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What’s Your Donor Decision?

 

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One organ and tissue donor can save the lives of more than 10 people, so why does Australia have an organ donor shortage? The answer is a complicated one.

In the thick of government legislations and donor registries, it is always the consent of family members that are required when donating a deceased person’s organs. Death can be a sensitive and uncomfortable topic of conversation, so it is not surprising that over two thirds of Aussies are unaware of their loved one’s donor decisions.

Let us break down the walls that prevent us from talking about death and make sure your family and friends know what you want when that part of life arrives. One of the easiest ways to let your loved ones know of your donor decision is to register to the national Australian Organ Donor Register. Registering will leave your family in no doubt of your donor decision when faced with the difficult task of giving consent. 

You can register here

The generosity of organ donors can save and transform the lives of many seriously ill Aussies, so reflect carefully on your decision and discover all the facts regarding organ and tissue donation. Donating is a personal and sensitive decision it is important you show respect to the donor decisions of your loved ones regardless of what it may be.

 

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The 3 Stages of Being an Organ Recipient

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We often praise donors and their final act of generosity through organ donation, this deeply personal act deserves every bit of recognition, however, today we are going to reflect on organ recipients and discuss their challenges. Someone who is in need of an organ transplant is extremely ill, even close to death. Organ failure does not discriminate, those who are suffering can be anyone from babies to teenagers right through to the elderly.

 

Here are the 3 stages of being an organ recipient:

Stage 1 – Life in Limbo

The most uncertain of the 4 stages, Life in Limbo, will test your patience. At this stage, a person’s organs are failing and they have been placed on a waiting list. Hospital bags are packed and all they can do is wait. Wait for that phone call. It could be this afternoon, tomorrow or never. Waiting for that life-saving call while their health slowly deteriorates each day is nothing but filled with anxiety, fear, anger, and despair. 

“Everything was an effort before the transplant and when I went to bed I did not look forward to the next day.” – Will, Organ Recipient

Stage 2 – Maintaining the Gift of Life

If a patient is lucky they have made their way off the waiting list and have received an organ transplant. But that does not mean all their health issues have instantly been resolved nor is it smooth sailing from here on out. Transplant patients will be required to take an abundance of medication and undergo grueling appointments to ensure their body does not reject the donated organ.

“A lot of people are shocked when I tell them I have had two kidney transplants along with a hysterectomy and hip replacement as side effects to lifetime immunosuppressant medications. Most people think a transplant lasts a lifetime, especially since I’m young.  However, it is an ongoing journey to maintain a gift of life, and you never want to stop giving and living and honouring your living or deceased donors and making a legacy.” – Mary, Organ Recipient 

Stage 3 – Freedom 

If a patients body has successfully accepted the donated organ and they are managing well in maintaining their health they can now move forward in getting their life back. Freedom to the patient also brings freedom to their family and friends, loved ones are now simply loved ones, not nurses. Recipients can now enjoy basic parts of everyday life like driving a car, going on a trip, or simply enjoying an outing without the fear of an emergency.

“3 ½ years later, I have now celebrated four more birthdays, four more wedding anniversaries, seen the birth of my two nieces, become a passionate advocate for organ donation, and have made many special memories. The most exciting new update is that my husband and I are starting our adoption journey. Because of the gift of life I was given, I am now able to become a Mommy. The beauty of that is never lost on me.” – Lisa, Organ Recipient

Understanding the Donation Process Part 2

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In our last post, we stressed the importance of understanding the donation process before making your organ donor decision. Organ donation is an extremely valuable gift, it not only changes but saves the lives of many people suffering from life-threatening illnesses. Feelings of anxiety and stress and a poor quality of life can instantly be improved by the gift of an organ donor. For the extreme impact organ donation has on a person’s life it is crucial we take the time to think about our donor decision carefully and share it with our loved ones.

 

It is perfectly normal to want to question the donation process, the more questions you ask the more you will know you are making the right decision! Questions like: What does the donation operation involve? Will I look different? Can I have an open casket at my funeral? Do I have to pay? Will my family know who I have saved? are all acceptable to ask.

A donation operation is administered with the utmost care and profession like any other operation. Precise surgical incisions are made to remove the organs which are then closed and covered just like any other surgical procedure on a living person. Change in physical appearance will be minimal and generally not visible, so an open casket funeral is still possible if it is of desire to your family. Organ donors will not be expected to pay a cost for donation nor will they receive a financial benefit. By request, families will receive updates and outcomes about patients who have benefited from the donation, although, identities will be kept anonymous for legal reasons.

Remember to take the time to discover and understand the donation process before you make your decision. If you have any concerns or are faced with any challenges you can find the contact details of your local DonateLife agency here. In Australia, DonateLife provides ongoing support, care, and information for the organ and tissue donation community.   

Understanding the Donation Process (Part 1)

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Before you make your donor decision it is important you discover all the facts about organ and tissue donation and understand the process. If you have already made your decision it is even more important you review all the information to ensure you have made the right decision.

 

One of the most important things to know when it comes to organ and tissue donation is that in Australia (and many developed countries) the family of every potential donor will be asked to give consent for organ donation and transplantation to proceed.

Organ and tissue donation involves the removal of organs and tissues from a deceased person’s body – a donor and transplanting them into another person who is often extremely ill or dying – a recipient. 

With the exception of kidneys and some tissues, death must have occurred before organ donation can proceed. There are two types of death that are considered during the donation process: brain death and circulatory death. The type of death is important in influencing the transplant process and which organs and tissues can be donated.

Whether or not donation has the possibility to go ahead, doctors and medical staff will always provide the best care, dignity, and respect for patients during their last moments. The common misconception that doctors will not try to save someone who is a donor can greatly influence donor decisions, we can not stress enough their job is always to save you.

Stay tuned for Understanding the Donation Process – Part 2.

Organ Donation: Opt in vs Opt out

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Could the key to solving our organ donor shortage be a policy change to a “presumed consent” or “opt-out” system? Currently, Australia has an opt-in system whereby individuals must actively register their organs if they wish to donate. An opt-out system assumes consent to all citizens, and those who do not want to have their organs donated must actively remove themselves from registration.

 

Spain is often considered as the opt-out success story, as they have the highest rate of organ donations in the world. Although, the nature of their high success rate can’t be solely attributed to the opt-out scheme. The legislation was passed in 1979, taking over 10 years for donor rates to increase. It was due to improving infrastructure, funding and staff training that ultimately lead to Spain’s current success rate. And even with the legislation in place, families are always consulted and still have the final say.

Would a simple legislation change actually improve the results of organ donation?   

The results aren’t guaranteed and Australia shows no sign of changing our legislation anytime soon.  So, if you want to become an organ donor and save the lives of many you still need to register your decision and more importantly share that decision with your loved ones. SBS has written an excellent article explaining how to become an organ donor in Australia, with many useful links that provide valuable information in discovering all there is to know about organ donation.

You can access the article here

Organ Donation: True or False

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How much do you really know about organ and tissue donation? Take our true or false quiz and find out!

Wealthy people can move ahead on a waiting list because they have the money to do so?

False!

You may think people with money can “buy” their way to the top of the list, but this is not the case. Important factors such as severity of illness, time spent waiting, blood type and other medical information are all used to determine the allocation process. Money is not one of them!

Old people can’t be donors?

False!

Your medical condition at your time of death will determine whether your organs are eligible for donation not your age. Did you know the oldest organ donor in the US was 93 years old?

A family can refuse organ donation even if the deceased had registered on the national donor list?

True!

Regardless of a person’s donor decision, their family always has the final say and will be asked to give consent.

Tissue donation from one donor can help the lives of over 30 people?

True!

Tissue such as eyes, skin, and bone can be donated to help people suffering from cancer, illness, or people who have experienced severe burns or trauma.

Once someone suffering from organ failure undergoes a transplant, the donated organ will last for the rest of their life?

False!

Transplanted organ don’t last forever, transplants prolong and improve the quality of life for their recipient, but, unfortunately, they have their limits. 

How did you go? Tell us your score in the comments below.

How to Discuss Organ Donation With Your Family

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Have you decided to become an organ and tissue donor? In the event of your death, your family will have the final say and their consent is always needed for donation to go ahead. It is even more important to discuss your donor decision with your loved ones than it is to register. Families who are aware of each other’s wishes are more likely to support them and agree to donation.

Here are 4 simple ways to discuss organ and tissue donation with your loved ones:

1. A Social Media Post

Did you know you can share your organ donor status on Facebook?

Simply click Life Event on the top of your timeline, select Health & Wellness, then Organ Donor and voila you have just updated your friends and family of your decision.

2. Over a Meal

For some, family dinners are a thing of the past, thanks to social media, iPhones, Netflix, and all things tech. But if you’re lucky to find the time to sit down and have a meal with your family start a conversation about organ donation. You might be surprised by the opinions of your loved ones!  

3. After a traumatic event or death in the news (or in your life)

Unfortunately, the media is filled with negative stories, many of which feature deaths. If a story sparks your interest, discuss it with your friends and family. It’s a great icebreaker for discussing your thoughts on what you want in the event of your death.

4. After a regular health check/GP visit

Times of good health is great for reflecting on those who may be struggling with life-threatening illnesses. Discuss with your family your health and consider having conversations about what it would be like to live with a serious illness.

The Waiting List

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It’s the celebrity story of the week, “Selena Gomez receives kidney transplant”. For those who don’t have social media or manage to avoid all engagement with pop culture here’s a recap: Selena (also the most followed person on Instagram) suffers from Lupus, an autoimmune disease that attacks the body’s tissues. The pop singer took some time off last year to focus on her health and recovery, it was then made public that during the American summer she received a kidney transplant. In her lengthy Instagram post she thanked her “beautiful friend” Francia Raisa for the donation, “She gave me the ultimate gift and sacrifice by donating her kidney to me. I am incredibly blessed. I love you so much sis”.

This story is an eye-opener for those who have never thought of organ donation or those who believe it is an issue you can put off. The fact is anyone could need a life-saving transplant, children, teenagers even celebrities! But the real concern here is what happens when you don’t have a beautiful friend that is able to donate a kidney? Or if you’re in need of a heart or liver? Welcome to the waiting list.

Life on a waiting list can be stressful, complete with feelings of desperation, anxiety, and fear.  Waiting times in Australia range from 6 months to 4 years, sometimes even longer. To understand the limitations of organ donation and the complexities of waiting lists consider the graph below. From 159,052 Australian deaths in 2016, only 503 became donors, that is only 0.31%.

Australian Population24,127,159

 

 

 

 

 

 

 

 

Sixteen-year-old Jarred Roesler who is on dialysis for 12 hours a day is in need of a kidney transplant. But, unlike Selena Gomez, he has not been able to find a viable match among his friends and family so he waits on a national list along with 1,160 other people. “We were all disappointed and cannot fully imagine how Jarrod was feeling,” Jarrod’s mum Linda Roesler said. “So we wait. One phone call can make such an amazing difference to Jarrod’s life. So we wait for that phone call.”

Death Talk – Breaking The Taboo

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Photo by JJ Thompson on Unsplash

There is one thing that is certain in life, and that’s death, it’s circulated all over the media, in our newspapers, on tv and social media. So why is it a topic that most of us find uncomfortable to talk about? End of life can be a challenging experience combined with feelings of grief, anger, and denial. Such a painful experience calls for preparation and planning yet we go to great lengths to avoid it.

More than half of the population are not aware of their loved ones’ wishes when it comes to the end stage of life. Ask yourself, do you really know what your family wants? What type of care do they want? What type of funeral? Burial or cremation? Do they want to donate their organs? These are all important questions that will make those last days slightly easier and reduce feelings of stress.

Author, Satish Modi, reflects on the meaning of life when trying to understand death, “Life is on a lease. We have to accept that. And that means we must make life more meaningful,” he explains. Thinking about death in this way allows you to embrace your life and get the most out of it. But it’s not easy,  “It’s very difficult,” he admits. “But we must learn to feel that our time on this planet is limited and come to terms with it. If we do, we will lead happy and more meaningful lives, not trapped by the problems in this world.”

iDonate encourages an open dialogue about death, the more we discuss it the further death becomes from a topic of taboo. If you talk honestly and listen to your loved ones, facing death will bring you closer and questions will never be left unanswered. So make the time to have the conversation with your friends and family, at the dinner table, over coffee or even on social media. Let’s break down the barriers of death together!

I will leave you with the words of Zenith Virago, a so called ‘midwife to the dying’ – “Everyone has the capacity and courage to do death well. Most people who die well have lived well.”

Religion and Organ Donation

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When making your donor decision, it is important you discover all the facts and understand the donation process. Religion and cultural values can often be a matter of concern when deciding to become an organ donor or sharing the decision with loved ones. Organ and tissue donation is viewed as an act of compassion and generosity; it is for this reason most religions and faiths support the act.

Organ donation is an important conversation to have with your family as they are the ones to give final consent, so it is also important that you discuss and understand the view of organ donation that is held by your religion. Here are two resources provided my DonateLife that will help you in discovering your religion’s position:

Religious Position Statements

Religious Statements of Support

Below you can listen to the opinions of multiple religious and cultural leaders across Australia: 

Take the time to read the resources that are available and make sure you feel comfortable with the position of your religion or faith before registering your decision.   

Nothing is More Valuable

 

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Chiquinho Scarpa may be unheard of in Australia but this powerful billionaire is among Brazil’s social elite. In 2014 Scarpa announced to his friends and followers his intentions to bury his beloved Bentley so, like Egyptian Pharaohs, he could ride around the afterlife in style. He posted to his Facebook: “I decided to do as the Pharaohs: this week I will bury my favourite car, the Bentley here in the home garden! Bury my treasure in my palace !!!”

 

As you can imagine he received incredible media attention, his extravagant gesture was criticised. Why wouldn’t he donate the $500,000 luxury car to charity? Sell it? Give it to someone special or in need? Scarpa ignored the negative feedback and despite being labelled insane he went on to dig the resting place of the Bentley. Not convinced? Here is what he had to say: “For those who doubt me, yesterday I already started making the hole in the garden to bury my Bentley! By the end of the week, I will bury it”

The day of the ceremony, moments before the planned burial Scarpa revealed his genuine motive (Uh ah, there’s a twist!). “People condemn me because I wanted to bury a million dollar Bentley, in fact, most people bury something a lot more valuable than my car,” Scarpa said during a speech at the ceremony. “They bury hearts, livers, lungs, eyes, kidneys. This is absurd. So many people waiting for a transplant and you will bury your healthy organs that will save so many lives.”

We can all agree that burying a Bentley is absurd, but have you thought about burying your organs? Scarpa expressed, “nothing is more valuable. Be a donor, tell your family”. This is definitely a story worth sharing and one that will put our values into perspective. It is incredibly easy to get carried away by our possessions, especially in a throw-away society but we must remember we are nothing without our health. If you needed a life-saving transplant you would accept it, but have you taken the time to register your donor decision in the chance of helping others in need?

If you’re interested in registering you can do so here.

Don’t forget to let your loved ones know of your decision!