Transplant Service at The
Prince Charles Hospital, Brisbane, and my family, including a little boy who
wanted so desperately for his Nanny to have healthy new lungs.
Organ and tissue donors and their families make the ultimate gift when they give permission for their organs to be transplanted into another human being.
It was towards the end of 2009. I was on the precipice of life.
With only hours left to live after an acute exacerbation of Idiopathic Pulmonary Fibrosis (IPF), I received news that the donated lungs, which had miraculously become available at the 11th hour, were a match and surgery would proceed.
My donor’s life could not be saved, but mine could be with healthy lungs.
It seems incredible that after what was literally a life-saving operation, I was fully conscious nine hours later and ate my first meal 11 hours after that.
I had my first walk while still in the Intensive Care Unit. Two days after my lung transplant surgery I was transferred to a ward.
On day 11, the sun was never brighter, the sky bluer or the grass greener than when I was discharged from hospital and arrived home to start a journey of recovery and renewal.
I celebrated my 63rd birthday 18 days later.
I am inextricably linked to my donor, and his or her family is in my heart.
Recovery to date has been wonderful. It has been a most humbling yet enriching experience.
The process of confronting my mortality has strengthened me.
I was fortunate enough to escape this time around and it has made me very aware of the fragility of life.
The notion of organ donation embracing the extremes of the human condition – life and death – was not new to my family and me.
My father and brother also suffered from IPF and died three months apart in 1990.
Our family all registered as organ donors following their deaths.
Five years later, in 1995, a friend’s daughter received a double lung transplant to save her life from the ravages of Cystic Fibrosis. Happily, she continues to be an inspiration to all who know her.
Ironically, you make the decision to register as a donor on the basis that one day you may be able to give the gift of life.
Perhaps one day, I thought, I would be in a position where my organs could save a family from suffering the grief and anguish we had been through over the loss of my father and my brother.
It never occurred to me that I would be on the receiving end of a donated organ.
It is perhaps fortunate that the issue of organ and tissue transplantation does not cross many people’s radar. It is evidence that they are alive and well.
But tragedies happen, and without having discussed organ donation your family could be placed in the difficult situation of trying to make a decision at a time when they are not able to think clearly.
Apparently, there is a far greater chance of requiring an organ for transplantation than there ever is of becoming a donor.
With this in mind, the Australian Government initiative, DonateLife, and the non-government Transplant Australia are doing a superb job promoting the cause of organ and tissue donation.
You can discover the facts about organ and tissue donation and the need to discuss your choice with your family at www.donatelife.gov.au or www.transplant.org.au.
I look on my lovely new lungs as being not just for myself. They are for my late brother, who ran out of time while waiting for his transplant.
They are also for my two daughters if, God forbid, they get caught up in the familial condition of Idiopathic Pulmonary Fibrosis before treatment or a cure is found.
They have been at the coalface of successful organ transplantation and they have seen the gift of life in its true sense. For them there will always be hope.
In the early days of recovery at home, I would touch my shoulders pretending to reach out to the angels who had saved my life.
In reality I knew who the angels were: my donor and his or her family and the lung transplant team directed by Dr Peter Hopkins at The Prince Charles Hospital, Brisbane.
I recall telling my daughters during philosophical discussions around the family dinner table before they left home to go to university that at the end of the day a woman has to row her own boat.
My father used to put it more eloquently, “Always be a master of your own destiny.” Taking control of my health was a natural flow-on from this philosophy.
I was in a familial cluster of this dreadful disease.
What about the next generation?
There was still no known cause, no cure or treatment for this disease nearly 20 years on from the deaths of my father and brother. To help medical research and find some peace of mind, I took part in a worldwide clinical trial, at The Prince Charles Hospital, for more than two years.
Although results found that I was on the placebo drug, the program helped me psychologically.
From diagnosis in 2006, with the love and support of my family, I stuck to a plan to prepare for any possible future transplant.
Firstly, I sought the best medical treatment available.
I listened to my body, seconded physical and emotional help with Pilates, a dietitian and a masseuse, talked to a psychiatrist and had a surgical procedure called a fundoplication (for severe reflux) that would stand me in good stead for possible transplant surgery.
I know I am lucky to be alive. But I have also been humbled to hear my husband sometimes tell people that I created my own luck.
And despite struggling for oxygen on that fateful night enroute to The Prince Charles Hospital, via ambulance with a paramedic holding one hand and a small teddy bear in the other, I can assure you I was spiritually rowing very strongly.
Everyone who had supported me in this journey was with me in spirit in that ambulance.
We still talk about luck and miracles, but at the end of the day, I thank the Lord for answering our prayers.
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