Chronic illness is all about waiting.
Being an organ transplant recipient is not for the faint-hearted. It takes commitment, psychological strength, support from family, friends and potential recipients are carefully selected to ensure the best chance of survival for every donation.
Tragically, some potential recipients wait patiently for years for a phone call that never comes. For others who are blessed to receive that call, they can be turned away because they aren’t the right match for the available organ. The organ donation and potential recipient must be completely compatible for a donation to proceed. Plus, recipients need to keep themselves healthy enough to have surgery at a moments notice. Even the strongest of people can become isolated, frustrated, depressed and feel like giving up.
While on waiting lists, quality of life begins to decline as many are hooked up to machines and/or taking copious amounts of medication just to stay alive. It’s an enormously difficult way to live and in reality it can happen to anyone.
After an extensive operation to undergo the transplant there is so much which can go wrong. When a foreign object of any description enters your body it naturally attempts to repeal it any way it can. Think of how hard the body works to rid itself of a simple splinter? Now image a double lung transplant, a heart or set of kidneys! It’s a scary and exciting time for the individual and their loved ones.
To reduce the bodies natural tendencies to rid itself of the donated organ(s), the recovery period is a time when recipients must strictly obey all guidelines by medical specialists. This includes physiotherapists, dieticians, transplant surgeons and nurses. They also have access to support workers. Everything from the food they eat, their medication regime, their activities and behaviors, who they can have contact with and where they can go is all carefully monitored.
Then there’s the emotional side of a transplant. Children are exceptionally resilient, but once the limitation they had experienced are removed, it can be difficult for parents to hold them back while they recover. Plus, recipients grow accustomed to lugging around life saving apparatus or being hooked up to machines, like oxygen tanks or dialysis machines.
After the transplant, these are all removed and are no longer a significant part of their life. They can often feel exceptionally vulnerable without their life support which has literally kept them alive. It’s understandable that the first few months can be very strange and some people experience a significant amount of anxiety.
Also, people with deteriorating health often start to plan for the decline of their health and lifespan. Hope can be difficult to sustain for prolonged periods of time. Plus some take on the fact that someone needed to die, so they could have their organs to survive. Psychologically, recipients have enormous adjustments to make throughout the entire experience.
A transplant significantly changes the lives of the recipient and alters the life of those around them. For adults with partners, they can look forward to a new, exciting, fun filled life together. All their plans can turn into realities and the dynamics of the relationship can shift. After the recovery period, recipients no longer require assistance and the partner is no longer required to be a carer. This is yet another adjustment they need to make together to move forward.
Then there’s the family. Relatives of recipients often take on a caring role and need to cease employment until after the recovery period. The recovery period is around 12 months, with the first 3 months being the most nerve wrecking and significant. Sometimes they might feel like their lives are on hold while everyone waits.
Receiving an organ donation is therefore the ultimate gift a person can give. It stretches much further than the individual recipient and has the capacity to change a great many lives. Australian authorities have provided funds, training, staff, facilities, strict selection criteria to ensure each precious donation has the best chance to save the life of another and make the greatest impact possible.
Finally, if you register as a donor, you need to discuss it with your family. They will have the final say, regardless of your registration status and must consent to the donation. Make the next family gathering your opportunity to discuss this life saving opportunity, so your wishes can be realized if you become a potential donor.
If you want more information on organ donation, head to http://www.donatelife.gov.au/
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Did you know that regardless of your registration status, each family of a potential organ or tissue donor must consent to the donation? Plus, not every donor gets to donate. There are exceptionally strict conditions which must be met to harvest organs. It’s marginally less for human tissue.
In 2013, only 1 per cent of potential candidates who died in hospital actually met the criteria. This left Australia with a mere 391 suitable organ donors for our entire population. With approximately 1500 Aussies queuing for an organ transplant at any given time, these figures indicate we desperately need more donors to save lives. Registration is reported to be rising at around 75 per cent of the population happy to donate, but we still need to do more.
The Australian Government Organ and Tissue Donation Authority, reported that only 69 per cent of registered donors have told their families of their potential donation. We really need that figure to rise. When potential donors became available in 2013, only 51 per cent of their family members knew what loved ones wants. Of these, the vast majority (94 per cent) of the families agreed to the donation. When the decision was left to family without knowing, the figure dropped substantially to 60 per cent.
Enough with the stats right? It’s enough to make your head spin. What these figures indicate is that it’s imperative for families to talk about organ donation. We often talk about a whole heap of other crap, like what Aunty Joan did at the last family party, but important stuff like this often gets avoided. In reality, if your family doesn’t know what you want, there is a significant chance they will decline the donation and your opportunity to save up to 10 lives will be sadly lost.
Lucky for us, Australia is a world leader in successful transplants. It’s not just about recruiting donors either. National, state and territory government’s have initiated ‘A World’s Best Practice Approach to Organ and Tissue Donation for Transplantation’ reform. The aim is to increase community engagement, awareness and registration rates, plus improve transplant success through stringent selection criteria and vital funding for medical professionals, post-donor care and facilities.
The federal government has allocated additional funds to secure dedicated specialists, like surgeons, nurses, hospital based transplant specialists and support service for both recipients and donor families. Donor families receive support regardless of their decision to donate or not. It will be a particularly difficult time and significant research has gone into providing the best outcome for both the donor family and individual organ recipients.
After a transplant, recipients receive assistance while they undergo 3 or more months of intensive recovery. For this time, recipients need consistent support as a mass of medications are introduced, including poisonous anti-rejection drugs. Recipients may experience potentially life-threatening side effects from medications and therefore potential recipients without 24/7 support for this period are ineligible for a transplant.
This may seem harsh, but the success of the transplant depends on the recovery period. With such a low availability of donors, specialists want to ensure only individuals with the best chance of survival receive these valuable organs. They are aware they may not be able to save everyone’s life so they must base their decision on these types of variables. It’s the ultimate gift of life and no-one wants it wasted.
Lastly, if you do decide to donate, be aware that your organs will be harvested with the utmost care and professionalism and your family will be thoroughly supported. If you’d like to know more about recipients of organ donors, we have an upcoming article, A day in the life of an organ transplant recipient. I’m blessed to have a family member who has recently an organ transplant and fully comprehend the precious gift which has been received.
It is a decision which changes far more than an individuals life and impacts everyone they associate with, including the wider community. Who knows, one day it might be you on the waiting list and someone’s donation just might save your life. Surely that’s worthy of a 5 minute family conversation?
If you want more information on organ donation, head to http://www.donatelife.gov.au/
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