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The gift of life Australians should be made aware that we have one of the lowest rates of organ donation in the Western world. BY JACKIE O’NEILL
Come February 2001, however, the HIH debacle burdens householders all around Australia, the Kliousis family among them. In July 2001, there still being no progress on their proposed new family home, the Kliousis clan relocate to rented premises. Intuition About this time, Michelle notices Theo (10) is unusually off-colour. Three consultations later, with three different doctors, only flu or virus symptoms are diagnosed. However, Michelle won’t accept their opinions. Theo has always been a strong healthy boy. The family GP respects Michelle’s instincts and subsequently orders a chest X-ray at Port Base Hospital in case pneumonia is present. A heart problem is identified. Within a day, Theo is transferred to Westmead Childrens’ Hospital, Sydney, and cardiomyopathy is confirmed. This is damage to the heart which can lead to many serious problems: embolism, obstruction of an artery by a clot, or, in Theo’s case, an enlarged heart. Theo spends one month in the Sydney hospital while efforts are made, unsuccessfully, to establish the source of his condition. The results suggest perhaps there is a mutated gene. The possibility of a transplant is discussed. But, happily, Theo stabilises and is sent home. The routine of monthly check ups in Sydney begins. (Their new house was finally commenced in August 2001.) Turmoil Christmas 2001 comes and goes. In January 2002, Theo travels to Melbourne with his mum and dad for assessment. Not everyone qualifies to be on a donor recipient list. Nick and Michelle are subjected to psychological assessment by the transplant board to determine if are worthy parental candidates. Theo endures further medical tests and is ultimately placed on the transplant list. February – the second day back at school in 2002 – and Theo collapses. That night Theo is airlifted to Westmead again. For a particularly worrying six-week period Nick and Michelle wonder will Theo make the transplant? Will a heart become available? Due to his size and age, Theo is able to accept the heart of a person up to 60 kg. This raises their hopes. This second stint in Westmead is entirely in the Intensive Care Unit (ICU). There is concern whether or not Theo is strong enough for surgery. Finally, one Wednesday in March the call comes – a suitable heart is available! The Royal Flying Doctor Service airlifts Theo and his Dad to Melbourne. Theo is in heart failure. He is prepped and placed on life support while the donor organ and the accompanying medical team is flown into Victoria. The transplant takes place on Thursday. Surgery lasts for more than six hours. Then Theo lies in a coma in ICU for seven long days, attached to about 30 drips and a ventilator. The new heart does not respond immediately. It is bruised and swollen due to transportation and all the handling. A bypass machine supports Theo, giving the replacement heart a chance to rest and for the swelling to reduce. There is one extremely scary night for Nick and Michelle, will Theo live? As medical staff constantly monitors his progress, their son lies with his chest still open for three agonising days in all. Eventually the swelling abates, the new heart starts functioning, Theo’s chest is closed, and artificial assistance is gradually decreased and finally removed when Theo is able to survive independently. The parents’ daily routine is established: breakfast between 7.00 and 8.00 am; visit Theo’s ward by 9.00 am; stay by his side until lunch; return to spend the afternoon by the boy’s bed; an evening meal about 6.00 pm; then resume their vigil until around 10.00 or 11.00 pm each night. Once the danger period (8 days in ICU) has elapsed, there follow 14 days (in the cardiac ward) observing their son’s improvement and supporting and encouraging Theo during his recuperation. The prolonged bedridden period led to loss of muscle, thus Theo requires assistance initially to walk. His goal is to climb a flight of stairs before the specialists will discharge him. The family stay with Theo in Melbourne for a further two months as he undergoes physiotherapy. In June 2002, they all return home for good. And, happily, they move into that new house in July 2002! How do families cope? Logistically? There were many trips between Port Macquarie, Sydney and Melbourne for medical check ups, visits to Theo and to attend to the family's needs back home. During those lengthy hospital sojourns, Nick and Michelle stayed in parental accommodation at the hospital. Ronald McDonald Houses also provide rooms for this purpose. The transplant team in Melbourne owns two semis not far from The Royal Children’s Hospital to assist parents requiring long-term accommodation. Financially? All the hospital treatment was fully funded. Michelle’s flight to Melbourne for the transplant was financed by a Port Macquarie business. Nick and Michelle’s employer was fantastic. All available leave was granted to both parents, and additional paid leave was also extended to Michelle. Their jobs remained secure. Emotionally? This life-threatening event was rather disruptive – to the family and their social lives, to schooling and work! One nurse in the early stages of treatment suggested that the procedure would either make or break the family. Fortunately, this family has, in fact, been drawn closer through this gruelling encounter. Local support was strong. The younger children took kindly to grandparental supervision during the frequent absences of Mum and Dad. True friends were recognised and friendships strengthened. Ironically, Michelle has been on the blood donor/bone marrow donor/organ donor list since she was 18 years, never ever imagining that she or her family would be donor recipients. In order to protect the identity of donor families, the date and whereabouts of a donor’s death is not revealed to recipient families. Yet one day Michelle will write to thank the anonymous donor parents for their gift of life. She is painfully aware of the grief that family has experienced. Today Nick and Michelle are now more concerned about quality of life. Theo’s treatment is simply that, it’s not a cure and no guarantees come with surgery. Theo may need another transplant later in life. Yet organ donation is appallingly low in Australia. On average there are only 12 paediatric organ donations annually in Australia. They learned, too, that the medication which kept Theo alive prior to the operation was unavailable ten years ago. How lucky are Nick, Michelle and their family! Theo lacks white cells and his immunity is low. Though he feels fine, the anti-rejection medication attacks his kidneys. Though his condition has stabilised, down the line Theo could also require a kidney transplant. If so, will one be available? There is no cure for kidney disease. Dialysis and transplantation are the primary treatment options, and over 13 700 Australians are currently being kept alive by one of these means. History of Organ Donation in Australia The first transplant operations commonly performed in Australia were corneal transplants, which date from the 1940s. However, the first organ transplants began around 1963 after medical advances had made kidney transplantation an effective treatment. Since then, transplants of other organs, such as the heart, liver, lungs and pancreas have also been developed into effective treatments. To corneal transplants have been added transplants of other tissue, such as bone marrow, heart valves, bone and skin. Organ transplants and waiting lists While tissue can be taken from the body after the heart stops beating, the requirements for organ donation are more restricting, and few people die in circumstances that allow them to become organ donors. Organ donation is usually only possible in cases where a patient in an intensive care unit is determined to have suffered brain death, while their heart/lung function is being maintained artificially. Some health conditions rule out donation, and age can also be a consideration, although in the case of kidneys and livers, there is effectively no age limit on donors. However, waiting times can vary greatly for individuals, and some people die before organs become available. It’s a sad state of affairs that Australia has one of the lowest rates of organ donation in the western world. As at January 2004 there were 1824 people waiting for a transplant. Average waiting times for each transplant in Australia at 2 January 2004 were kidney 3.8 years, heart 1.2 years, liver 1.1 years, lungs 1.4 years, pancreas 1.5 years. Register to be an Organ Donor Don’t be a stick in the mud. Consider making more lives easier when your time is up. Age limits are not a consideration, as the condition of your organs will be assessed at the time of your death, regardless of your age. People up to 90 years of age may donate some tissues. It takes less than two minutes to register on line! • Try www.hic.gov.au/organ • Visit any Medicare office to collect a registration form, or • Telephone 1800 777 203 to request a registration form be sent to you Further links/emails to pursue: • Australians Donate www.organdonation.org.au • Kidney Health Australia www.kidney.org.au • NSW www.lifelink.redcross.org.au • ACT ACTOrganTissueDonationService.@act.gov.au • VIC/TAS www.organdonor.com.au • Queensland www.health.qld.gov.au/queenslandersdonate • South Australia organ.donation@dhs.sa.gov.au • Northern Territory helen.stewart@nt.gov.au • Western Australia www.donatewest.health.wa.gov.au/ |
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Meet Nick and Michelle Kliousis of Port Macquarie. Imagine it’s January 2001. While their new family dwelling is to be constructed, Nick and Michelle and their four children – Theo (10), Kyle (9), Ebony (7) and Olivia (5) – move in with Michelle’s parents. Both Nick and Michelle are employed by one of The Big Four banks in town (Michelle only part-time) and the grandparents assist with childcare. The future looks rosy. |