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I am a living altruistic kidney donor. My name is Anthony Parr from Tasmania and I’m pleased to share my short story of why I felt so strongly about donating a kidney to a stranger. I have carried my organ donor card in my wallet for some 25 years and never gave it a thought about living donors until 2012 when I was reading about organ donors on the internet, I noticed a story about living donors. I fell in love instantly and never had one doubt. Within 2-3 days I saw my GP and then went to my local hospital for an interview and testing which started a week or so later.
Seventeen months later I was still a long way from donating. The level of suspicion and caution was more than I expected, I was told most potential altruistic donors were not accepted. I felt flat and was sure that my chances of donating in Australia was minimal. Seventeen months of testing along with a lack of interest on the hospitals part was more than I needed. I went home and put plan B into effect. Leaving Australia to donate a kidney was my only option. I made contact with a man in the USA after some research and in a very short time I sent a blood sample to a major hospital with a long history in transplant surgery. I was a match and a 62 year old gentleman was about to have his life changed forever.
On the 4th January 2013 I departed Australia for the USA. My testing started on the 8th January, which involved 3 days testing. On surgery day the 16th January 2013 my dream of donating a kidney was now one of the most happiest days I can remember. The stranger I donated to was now my friend and my joy for this man and his family will never leave me.
It is now over 2 years since my kidney donation and its my great pleasure to wish everyone considering a living donation all the very best with this important decision. To all who have lost a love one and yet gave to others this great gift of life through organ donation,you are a great example to me that I should be blessed with good health and share it with a sick person as a living donor.Thank you for helping me with my decision.I am a better person for it.
My beautiful son was only 4 days short of his 24th birthday when he tragically lost his life as a result of a motorbike accident. He lived life to the full and always loved to help people in need. It is only fitting that he was able to continue help people as a result of his passing. On the day of his birthday I received the wonderful news that he had saved 6 people’s lives with the gift of 7 of his organs. It brings me great comfort to hear our the recipients are going when they do write. Stewart volunteered twice to Uganda and helped so many people over there. I had the opportunity to go over there after he died and volunteered too. I was able to meet some of the people whose lives he touched and it really inspired me to want to follow in his footsteps and continue to help people in need. I also like encouraging families to talk about organ donation and to consider registering. We have no control when it is our time and it is important not to put it off. Below is the letter I shared with his recipients:
Dear Organ recipient,
I am the mother of the beautiful young man who donated his organ(s) to you. I just wanted you to know that it is one of the very few things that have given me strength and comfort in knowing that in some way that my son lives on through you and that through his donation that he has saved so many lives. My son gave fully of himself when he was alive and then gave the gift of life when he passed on.
My beautiful son had dedicated his life to God when he was only in his teens and asked God to use him and he trusted that He would take care of all his needs. He spent a lot of time on missions volunteering to help those in need and also had a sponsor daughter who he had the opportunity to meet. He was on a low wage as he was an apprentice but yet he still donated each month to three worthy charities who also do a lot of work to help people in need. He would work long hours at work and would then go out to people’s homes to fix things for them at no cost. Even on the day he had his accident he had helped his boss, and then fixed the tiles on the roof of the house where his fiancé was renting to stop rain from coming through and then went under the house to fix some plumbing for the owners at the house where he lived. He did all that on a Saturday when most people would be resting.
My beautiful son wanted to make this world a better place and he achieved so much in the short time he was here. I wanted to share a poem I wrote about my beautiful boy:
Every night I cry
Will the tears subside?
Your cheeky smile
It stretched a mile
You shone a light
Made the world so bright
You leant a hand
But had no demands
Your heart was pure
Always had a cure
I am so proud
Want to scream out loud
A love so rich
You will be sorely missed!
Please know that it means so much to me that my son helped save your life and that a piece of him lives on in you. I pray that you will continue to live a long and healthy life and am so grateful that you no longer have to suffer from your illness.
God bless you.
I hope reading this will inspire many people to register! 🙂
We lost our son Matthew New Year’s Day 1995 after a short illness. He was seven months old. We agreed to donating what was needed. But in our grief this was left open ended. What did they take? More importantly did he help save another child life? The children’s hospital Melbourne didn’t enlighten us. I think it would have helped in the healing process. Matthew would have been 21 years old yesterday. I hope something of him is doing wonderful things for someone else.
My eldest son Barney was a typical boy, cheeky and headstrong, long and lean like his dad, Rob. He played soccer. He was into collecting Pokemon cards and playing Stars Wars computer games. He was learning to surf and loved being in the water.
Barney was nine years and 22 days old when he died. He fell ill with Influenza B and suffered a febrile seizure whilst in the bath.
Rob performed CPR while I phoned the ambulance. Together they managed to get a pulse, but unfortunately they couldn’t get him to breathe on his own.
Barney was kept on life support for two days before his organs began shutting down and he was declared brain dead. Rob and I are registered organ donors. So when we were asked if we would consider donating Barney’s organs, Rob and I just looked at each other and said “Yes, that’s exactly what Barney would want.” Besides if Barney was in need of an organ to keep him alive we would have gratefully accepted one.
Barney’s lungs, kidneys and liver saved the lives of four very ill people. An adult, two teens and a child of similar age to Barney. Unfortunately there was no compatible recipient for his big, strong, beautiful heart (that never missed a beat after they got it going again) but it was donated to research along with his corneas. All research conducted adding to the body of knowledge, to help save lives in the future.
I don’t think you ever get over the death of a child. The pain becomes an ache that never leaves and it doesn’t get any easier. You just somehow learn to live with it.
We still have Sam, Barney’s younger brother, to live for, and we now have a new baby daughter Lucy, and an even newer baby son Ben, to tell all our Barney stories to.
We have recently heard from one recipient, a teenager who received Barney’s lungs. She is living a very happy, healthy and full life. She expressed extreme gratitude for her organ donor and donor family. We pray for Barney’s other recipients everyday and hope they might one day find the courage to contact us.
In the mean time, we thank God for the Gift of Barney and for Barney’s Gifts.
Andrew Kane 17 years young.
07/04/1988 – 24/12/2005
HI my name is Lynne,
Back in 2005 My husband Laurie & I got the worst phone call of our lives. It was to say our son Andrew just 17 years old had been hit by a car. His work mates had run back to his workplace and they were the ones who called us. He was just 10 minutes from home, crossing the road where he shouldn’t have.
That phone call was the worst in my life. We rushed down to the accident site to see the ambulance take off with our son in it. We went straight to the Alfred hospital in Melbourne approx a 40 min drive. They would not let us see him but they asked us to give any details that may describe him. This is every parents nightmare as you go blank to think of anything. The child you see every day and yet you find it hard to come up with distinguishing details that will make him different from everyone else, not knowing how he looks after an accident if he is disfigured etc.
It felt like hours passed before we are allowed to see him. He was sent up for surgery due to a shattered lower leg, broken pelvis, ruptured spleen and other injuries I just could not take in at the time. The ER doctor told us there was a 3% chance of survival. My heart dropped.
I approached the nurses when we were waiting, to state that Andrew wanted to be an organ donor.
Time is still confused in my mind as to how and when the next steps happened. Within the next 24 hours Andrew was pronounced brain dead. The Trauma doctors spoke to us and said they were aware Andrew was noted as a donor and would then put in the call to the donor team.
The LifeGift – now known as Donatelife – person came to talk to us and fill in the relevant forms. There is a blur here but we agreed to donate any & every thing that was possible. Andrew donated his Liver, Heart, Kidney, his pancreas went to research and leg veins into storage for later use.
We have received letters from the 3 recipients and know that Andrew gave them a new life.
My name is Philippa Waldron from Perth WA – I lost my wonderful husband Peter very suddenly after 37 happy years of marriage in 2009 – he was fit, strong healthy and aged only 61. He was on life support for 2 days after having suffered a brain aneurysm and always said he wanted to be a organ and tissue donor if the time ever came. We were planning retirement and trips, he was going to walk his only daughter down the red carpet in a castle in Spain when she married, her now lovely Spanish husband. My married son had a beautiful boy, Peter had many plans for his grandson, showing him how to use every tool in his shed. He never got to see his new spanish granddaughters.
He left too soon.
Despite my personal tragedy, my hero husband has given most precious gifts of life to others and their families and this is a great comfort down the years – it is just so important to talk about donation within families and every donor family can be very very proud of their loved ones.
HARRISON, Ben – 10yrs
29/09/82 to 18/05/93
from his best mate
Graham Harrison (Father)
Life-support machines winked and beeped in the cardiac intensive care unit at the Children’s Hospital in Camperdown, Sydney, as I hunched over a bed, gazing numbly at the unconscious figure of my ten-year-old son, Ben. Naked except for a sheet covering his lower half, his body lay connected to a maze of tubes. A ten-centimetre-wide strip of plaster ran down his chest.
As I had already done countless times that night in early autumn, 1993, I vigorously massaged his hands and feet, trying to transfer some of my strength to him, willing him to keep going. Come Ben, you have to pull through, I thought. Yesterday my precious son had been healthy. Now I struggled to comprehend he was battling for his life – and seemed to be loosing. How could things have gone so wrong so quickly? I wondered.
Ben Stuart came into my life on September 29, 1982, in Sydney Adventist Hospital. As my wife, Elayne, and I joyously inspected our new baby, I counted my blessings. We owned a spacious house in a leafy Sydney suburb. I enjoyed a challenging job. We already had a beautiful, 18-month-old daughter, Kyla. Our three-kilo son, lustily bellowing at the bedside, was the perfect addition to our family.
An inkling of trouble came when a nurse placed Ben on a trolley and inserted a tube into his mouth to suck fluid from his throat, it did a U-turn and came back out. She frowned, and called the doctor.
An examination revealed that Ben was a TOF baby. “Your boy has a tracheo-oesophageal fistula,” the doctor explained. His oesophagus is joined to his windpipe.” Hour later, after Ben had been transferred to the Children’s Hospital, we waited while the upper portion of his oesophagus was surgically detached from his trachea, then stitched to the intact bottom half of the oesophagus. By 2 a.m., he was recovering.
Hugely relieved, we thanked God that our son had pulled through. Other families were not so blessed. In the next bed a couple lost their five-day-old daughter. Witnessing their anguish, Elayne and I vowed that if we ever were in a position to help, we would do what we could to alleviate others’ suffering – including donating each other’s organs.
Tests later revealed that a number of things in Ben’s development had misfired. He had an extra rib, his kidneys were joined by a common wall and his fifth vertebra was misshapen. The abnormalities were nothing to worry about, the doctors assured us, though Ben might eventually need surgery to prevent a sideways curvature of the spine. He should not play contact sport, or do anything that might hurt his back.
One evening three months later, I heard Elayne scream from Ben’s bedroom: “Graham! He’s not breathing!” I rushed in. Ben’s face was blue. I restarted his breathing with mouth-to-mouth and by the time we arrived at hospital, he was sleeping peacefully on Elayne’s shoulder.
A bronchoscopy showed that Ben had softer-than-normal cartilage round his trachea, causing it to narrow when he inhaled. Doctors decided to open his chest and suture his aorta, the main artery from the heart, to his breastbone. “This will take the pressure off the trachea, allowing the cartilage to strengthen as he grows,” the surgeon explained.
From then Ben was blissfully normal. As he grew, he became known to our neighbours as a free spirit for ever on the move. He routinely abandoned his homework to collect frogs’ spawn from our fishpond, swing from trees or play in bushland behind our home. Never once did his delicate back slow him down. One weekend, while helping out at a function at his school, I heard “Look Dad!” from behind me. Ben was balancing on the crossbar of the football posts three metres above the ground, wearing a gap-toothed grin.
Ben showed similar independence in most things. I once brought him a model-plan kit, hoping we could build it together. He refused to let me help, labouring over the model every night for two weeks. The completed jet was lopsided and encrusted with glue, but it was hard to tell who was proudest when we installed it on his bookshelf.
Noisy at home, Ben was often tongue-tied and shy around strangers. His most enduring mate, Calum Martin, lived round the corner. Calum’s dad found Ben sitting outside their house one Sunday morning. Ben had told him he had been waiting for his friend to emerge for more than an hour. “I didn’t like to wake anyone,” he explained.
As Ben approached his adolescent growth spurt, our orthopaedic specialist warned that he could experience problems with his back. Sure enough, in March 1993, x-rays revealed a noticeable curvature. If we don’t arrest it,” said the specialist, “he will have a server, progressive deformity.” The operation would involve inserting a bone graft from one of Ben’s ribs into the vertebral column to stop his back from bending markedly to one side as he grew. Surgeons would gain access through his chest, opening the breast bone.
Elayne and I realised surgery was necessary but worried nevertheless. At night, when the kids were asleep, we discussed it, comforting ourselves with the thought that Ben had already survived two major operations without problems.
Ben seemed to accept the planned surgery as a challenge. Even when the orthopaedic surgeon explained that he would need to wear a plastic head-to-waist cast to keep his spine rigid for three months after the operation, Ben did not complain. Instead, he cheerfully donned the cast for a couple of hours each day to get used to it, then tried sleeping in it. He even wore it proudly to school, like a suit of armour.
Only letter did I discover that Ben was secretly frightened. In a school exercise book, he had drawn an operating theatre and masked doctors with oversized syringes. He wrote: I wish I didn’t have to go to hospital.
On the day before the operation, I stood in our driveway as Elayne left for the Children’s Hospital with Ben in our station wagon. He was wearing a yellow cap and a new jumper, big enough to fit over his cast. He waved and yelled “Bye Dad.” The neighbourhood kids waved back as the car pulled away. (That was the last time I saw him awake).
The surgery was scheduled for 8 a.m. and Ben was not expected in the recovery ward until at least 11 a.m. After spending three apprehensive hours at work, I drove to the hospital to keep Elayne company. As I entered the waiting room, I sensed something was wrong. “There’s been a complication,” Elayne said.
When the surgical team had attempted to move aside Ben’s aorta – sutured to his breastbone ten years before – a small hole opened up, spurting blood. A surgeon plugged it with his finger, but with no room to apply stitches, he tried to detach a fraction more. The hole began to tear, now requiring two fingers to stem the flow.
Technicians started a heart-lung machine to pump blood through Ben’s arteries and veins and “breathe” for him. But before it was fully operational, Ben’s blood pressure plunged, depriving his brain of oxygen for between eight to twelve minutes.
As Ben lay in intensive care, I forced back the despair and tried to think positively. Everything will be all right, I told myself. After all, Ben was an old hand at medical emergencies.
But the brain is the most fragile of organs. Starved of blood, the capillaries feeding it begin to break down. When blood flow is re-established, the weakened capillary walls begin to leak. Now, as blood and fluid leaked into Ben’s brain, pressure in his skull built up. At 11 p.m., I urged Elayne to go home to get some rest for the next day. Kyla, safe with relatives, would also need her. Meanwhile, I tried to sleep in the parents’ hostel. At 1.30 a.m. the phone rang. The registrar, Dr Scott Ferguson, asked me to return to the ward. Ben must be coming round!
I hurried there, but the news was not good. The pressure in Ben’s head was increasing. Ferguson gave him drugs to contain it, and for a while his signs returned to near normal. Then the pressure crept up inevitably. At 3 a.m. Ferguson administered more drugs. By 5.30 a.m., I was still desperately rubbing Ben’s hands and massaging his feet. All I wanted was to hug him, to make him better. Why did I send Elayne home? I need her with me! At that moment, a social worker materialised. Like a guardian angel, she provided the support I needed. She said nothing, just put her arms round me as we cried together.
I was losing my son. I saw it in his eyes whenever the nurse cleaned them. There was nothing there – no sparkle, no life. It is not fair! My mind raged. I haven’t taken him bush-walking, or camping in the mountains, or all the other things a father plans with his son as he grows older.
At 6 a.m., Ferguson took me aside. He had done everything possible, he gently explained, but the gauges indicated that Ben’s brain was dying, although further tests would be needed to confirm this. I called Elayne. “Hurry, they say we’ve lost him.” We cried, then hung up. Back in the ward, several nurses were crying.
Medical technicians arrive at 9 a.m. to carry out an EEG. They placed a cap on his head, connected by a tangle of wires to a machine beside the bed. Of the ten gauges, only one moved to indicate brain activity and this very slightly. Despite my horror at the thought of losing him, I prayed for Ben to go in peace.
When another test later in the morning showed no blood circulating to Ben’s brain, the doctors took us into a small room. The medical technicians returned again to carryout a second EEG. This time there was no movement recorded from any of the gauges. At 12.30 p.m., the doctor confirmed our greatest fear; “Mr and Mrs Harrison, I have to tell you officially your son is brain dead.”
Elayne and I were silent, drained. As we looked at each other, I thought back to the time when Ben was first in hospital. Even in my grief, I knew what I wanted to do, and Elayne seemed to read my mind. At the same moment, we said; “We want to donate Ben’s organs.” The doctors looked surprised. “We’re in such pain,” I explained. “If Ben’s organs can help alleviate someone else’s suffering, its the right thing to do.”
At 4.30 p.m., after an independent medical team performed further reflex tests to confirm Ben’s death, I signed papers allowing my son’s organs to be donated. Later, the Australian Red Cross transplant co-coordinator described the operation to remove Ben’s heart, lungs and kidneys, stating the transplant team would treat his body with the utmost of respect. After spending the night in the hostel, waiting for the transplant team to assemble, Elayne and I accompanied Ben to surgery for the last time. Keeping pace with the trolley, I held his hand as a doctor pumped air into his lungs with a hand-held respirator, the only device keeping the rest of his organs alive. As he was pushed through the swinging doors, Elayne and I turned away.
For four hours, we walked in silence round the hospital grounds. Finally, a nurse escorted us to a “quiet room.” Ben lay on a bed, dressed in his green flannel pyjamas, his hair neatly combed. I picked him up and sat with him on a sofa, where Elayne and I cradled our son in our arms. For an hour-and-half, we stroked his hair and talked to him for the last time.
On May 21, 200 people attended Ben’s funeral – family, friends, colleagues, neighbours, teachers, school mates. I am not a very religious person, but as I listened to a neighbour reading Ben’s eulogy, I was overcome by a strange sensation. Starting from my feet, a tingling slowly rose through my body, leaving me with a feeling of peace.
In August, I received a letter through the Australian Red Cross from a middle-aged man who suffered from severe kidney disease; “The wonderful gift your family has given me has opened the way to a new life that I value and hold precious every day……There seems so little to offer for such a fantastic opportunity, but when all other words are swept away, only two remain for ever – thank you”
By the time I had finished reading, tears were running down my face. Here was living proof that Elayne and I had made the right decision. Later that year, I received another letter, telling me that a young Melbourne girl’s life had been saved by Ben’s heart and lungs.
Post Script following the year’s after this story was published
In the year’s that have followed the publication of Ben’s Story, Elayne and I became heavily involved with; Transplant Australia, went on to meet David Ridoutt (Ben’s kidney Recipient), and finally Sharelife Australia – in an effort to motivate the public and change the medical approach to organ donation and transplantation management. Eighteen years after Ben’s passing we have since had to farewell David who died in 2009. We also continue to assist Sharelife Australia in overcoming bureaucratic hurdles that continue to impede the significant change required, to enable Australia to achieve world’s best practice so that we can achieve transplantation rates of 90 per million of population. As of 2012, Australia is slowly improving with a current rate of 44 transplants per million. If the community has the will, this target is achievable.
I have also become involved with a new dynamic donor family group called Donor Families Australia headed by Bruce McDowell. I would recommend all donor family members interested in communicating with other donor members and/or wishing to become more pro-active within the donor family area of organ donation and transplantation to register with us.
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