So that was another Organ Donation Week. Pink things all over England, Scotland, Wales and Northern Ireland. Buildings, bridges and natural features lit up in pink, football teams in pink jerseys, dancing for donors, giant banners displayed at iconic sites. Clocking up miles in walks, runs, swims, and cycle rides, in the Race for Recipients. And many stories, stories of lives on the edge, of generous donors and families, of lives transformed, of laughter and joy returned.

Depending on your social media algorithms you might think the whole country was either involved or directly connected to it all in some way.

Well, yes, and no…

Time after time our conversations about organ donation suggest we may all be closer to it than we are conscious of. So many people know someone – a relative, a friend, a neighbour, a work colleague, someone in the school, the street, somewhere – who had a transplant, or needs one, was a donor, is a living donor, is on dialysis, or is in some other way closer to the experience of organ transplantation than we usually talk about. It’s never very far away, though it may not yet be close enough to make us stop and think.

In all that mix, some choose to be living donors. Usually driven by their love for someone close to them, by the need to save life by donating a kidney or part of their liver.  The shared emotions of successful transplants and lives restarted are rich reward.

In smaller numbers are altruistic, non-directed donors; those who choose to donate (usually) a kidney to someone they don’t know, and probably never will.

And yet, for all that, only one per cent of us – only one per cent – are likely to die under circumstances that may allow us to be considered as possible organ donors. And not all of that one per cent will have thought about being a donor, or have let their families know about their preferences. Even then, not every family in those difficult circumstances will find it easy to make a decision.

That’s one reason why donors are so precious. For all of us who would be willing, a very small few could ever be chosen.

And that’s why these conversations are so important. And it’s why we bang on about them so much… Why we help turn the scene pink for a little while, tell each others’ stories about the incredible transformation transplants can bring; lives restarted, friendships continued, donors and their families honoured in their grief, and profoundly, always, remembered with gratitude.

This week, we hope, will have helped start, and inform, some conversations about organ donation. If you helped that happen, thank you. And who knows, it may be that somewhere a conversation has just happened that could save the life of someone you love, or even your own…

Live Loudly Donate Proudly

Our last guest this week, Moyra Mae, has been with us since the beginning of the journey.  Organ donation is not just a medical issue.  It’s personal.  And not only for the donor and recipient…

To write a post for Organ Donation Week about my friendship with Lucia is intimidating to say the least. I have tried to keep it brief, but to still give my insight into the impact that organ donation can have on friendships.

I had the very lucky opportunity to be friends with Lucia since we were four years old. It’s very hard to describe or summarise any friendship but the complexities of a friendship with someone who had multiple transplants is even more difficult to put into words.

To me, Lucia was always my greatest friend. Despite the difficulties that she had with her health, Lucia was always so much fun, full of energy, the last one to leave the dance floor, the best advice giver and the most supportive friend you could think of.

I was friends with Lucia throughout her whole transplant journey. I remember the first time that she had to go off school and I first heard the term ‘liver transplant’. It was confusing as a young child, and I missed her a lot. When Lucia returned to school, we were all so excited and argued over who got to sit beside her in lessons. She told us all about the organ donor and we had a LOT of questions. But even with Lucia’s pretty comprehensive understanding, even at the young age of eight, I certainly did not fully understand the severity of liver failure or the gift that an organ donor and their family had given.

Lucia went in for her second transplant when we were ten. This was my first introduction to the transplant waitlist. It was hard to comprehend that Lucia needed a transplant, her eyes and skin were becoming jaundice, and yet she was still waiting. Regardless of how unwell Lucia felt, she was still able to go watch a ballet with me, dance, laugh and be a ten year old. Finally, after what felt like a very long time, she got her second transplant.

Lucia didn’t need her third transplant until we were sixteen. This time I understood more that Lucia was actually very sick and that a transplant was a serious procedure. However, Lucia still remained so positive and reduced my worries and fears. While Lucia awaited her third transplant, she began to campaign for organ donor awareness more and more. She even let us help out with a short video. A very unwell Lucia still managed to have endless patience with a bunch of silly sixteen year olds who couldn’t get their lines right. Once again, Lucia got the call that a donor had been found and she could receive a liver.

Throughout all these years and all these transplants Lucia spent a lot of time either in hospital or at home. We spent a great deal of time apart. This was difficult at times and involved a lot of phone calls and quick catch ups, but it taught me that if you have a true friendship, distance only makes you closer. It creates that magical relationship where no matter how long it’s been since you’ve seen them, the friendship is as strong and as natural as it has always been. This is how it feels for me now. Even though Lucia did not come home after her fourth transplant, our friendship remains.

To say ‘thank you’ to donors and their families seems so insignificant compared to the huge opportunity that they offered to Lucia. It allowed her to achieve so many amazing things; carrying the Olympic torch, competing in World Transplant Games, meeting Michael Phelps, being awarded a BEM and starting the Live Loudly Donate Proudly campaign to name a few! But of course, on a personal level, I am so profoundly thankful to Lucia’s organ donors who gave me a best friend for so many more years.

So, this week, and every week, please have the conversation about organ donation.

Moyra Mae

Chronic illness, and the world of organ donation, can take you to extraordinary and unexpected places, like this story from Megan McGillin…

When life presents us with challenges, some individuals find the strength within themselves to rise above their circumstances, not only to survive but to thrive. My name is Megan, and I’ve embarked on a lifelong journey with liver disease that has shaped me in profound ways. This is the story of my resilience, my advocacy for organ donation, and the incredible friendship that inspired me to “Live Loudly.”

At the tender age of 10, I received a diagnosis that would alter the course of my life – cirrhosis of the liver. It was a daunting revelation for a child, but it was only the beginning of my medical journey. As time passed, I learned that I also had portal hypertension, a condition that further complicated my health. The prognosis from my medical team was sobering, suggesting that I would need a liver transplant by the age of 18, if not definitely by 21.

But here I stand, well beyond those milestones, without having undergone a transplant. My journey has been marked by determination, a commitment to a healthy lifestyle, and a strong belief in the power of advocacy and organ donation. I’ve embraced habits like regular exercise and avoiding certain foods, including alcohol, to protect my liver and prolong its function.

One crucial element of my journey has been my passion for advocating organ donation. This cause took on a profound significance when my dear friend, one you may already know, Lucia Quinney Mee, faced the daunting challenge of needing not one, but four liver transplants. Without the generosity of donors, Lucia’s story would’ve unfolded differently. Inspired by her incredible strength and resilience, Lucia initiated a campaign that would change lives – “Live Loudly, Donate Proudly.”

Lucia’s campaign was a resounding success, raising awareness about organ donation and emphasizing the importance of discussing this critical topic with loved ones. It resonated deeply with me, and I was determined to keep Lucia’s message alive and thriving.

As I ventured off to university to pursue a degree in Medicine, I decided to use my creativity and passion to further the cause. I designed and created lanyards adorned with Lucia’s slogan, “Live Loudly, Donate Proudly,” and the simple phrase, “Let’s talk about it.” These lanyards have become a symbol of hope, a reminder of the importance of organ donation, and a conversation starter.

My journey with liver disease has taught me resilience, compassion, and the importance of advocacy. It has shown me that life’s challenges can be transformed into opportunities to make a difference. My commitment to organ donation is not just a personal choice; it’s a mission to inspire others to become donors, to save lives, and to ensure that stories like Lucia’s resonate with others.

In early 2023, I participated as Miss East Belfast in the 2023 Miss Northern Ireland competition. Right from the start, I had a clear objective: to use this platform to raise awareness about organ donation in Northern Ireland and encourage people to have conversations with their loved ones about their organ donation preferences. Throughout the competition, I engaged with sponsors, hosts, and our local legend Dáithí Mac Gabhann. I shared my message through lanyards and had numerous discussions about promoting organ donation while also sharing our personal experiences with it. Although I didn’t win the overall contest, I did win the ‘Beauty with a Purpose’ category. This victory propelled me to continue advocating for organ donation, both at home with my friends and family and on various social media platforms. I even had the opportunity to speak about this cause on a national level during an interview with BBC NI. My dedication to raising awareness about organ donation was recognized when I received the Local Women’s Young Inspirational Woman of the Year award in August. The Miss Northern Ireland competition brought my message into the spotlight and opened up incredible opportunities and accolades for me.

Throughout this journey, my mission has remained steadfast, honouring the memory of Lucia, and keeping her voice alive. Lucia though no longer with us, was an unwavering pillar of support during my illness, and her memory continues to inspire and comfort me.

So, let’s talk about it. Let’s continue the conversation about organ donation, raise awareness, and honour those who have faced the unimaginable with courage and grace. Together, we can “Live Loudly, Donate Proudly” and make a lasting impact on the lives of countless individuals awaiting the gift of life.

Megan

Our second guest this week is Seána Maguire, Head of Spanish in Aquinas Diocesan Grammar School, Belfast… and more, as you will read…

Organ donation is a topic that has enriched my classroom practice as a teacher. It has really shone a light on the very important role that teachers play in the education of our young people on such a vital issue, providing them with accurate information and the opportunity to make their own informed decisions. I would even go so far as to say that I am a better teacher since I started learning about it.

I was first introduced to this by Lucie Dumont and the Chain of Life team in Quebec.  I will be forever grateful for the period of time that I had as a volunteer with them and how much this taught me.

On 30th June 2023 I was awarded the Sunday Life Spirit of NI Award for Education at the Culloden Hotel. This was a culmination of years of work and collaboration.

Seána Maguire, with her mum, receiving the Sunday Life Spirit of NI Award for Education 

It was a privilege to be nominated for this award by the Northern Ireland Organ Donation Team. The specialist nurses have been giving their time since 2017 to come in to speak to our Year 13 and 14 pupils as part of their Key Stage 5 Enrichment module in Organ Donation. Pupils would listen intently to them as they explained their role and how they provide support to the families of patients who come to an intensive care setting, often following a sudden traumatic event. Pupils get the chance to ask questions and learn about this in the relaxed classroom environment.

Our module has also received the support of the Belfast renal transplant team and pupils have enjoyed lectures on kidney surgery from Mr Tim Brown, Belfast City Hospital. Indeed, one of the first pupils on our first pilot scrubbed in with me to observe a living donor kidney removal by keyhole surgery and then the transplantation of the kidney in the operating theatre, led by Mr Brown. To see a kidney pink up after it has been transplanted into the recipient and begin to function as soon as that clamp comes off, is a sight that I will never forget, nor ever be complacent about.

Indeed, even a pandemic did not stop this formidable team from carrying out their work here in Belfast, showing innovation and creativity and approaching all new challenges with curious minds and a sole purpose to serve their patients as best they can. During remote learning, Dr Mairead Convery, Paediatric Nephrologist Consultant, gave a live lecture to our pupils via Microsoft Teams, and such was the interest, we had 60+ pupils online. This is a testament to the work of our medical experts and also to our young people.

Throughout this journey, it has been a privilege to work with and learn from many people who are all part of the organ donation family here. The Oisín McGrath Foundation has provided our pupils with opportunities to take part in the annual Gaelic games events, and indeed it was extra special for the Year 8 Gaelic team to win the Oisín McGrath Shield back in 2017. We have also worked with Transplant Sport NI and through Orla Smyth our pupils learnt all about the transplant games and how it is the recipients’ wish to honour their donor.  Taking part in the World Transplant Games is a testimony of this.

Orla Tinsley’s wonderful RTE documentary, Warrior, which tracks her in New York whilst on the waiting list for a double lung transplant with cystic fibrosis is another example of the strength and resilience shown when faced with such an adversary. Two weeks ago (& Sept 2023) she was awarded an honorary doctorate for her work by UCD.

On the Waiting List is a BBC documentary which should also be seen by all pupils across the country. Stephen Watson shows the reality of being on the waiting list, on dialysis and how getting that call transforms lives. It also shines a light on the world class renal expertise that we have here in Northern Ireland.

It is important to take a moment to also reflect on the fact that here I am, writing for the Live Loudly Donate Proudly blog. I was blessed to have the chance to meet Lucia Quinney Mee and got to spend an afternoon with her, and her mum Rachel. I knew back then that Lucia had an indomitable spirit and drive and as a young person, she was determined to bring organ donation into the NI curriculum. Our pupils watch clips of Lucia in which her strength, determination and resilience shine through as she speaks with passion about organ donation education.

As a teacher, it is a privilege to be able to carry on that work and to work alongside other teachers, donor families, recipients and families on the waiting list, from all education sectors in Northern Ireland, in the education working group, Public Health Agency. After working together online for a couple of years, we all had the chance to finally meet on 1st June this year at the launch of Daíthi’s law in Stormont and send love and wishes for the little pocket rocket that is Daíthí on his journey to hopefully getting that call one day for a much needed heart. (Weblink: Donate4Daithi)

A word of thanks to the wonderful team of colleagues in Aquinas Grammar School who have worked with me along the way, piloted lessons after school and in the curriculum, and always supported this with open hearts and enthusiasm. Our staff, pupils and families and wider-community have embraced this topic and have their own stories to tell. ‘WomenEd NI’ have also quietly encouraged along the way behind the scenes, with their motto of Being 10% braver.

Hopefully soon, teachers across NI will be facilitating conversations in classrooms about this important topic and young people will be leading the way in important matters of informed choice and consent. As the Irish proverb goes, Mol an óige, agus tiocfaidh sí (Praise the youth and they will flourish).

This week marks Organ Donation Week 2023 and our school community is getting active walking, running, swimming and cycling to honour the organ donors, the recipients and those who are on the waiting list. Perhaps you too might have time this week to walk a few miles and to contribute to the UK wide Race for Recipients?

Link: Race for Recipients 

Seána

In the first of our guest blogs this week, Ann, an artist and good friend who worked with Lucia on creating the logo for Live Loudly Donate Proudly invites us into their conversations in colour…

“Bright colours” Lucia said immediately! We’d just begun our chat about how she envisaged the logo for ‘Live Loudly Donate Proudly’.

Lucia’s affinity with the local landscape, and mission to live vibrantly within it, brought our conversation quickly to what the late summer was offering, right there, right then, right around us! We soon found ourselves talking over photos we’d just taken and sliding the colour picker about in photoshop plucking out colours palettes, directly from local landscapes.

Lucia’s penchant for purple drew her instantly to the hillsides of heather in bloom. Whin (gorse) yellows, and the greens of a long summer, following suit. Meanwhile, I was enjoying Lucia getting a kick out of the fact that purple and yellow were ‘complementary colours’ within the colour wheel!

Our ‘logo’ conversations continued and Lucia continued to teach me. We deliberated over forms and shapes to symbolise what Lucia could express so precisely in words. Eventually, we managed to hone it all down! A pair of leaf shapes, blue and yellow, would be representative of the precious acts of giving and receiving. When the colours blue and yellow are mixed green results. So, at the very core, where the leaves met, new green growth emerges – something truly miraculous created between them, between these extraordinary acts of receiving and giving. The outer circle protectively encloses all within. Its own form, having no beginning and no end, representing the ongoing, the eternal, something unceasing.

It was just over a year later on her Gala dinner night, 8th September 2016, when the penny dropped even further and I was completely blown away listening to Lucia speak, so honestly, so eloquently, to a huge crowd of people, of her personal experiences as an organ recipient. The entire room went silent and remained so, for her every word. Lucia’s openness and wisdom deeply affected very many people in the room that night and in those moments I began to understand why the extraordinary acts of giving and receiving around organ donation are themselves, in the truest sense, fully complementary.

What a privilege Lucia, to have had these conversations with you. I am blessed in this – thank you.

And let all of us keep on talking proudly about organ donation and help ourselves understand more and more of these acts of giving and receiving.

Ann.

It’s that Pink week again.  Organ donation awareness week.  There could be a building or two near you that is proudly wearing pink to provoke a conversation or two.   There will be a lot of information, stories, photos and videos on social media and in the press.  Maybe TV and radio mentions.  Banners and billboards.  Posters on buses and in bus shelters.  In some places there will be reminders on petrol pumps and beer mats.  Some of us might even be wearing pink…

Not the Space Station, just Meadowhall, Sheffield, dressed in pink to support organ donation…

This year, Northern Ireland joined the rest of the UK, and various other countries, in changing from an “opt-in” system to “opt-out”.  Instead of having to sign the donor register (we still can), we are all now presumed to be consenting organ donors, unless we opt out, or are in any of the exempt categories.  It doesn’t mean we are donors against our will, or against the wishes and sensitivities of our families.  Consent will always be sought from our families and without it organ donation will not proceed.  That makes it just as important, if not more so, to let our families know what we would choose, and to have thought about it all before we are ever in that demanding situation.

With help from a few friends, Live Loudly Donate Proudly will post a blog each day this week.  Something to help a conversation, help keep us in the pink.

It may be that a conversation that starts this week is the one that saves a life you love…

*That building…is…Meadowhall, Sheffield…