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On the inside of organ donation

There are some things that you just don’t think you’ll ever have to worry about. You know that they’re issues and you know that people have to face them, but you never imagine that you will be one of those people. Even when the facts are staring you in the face you find yourself denying them; this is not possible; this is not happening to me.

I suppose that is why it never really occurred to me that my cousin Geraldine might die young, in spite of her diagnosis of Pulmonary Hypertension coming nine years prior to her death.

For those who haven’t heard of the disease, I will be honest and say I don’t really know how to describe what it is. The simplest way to put it is this: she needed a heart and lung transplant. Placed on the donor list when she was 21, it was seven years before her body simply couldn’t wait any longer. Even on the final day of her life, I was so convinced that she would beat her condition. A week before she died, she was moved to the top of the list; her sister knew it was bad then. I thought her sister was just being pessimistic. I was sure that her being moved up on the list could only mean good things. She would get her new organs. She would be able to live a normal life. She could go on holiday again. She could get her own place, maybe out of our boring hometown. She could adopt a child; she would make an excellent mother, everyone agreed.

Sadly, it isn’t that simple.

I’m not telling you about this for sympathy and I’m not telling you this to scare you. Nor do I want you to think about Geraldine as a feeble woman who sat around feeling sorry for herself for those nine years. She was, in fact, the most lively person I knew. She had a better sense of humour than most people in that she could laugh at the things everyone else would just complain about. She could turn the worst customer service in a restaurant into top quality entertainment and the longest traffic jam into one of the highlights of your outing. She was inventive. She was talented. And even when her body finally did start to show weakness, she never did.

The reason I am telling you this is because I idolised my cousin, and even saw her as an extra sister in many ways, and yet it still took the shock of her death to make me understand how important organ donation is. Before that, it was just something that would sort itself out. You needed an organ, you’d get one. It didn’t even occur to me that it had been seven years since Geraldine had been put on the waiting list.

Each year, an average of 1000 people will die waiting for an organ donation, which is roughly three people every day. In February 2013, it was estimated that around 15 in every 100 people waiting for a heart transplant died due to a shortage of donors. And yet, at the same time that this was estimated, over 90% of the UK population said they supported organ donation; only 30% of them had signed up to the register. It is still an unfortunate fact that you are far more likely to find yourself on the waiting list for an organ donation than you are to become an organ donor. The gap between the number of organs available and the number of people who need them is an ongoing issue. But is it an unsolvable one?

The first Christmas after my cousin’s death, my girlfriend at the time got me the best Christmas gift I have ever received. She donated £30 to the charity Live Life Give Life, and in doing so introduced me to the organisation that changed my whole perspective. In April 2013, I organised my first charity event for them and that September I was officially invited to an advocate training day. It was here that I was re-introduced to the world of hope. I met the people that made my younger self seem a little less naïve. And the strangest thing is, these people never expected to be the success stories. Every single story was different; some had been sick for years, some had been taken completely by surprise. Yet no matter how close to death they had come, these people had survived. One girl that I met was the same age as me—the same age as Geraldine had been the year she was diagnosed—and had suffered with Cystic Fibrosis. At the age of 17, she had received a double lung transplant after becoming dangerously close to losing her battle. When I met her, it was hard to believe she could have ever been sick. She was energetic—she was beautiful—she was everything that people want to imagine when they hear the word ‘alive’.

Still, I was not the only bereaved person at this meeting. I also met one of the fantastic founders of the Connor Saunders Foundation. This woman had lost her brother when he was 19, and until his death, her family had not known that he had registered to be an organ donor at 16. A summary of market research statistics taken in mid-2013 shows that only 40% of the sample interviewed knew whether their relative had registered as a donor or not, even if an individual is signed up the family would still be asked for their agreement to donation. While this might mean that people can still be donors if they have not registered, it also means that people who have registered might not be. The real difference, however, lies here:

• Whilst the potential to save someone’s life has widespread resonance, only 31% of the population are willing to agree to donation when their loved one’s wishes are unknown.

There is general consensus that objecting to donation in this instance is the easiest decision and least likely to offend. Therefore a key message to communicate is that, in reality, 82% of the population definitely want to or would consider donating all or some of their organs. The decision to agree to the donation of a loved one’s organs is more likely to be in line with the person’s wishes than the decision to refuse the donation. (source: http://www.organdonation.nhs.uk/statistics/latest_statistics/market_research.asp)

The family of Connor Saunders faced a hard decision upon his death but ultimately they chose to not only honour his wishes, but take pride in his decision. The website for the Connor Saunders Foundation, www.connors5.com, is named after the five lives that Connor went on to save. The family have devoted themselves to supporting the things that Connor loved. They have turned a heart-breaking experience into something beautiful, and through their strength and kindness they have given the greatest gift possible to five other families.

Losing a loved one is never easy, regardless of how you lose them. The people who receive organs do not forget that. They celebrate the day that their life was given back to them like another birthday, but they never forget the person who gave them that second chance.

So why are there not more stories like these? The primary reason lies in education of the general public. The market research of 2013 showed that over half of those questioned had seen no publicity for the need for donors, with a third of them stating that they could not recall it ever coming up in conversation. In Spain, which has one of the most positive ratios in the world when it comes to organ donation vs population, the system they have regarding organ donation is presumed consent. They do not have an official ‘opt-out’ register for those that do not want to donate their organs, but this does not mean that they stop asking families for their permission or immediately use people as donors when their wishes are unknown. No doctor is going to force a grieving family into that kind of decision and I do not believe that they should; the reason that the refusal rate amongst families in Spain is so low in comparison with many other countries is that the publicity and general understanding of how donation actually works is dramatically higher. It is not about having an ‘opt out’ or ‘opt in’ system. The key to saving lives lies in education, and openly discussing the issues.

This is where Live Life Give Life come in. They’re not going to tell you that everyone in the world has to be an organ donor; that wouldn’t be fair. We can’t say that every conversation has to go the same way. However, what we can do is get people to actually have the conversation. The funds that the charity raises are placed into two primary areas. One is into the education of the public on the subject of donation, so that whether or not you choose to sign up on the register, your decision is educated. The other is funding research projects allowing the medical world to develop and learn how to make each different type of transplant safer and more accessible to the people involved. It’s not about getting everyone to share exactly the same views, but if people don’t start talking about these issues then how can these views ever be known?

Sometimes it takes a shock to make you see what might have been staring you in the face. Losing my cousin was one of the hardest experiences of my entire life and I still miss her every day. Yet, through that loss I have gained knowledge that I might never have brought myself to face. I have met some of the most beautiful people I know and shared in the celebrations and bereavements of others in the transplant community. This charity doesn’t just change the lives of those on the list; it has changed my life and allowed me to channel my grief into something I can be proud of. In the last year, we have suffered some sad losses in the transplant world, but we have also received an overwhelming increase in support. Very recently, our youngest ambassador James Lewis received a heart transplant. He continues to make fantastic progress and seeing his smiling face on my Facebook newsfeed this evening is what set me off writing this article. James is four years-old.

On January 29th, 2015, the fourth live music event that I have organised for Live Life Give Life will be held at The Ram and Shackle in Fallowfield. After every event I have done for these guys, I have felt a happiness that I can’t compare to anything else. There is not a single event at which I do not meet someone who says ‘I never knew that’ or ‘I always thought it worked like this’. But people are open to learning and that is the first step to writing more stories with happy endings. A large campaign that we have been using lately bears the slogan ‘Let Love Live On’, and I find this fitting in so many ways. This organisation has not just allowed the beautiful recipients to live on and share their experience, but it allows the memories of those we have lost to live on and make the big impact on the world that they deserve to make. My cousin is not gone. Connor Saunders is not gone. Not a single person who has died waiting on the list, nor a single person who has passed their gift of life onto another will ever be gone. They are living in our conversations and our willingness to learn. They live in the breath that will blow out the candles on James Lewis’ next birthday cake. They live and they dance to the beat of every heart that drums on in their honour.

So let’s keep that love alive. Think about it. Talk about it. Do something about it.

Thank you for reading.

Important Sources:
http://www.organdonation.nhs.uk/statistics/latest_statistics/market_research.asp
http://www.itv.com/news/2013-02-11/the-facts-and-figures-and-myths-and-legends-of-organ-donation/
http://livelifegivelife.org.uk/
http://organdonor.gov/about/data.html
http://www.connors5.com/

Tags: Health, NHS, organ donation

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