Christmas is a time of joy, giving and charity; the New Year holiday is a time for celebrating life, for renewal and revitalisation. So, it is in this spirit that there is no time more fitting to raise the issue of organ donation.
Christmas is special for me, personally. It was this season for me three years ago, that threatened to be the last time I would be together with my family. Fortunately, I am still here because of the generosity of an organ donor, and now in this season, I get to celebrate these times in notable health and happiness.
As a double lung transplant recipient, I have my world back now, after so very nearly having it taken away from me due to cystic fibrosis – a condition I’ve had since birth. I am now able to study again, work, contribute to the community around me and enjoy my life, family and friends…living life to the full.
But others are not yet so fortunate. Some 1600 people are on the transplant waiting list in Australia at any given time.
As we gather with our families and friends around Christmas and the New Year, keep in mind that there is one person on this list each week that is taken away from their family before they are able to get their awaited transplant, no longer able to enjoy these occassions that we often take for granted.
As we celebrate in each other’s homes or at the park or the beach, remember those patients in hospital over this holiday, waiting for the one and only thing they want for Christmas – their life back. I’ve spent a few Christmases in hospital, and while the nursing staff make it as festive as they can, it’s just not the same as home. Spare a thought for these families, who eat their Christmas ham from a tupperware box and pretend their plastic cups are filled with blackcurrant juice when the doctors ask.
Thanks to work by DonateLife, donation rates are increasing – 2011 has been a successful year with an estimated total of 338 donors – certainly more than the 309 donors from 2010 and the 247 in 2009.
But despite having world-class transplantation success and a majority of us who are willing to be donors, Australia has one of the lowest organ and tissue donation rates in the developed world, at just 13.8 donors per million in the last full year compared to countries such as Spain, who have 34 donors per million.
It is because of these sobering facts, that we must all strive to do more to salvage organs from being needlessly wasted and use them to save lives of fellow Australians. These are my friends whose lives, average Australians like you have in your hands.
Just one donor can save the lives of up to 10 other people, and improve the lives of countless more. That’s exceptional by any measure, and for the people who receive the new organs and tissue, it’s even more – it’s utterly life-changing, taking us from complete desperation and darkness to hope and new life – the greatest gift of all.
Organ and tissue donors are a special group – special, but still far too rare. But there is still more to be done – much more – and everyone can play a part.
That is why I have been campaigning for a national approach to change to our system throughout the year, including at the People’s Parliament in NSW – suggestions including the scrapping of the drivers licence system of registration in different states to have Medicare’s Australian Organ Donor Register as the one central register in Australia; providing more funding for specialist organ donation staff in hospitals across the country; and most importantly, making an individual’s consent on the register the ultimate legal authority and taking the burden off families to remake this decision for the individual, especially in a time of such shock, grief and trauma.
2012 will continue this campaign to implement reform into our system –maximising our donation rates, and in particular, proactively tackling our significantly low family consent rates – all with the goal to see more desperately sick patients enjoy their next Christmas and New Year in health…and the next one, and the next one, and the next one.
In this rare time of the year where we stop our busy lives to celebrate with loved ones, we have a unique opportunity to discuss organ donation. Less than half of Australians are not sure of the donation wishes of their loved ones. With a simple conversation, we can change that – for my friends still waiting, whose lives, average Australians like you have in your hands to save.
Discover the facts, decide about organ and tissue donation and discuss your decision with your family. Be an organ donor and you could leave behind you the greatest legacy ever – you could be saving the lives of people like me, who wouldn’t be here looking forward to another year of happiness and health had it not been for that gift of a transplanted organ.
It’s something I treasure with every carol I can now sing (or attempt to sing!), every mouthful of Christmas feast I can now taste, every New Years firework I can now experience, every breath I can now take…and I am so so thankful.
In the spirit of giving and new beginnings, I encourage everyone to engage in this important conversation with the people close to you and register your consent today.
Give the gift of life so that others can have this magical second chance of life too. It costs very little to give, but it means everything to receive. So in the spirit of Christmas and a New Year, make sure you celebrate a lot and give a little too, to those who need it most.
Jessica Sparks is a passionate organ donation ambassador, after receiving a double lung transplant over two years ago. You can follow her on Twitter @_Jess_Sparks or @Sparking_Life
Comments
18 Comments so far
I really don’t see the point in registering as a donor because it’s not a legally binding process. If one does end up brain dead and on life support, your family can say no to organ donation and you won’t get a say in it. I am a registered donor but it really means nothing when I have to rely on my family to fulfill my wishes. For all I know they might be too distraught to say ‘yes, take the organs then turn off the life support’.
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I think organ donation is super important. It’s a shame so little people have responded to this post and how afraid people are of their own mortality. Organ donation is one of the last impressions we can leave on this world that have an impact and are probably our only way to change the life of a group of people. Organ donation is the gift of life, so why wouldn’t you?
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Ias someone who is hep c +ive (and RNA negative) when I checked the register, I found I could only donate tissue, from memory. At least I can do that. I can’t even donate blood.
It’s also a shame how few people have shown any interest in this topic.
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I am an organ doner, on the list as a bone marrow doner and give blood. I can’t think of anything more rewarding to do for someone else. I am so very lucky to be healthy and if I can help someone not so lucky I would do so in a heartbeat.
There is an elderly man who stands at the Murray St underground entrance in Perth every week or so. He has a little cart with a radio playing bright, happy music, he always has a HUGE smile on his face and he holds organ donation forms. That’s it. He doesn’t push them at people or yell out. He just stands there and smiles at everyone, holding these forms. Every time I walk past it puts a huge smile on my face and then I always regret not stopping to speak with him. I couldn’t stop thinking about him on December 23rd and when I popped over to the shop he happened to be standing in one of the arcades and I was so happy to have my chance to speak to him! I stopped, gave him a hug, wished him a Merry Christmas and told him how appreciative I was of his efforts and how special he is for getting out such an important message. He was so lovely and so grateful and very humble… Then I cried! It absolutely made my year, I know it is something so simple but I really think he is amazing for giving up his free time to promote the message of organ donation.
Organ donation is so important. In all honesty, what are you going to do with your healthy organs once you are gone? Talk to your family about your decision as they have the final say. Thank you Jess, for sharing your story.
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I don’t have a donor “organ” as such but I have a golf ball sized amount of donor bone in my leg, enabling me to keep it when a tumor destroyed part of mine. I’m a donor, and a donor of EVERYTRHING my body has to offer, something i’ve been telling my family since i got my L plates at 16, it’s so important.
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Organ donation is so important to my partner and I. We find it ridiculous that when you get your license you think you have become and organ donor, but you really haven’t made your intentions rock solid! That really needs to be changed to a uniform system and i would fully support the opt out system if it were to be put in place.
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Well said Jess. My family and I fully support organ donation and wish we could do more to raise awareness. Until recently, I felt comfortable about donating my eyes and skin (no issues with any of my other bits), but after my mother was diagnosed with a serious condition in her eyes, I immediately realized how ridiculous i had been- imagine being able to give a loved one a gift of sight or life. So, if we all sign up, we are all in a way making a pact that we will do everything within our power to help eachothers loved ones when in need.
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Thank you so much for your responses – it is so nice to be able to connect with others touched by organ donation and/or transplantation. I only hope through my words, I can encourage as many people as possible to register their consent to donate…so thank you. As you have pointed out, it IS so quick and easy, it IS so personally harmless, and it DOES just make sense!
One thing I wanted to specifically make note of, is the idea of an opt-out system which @SarahStevend and @CurlyPops mentioned – the opt-out system has had mixed outcomes around the world… Although it is true that countries like Spain, with the highest donor rate, are indeed opt-out systems, each country is different in its geography, its culture, its people and its attitudes, so there is not a ‘one-size-fits-all’ approach to maximising donation rates.
In Australia, our biggest problem is our considerably low family consent rates which must be addressed first. It is important to note that in countries with these opt-out systems like Spain, the families still have the final say in consenting. So even if we were to implement this opt-out system, it would be reasonable to assume that our problems with family consent would still remain and still prohibit our rates from rising as much as they could.
Perhaps in an ideal world for those waiting for a transplant, we could combine both ideas, but it is unfortunately unlikely to happen in the near future – and especially with national consensus, which is an important goal. Therefore, we must address the significantly negative influence of a family’s decision where people who have already consented are having their wishes overidden – something NSW are attempting to explore now.
I hope this makes sense when you break it down – but really, anything that can save more of these desperately sick lives waiting for a transplant, should have our support, and that’s what I’m about!
Thanks again!
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Hi Jess, I don’t believe an opt-out system is the right direction at the moment either. I’m 100% behind education and improving the rates of family consent. It’s extremely important that everyone has that family discussion. I always direct people to the discussion toolkit on the Donate Life website – donatelife.gov.au
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Jess,
It’s great to see this conversation happening on Mamamia. Given that there is a lot of confusion and misinformation out there, really happy to see this discussion happening here.
Your comments regarding opt-out are particularly important. In Spain, for example, the family consent rate is 85%, and as you note a lot higher than here. In theory the consent rate could be 100% based on the opt-out system, but as you so eloquently write in your post this is about the human condition and “the gift of life” and families are always connected and involved when it comes, literally, to life and death.
Recently the SMH also ran some opinion pieces on the issue of family consent which may be of interest: http://www.smh.com.au/opinion/society-and-culture/should-families-have-the-final-say-on-organ-donation-20111210-1oo9u.html
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I registered as a donor several years ago and am always happy to let my family and loved ones know my wishes, in the hope that they will not only honor them, but perhaps also decide that it’s right for them. My childhood best friend always wanted to be a donor and used to tell me her reasons with much more conviction than I had at that young age.
When she died suddenly at 17 and from a mystery illness, her parents were sad that they were unable to honor her wishes as the cause of death wasn’t clear. I decided then that I had made my mind up and would donate mine.
To anyone who wants to do it but, like me, has an aversion to paperwork,
please know, it’s the easiest thing in the world and takes less than a minute.
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This is such a passionate, well written article, as are the responses. As someone who will soon need a kidney transplant, I urge the government to consider another option regarding transplants. There are some European countries, I believe that Denmark may be one of them, have an ‘opt out’ system.
Rather than consenting to be an organ donor, once you are of legal age, you automatically go on the donor registry.
Those who dont want to donate, and I know that some people vehemently are opposed to this, have to sign something stating that they do NOT wish to be a donor.
How many times have you thought “I really must sign up to be an organ donor”?
Now, imagine how many people have had that thought and, unfortunately passed away before they actually got to do it? Now imagine how many of those people never had the organ donor conversation with their loved ones.
Having an opt out system means that these people will now become organ donors.
It’s just something to think about.
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I just registed on the organ transplant list after reading about a young boy called Cohen with Cystic Fibrosis that jet skied accros the Murry River to raise awareness – such an amazing spirit. Why take your organs when your gone….. you don’t need them anymore!
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This may sound a little unvarnished but I signed up because I know that after I die, I’ll have no use for my organs. Why not let them go to someone who will be able to live a better/longer life because of them?
One thing I would ask is for relatives of donors. Please honour their wish to donate, no matter how hard it is to reconcile with your own feelings on the matter. Their selflessness shouldn’t be denied or overturned just because they’re gone and can’t defend their decision.
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Great article Jess. I’m currently on the waiting list for a double lung transplant. I’m hoping upon hope that I will receive that amazing call soon. In the meantime, I’m doing my best to educate, and to encourage everyone to have that very important conversation with friends and family.
In the end, even if you’re on the national register, your family must give the ultimate consent in their time of grief.
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I am sending you all my luck and wishes that you get this call very soon. xx
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I’m registered. While the thought freaks me out, I know that if I, or one of my loved ones needed a transplant, I’d be so grateful for one- and thus, I want to extend the same gift to another family should something happen to me.
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I am so thankful to have had the discussion with my family about my need to donate my organs and to know what their choice was.
Fantastic idea to completely over haul the system through Medicare and use that as the ultimate decision. I cant imagine being in the situation of losing a love one and then opening the discussion for donation of organs! The stress this would cause to people who havent discussed the choices and are dealing with the loss at once may be to much to bare. My husband is Catholic and didn’t know where his choices lay in regards to his religion. So speaking about it earlier gave us time to research and find a piece from the Pope acknowledging organ donation in the church. He is now all for it and our choices are clearly made.
Wishing you well with your endeavours and also congratulations on your significant change in health.
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