Pine needles on the floor. Wrapping paper ripped off and tossed aside, or neatly folded for future use. Labels from new clothes. Potato peel and outer leaves from all those sprouts. Dishes and greasy pans in and around the sink. All that tidying work that needs doing. Christmas includes all those messy bits as well as the glitz and glamour. They can be unpleasant chores left for “somebody else” to do offstage and unnoticed, or shared out and managed with kindness, making the Christmas journey easier for everyone.
The story goes that, during a visit to the NASA Space Centre in 1962, President Kennedy noticed a man carrying a sweeping brush. He went over to the man and introduced himself: “Hi, I’m Jack Kennedy, what are you doing?” The cleaner said: “I’m helping put a man on the moon, Mr President.” Never “just a cleaner”, he was part of the space team. Every cleaner’s in a story.
A dear friend of ours is seeing Christmas through in hospital and, as a day began, was not looking forward to unpleasant medication. Then, a message pinged in from her. “One of my angels in disguise, Jackie the cleaner, came and distracted me as I swallowed it down so only 2 more to go today…” There’s more, of course: “This angel in disguise also comes and says good morning to me as she starts her day, and farewell at the end of her shift. When she leaves my bedside she always checks there’s nothing else I need that she can help with. Much more than “just a cleaner”. She is a key to my healing.”
We remember some of those friendly faces from other hospitals, in Belfast, Birmingham and London. Jane, Rachel, Davy, Stefan, others whose names are mislaid in memory but whose kindness isn’t. The best of them not only kept the wards clean (and changed the bags in those metal bins quietly!), but were always good for a conversation about the world beyond the wards, about their children and grandchildren, their trek to the hospital through the traffic or the snow, shopping and preparing for Christmas, about Strictly Come Dancing (laugh if you must but on many Saturday evenings Strictly proved a welcome distraction, something to look forward to as relief from the daily medical demands. “Ke-ep dancing!”)
Angels in disguise indeed, with cheery greetings as the light first comes into the cubicle, something “normal” helping patients remember they are people first and always more than patients, with a wider spectrum of life than the necessary focus points in hospital.
And from a retired district nurse who was at the forefront of developing hospice care in N Ireland, we learned that “…cleaners were always involved in the multidisciplinary team’s psychosocial ward rounds at hospices, valuing the information and understanding they gathered while brushing under beds.” Excellent indeed.
So, if you’re sitting down after tidying up for the umpteenth time, thank you, and especially to those on the frontline of infection control in the wards, thank you for reminders of how extraordinarily valuable the apparently ordinary can be…
It’s Christmas, so there must be an Agatha Christie adventure on the telly – or some other whodunnit, with somebody’s favourite detective tracking down the culprit and the rest of us at home guessing at the solution before it’s all revealed. Harmless fun.
Today, a thank you to all those who do the detective work of a different kind. The GP who first spots the clues of something significant that needs more skilled investigation. The lab technicians reading the blood samples for familiar – or not so familiar – evidence of things that are not the way we want them to be. The consultants who read the signs in the person in front of them, following first one lead and then another, as many as it takes to get on the right trail and identify what’s doing harm and how it can be caught, stopped.
The patient may also have some hunches about what is happening, reading their own evidence, knowing what the scene usually looks and feels like and how it might now be out of kilter. A wise detective will recruit all the help they can get and conversations with the patient could provide key pieces of the jigsaw and make the picture clearer.
It doesn’t always work as it could, for whatever reasons. The system is under ridiculous pressure. Resources stretched beyond belief, functioning too often on the extra generosity and compassion of committed staff who have already given above and beyond all reasonable time and energy. And, sometimes, people simply get things wrong.
Yet when this team work well with each other, listening, looking, considering and paying careful, caring attention, incredible scenes can become evident, almost invisible agents identified, tracked, apprehended and stopped. Harm can be reduced and, at best, reversed and full lives restored and set free again.
Those forensic detectives who can track and identify a culprit years after the crime through the tiniest samples of DNA, have their match in many of our hospitals. And, in many cases, they both have continually improving technology to help.
Pause Agatha for a moment while we give heartfelt thanks to the less televised detectives of health care…from the GP’s surgery all along the pathway as far as it needs to go…they are working on it today…essential team members in the organ transplant universe.
Somewhere, a child has unwrapped a gift this Christmas of a doctor and nurses kit, complete with uniform, junior stethoscope, thermometer, blood pressure monitor, ear scope, and the rest of the trappings.
Maybe it’s just a fun present for the moment. Of course, it may be an adult’s fantasy of seeing their child grow up to be a skilled and respected member of the medical profession, benevolently dispensing care and treatment to all-comers.
Or, much better, it may be an acknowledgement of a real and growing childhood desire of a passion for the caring professions. One that may stick, through school and all the demands of getting onto an apprenticeship course or into University. Through the teaching hospitals and specialist training, the whole thing. Sticking with it and being true to the desire within to care.
A student nurse was having a blood test herself. As she saw the tube filling with blood, she fainted. When she came to, the phlebotomist suggested she might need to reconsider her choice of career. Fortunately for many, she didn’t. Instead, after twenty years of professional nursing, Christie Watson wrote her beautiful book, “The language of kindness.”
It is packed with honesty and insight, deep humour and frequent tears. Not least as she opens the story of her own father’s palliative care and Cheryl, the nurse who became his closest friend and companion in his last days. A story of profound kindness that could be repeated many times from within the profession.
Like the nurse who explained to us why she chose to work in ICU and wouldn’t want to be anywhere else. “I was working on a very busy ward and a patient asked me to get her some toilet paper. I was distracted by other demands and didn’t get back to her. I only remembered on my way home from my shift. So I prefer ICU. Its busy, intense, but now I can usually give concentrated care to one, or two, patients. That’s what I came into nursing to do.”
When Live Loudly Donate Proudly’s Lucia was recovering from her first liver transplant, amid all the others providing excellent care was a physiotherapist. While Lucia worked on her exercises and we chatted with the physio, to our mutual surprise, we discovered that we had met her many years earlier when, as a young girl, she had been part of a group of young people known to Lucia’s dad. He had no clues then that she would eventually play a key part in Lucia’s healing, or that the physio would be instrumental in Lucia becoming part of the Birmingham Children’s Hospital Transplant Games team, profoundly nurturing her mental health and self-confidence.
What if some of those children who opened their presents a few days ago, maybe some whom we know ourselves, grow up to be the cardiologists, anaesthetists, physiotherapists, psychologists, ICU nurses who will care for us, or for our children? What might we do to make their pathway smoother to being the best they could be, for their sake and for ours?
Thank you to those who start young, for whatever catches your attention and holds your commitment to the caring profession. Stick at it, we really need you, and nothing beats learning the ‘language of kindness’…
Christmas can be a real nest of tangled expectations, experiences and emotions. So many Christmas movies (not knocking them all!) stick to the same formula, the same stories even, suggesting we’re all looking for pretty much the same thing at this time of the year. Couldn’t be further from the truth.
Not going to untangle it here, just trying to tug on a few strands attached to gratitude. In the universe of organ transplants, gratitude will always have, in its deepest roots, awareness of the donors. In most, not all, cases, there are families whose pride at being able to help others may be wrapped in layers of loss that can make anniversaries, and special occasions like Christmas, more tearful than any Christmas movie. That’s what makes the gratitude even deeper for those who receive this gift of life. It is such a costly gift.
Anyone who has had a transplant, or loves someone who has, will be aware of gratitude to organ donors and their families, and for all those tiny things we walk past and take for granted…
To leave hospital again and go home.
To feel the fresh air, feel the rain and the wind.
To breathe, to feel, to see, to move, to think, to smile. To be.
To gaze into space with renewed wonder, to sense the energy in waves on the shore.
The gift of extra time with loved ones. For their company, their conversations, the holidays, the parties, the walks on the beach, the nights in, the smiles and laughter, hugs and kisses, promises and plans.
The fresh chances, opportunities, possibilities that pressing that reset button can bring to life, and to living fully in every second. Not frantically, or even busily, but fully, knowing the value of days, hours and minutes, that could have been very different, for everybody.
Gratitude that grows from the generosity of someone saying yes to organ donation, and from a whole web of others who play a part.
Amid the tangle and clutter of Christmas, over the next few days, we’ll make some space for thoughts of those who make this incredible world of organ donation such a wonderful opportunity, such a precious gift…
For years after her first transplant, Lucia wanted to be a medic. Wanted to start a paediatric liver unit where there wasn’t one, as her much-loved consultant, Professor Deirdre Kelly, had done in Birmingham Children’s Hospital.
Too many weeks in hospital at crucial times affected her A level results. She decided on a different path, maybe to reconsider medicine later. From her last hospital bed Lucia applied to the BBC for a course in journalism and passed the first round with flying colours.
We wonder what would be taking her attention and energy today.
Maybe Gaza and Israel. Probably the children and young people caught and trampled in that vicious conflict.
Probably the plight of the hospitals.
We have watched, many times, as ITU staff took Lucia for CT scans, MRI scans, invasive procedures, and marvelled, even through our unvoiced fears, at the skill in manoeuvring their patient with all her machines and wires and tubes to the next unit. Done with profound care, attention to the tiniest detail, and to the young girl whose life was in their hands.
But what if you can’t take the machines, or the tubes, and have to leave not only the ward but the hospital. Outside there are bullets, rockets, bombs. All the chaos and destruction of a battlefield. What then?
We don’t know.
What we do know is that 16 years ago, on this day, 24th November, through the grace and courage of a donor family still strangers to us, Lucia’s life was saved. It was the start of a road we would never have chosen but with so much that was unforgettable and irreplaceable. Not least the sheer grace and kindness of medical staff, family and friends, and the solidarity of others we may never know. For twelve and a half more years Lucia worked and played and danced…and campaigned from the depth of her gratitude and joy for life. Learning about organ donation and transplants the hard way.
There are better ways to learn. If she couldn’t start a paediatric liver unit she would do all she could to help others have conversations in easier circumstances. Like working to see organ donation awareness education material in schools. Or simply inviting people to start those conversations with their families and friends. Driven, always, by her boundless gratitude for the donors, and their families who, from within their darkness, gave light for Lucia and those she loves.
At whatever level, wherever they are, we know that hospitals, health, children and young people, making a difference, believing in change and in conversations that can save lives, were in her heart. We hold them in ours. Please keep them in yours…
Gentle ripples. One small conversation here, another there. Invitations to think about organ donation. One conversation leading to another. Small, expanding ripples, almost hiding the urgency, vitality, of their topic.
Every now and then, something bigger is dropped into the pool. Makes a splash. Pushes the ripples faster and further, into new places…
Like today’s press release, from Northern Ireland’s Public Health Agency.
“The Public Health Agency (PHA) is delighted to launch new primary school organ donation education resources aimed at introducing organ donation education at an early age. With the educational curriculum in mind, the resources will provide Key Stage1 and 2 pupils with the information they need to find out more about the topic and to discuss it with family and friends.” (Full press announcement here.)
It takes effort to make a splash like that. Like the passion and energy of Lucia, Live Loudly Donate Proudly’s founder, who had this goal in her sights in early 2015.
Lucia had been invited to join a small panel of judges for a schools’ poster competition on organ donation. As the day approached, she was deeply disappointed that she wouldn’t be able to participate. Lucia was back in hospital. Even more disappointed to learn that the competition had been cancelled due to a lack of entries. She knew why. Like Lucia, like most of us, until the matter of organ failure knocks on our door we are unlikely to pay it much attention. In the void, myths and misinformation can take root.
The clock was ticking as Lucia needed a third, life-saving transplant. There were no guarantees…
Determined to make a difference with the time she had, she blue-tacked pages onto the windows of her cubicle in the Children’s Hospital. Her day’s programme had an hour blocked out, off-limits to her medical team. “I’m working,” she said. And she was. Asking questions about what prevented children and young people from having the right information on organ donation, why such conversations might be hard for some, and how to make it different.
Lucia started planning her campaign in that cubicle. With help from some of her closest friends, Live Loudly Donate Proudly was launched from the depth of her illness. A week later Lucia received the call that would save her life a third time, plumbing new depths of gratitude to another donor family.
A few months later, Lucia addressed her local Borough Council, along with Alexia, mother of a young organ donor, and Mary, specialist nurse for organ donation. A Councillor spoke honestly of her difficulty talking with her teenage children about her wishes to be an organ donor, asking the panel for their wisdom.
There was no time for Lucia to answer then but, on her way home, her questions ripened in intense conversation. She compared the difficulty for those teenagers with the engagement and support she experienced with her peers. Lucia was eight years old when she needed her first transplant, and a second transplant before she was ten. Her friends and classmates went through the story with her. They saw her struggles, in and out of hospital, missing classes, sometimes weeks at a time. They saw her joy each time she returned to get on with life and live it fully. They saw her gratitude to the unknown donors who saved her life and gave them back their friend. Saw her commitment to making it possible for others to have the same chances she enjoyed.
Lucia spoke to school classes, to assemblies, took every opportunity she was offered to tell her story and make it useful for someone else. She knew how powerful it was when her peers had it straight. Conversations went home to siblings and parents. They spread. Names were added to the donor register. And as we would hear later, lives were saved.
Back in school, Lucia met with peers and teachers, with the goal to see organ donation education in the Northern Ireland curriculum. She presented her programme to the education minister, and was invited to address N Ireland’s Health and Social Care Trusts, Health Department representatives, health charities, youth groups and national youth conferences.
“It is essential that young people are educated regarding organ donation, the benefits and the facts of what it is and how it works,” Lucia said. “This initiative is not about forcing or coercing our young people into believing that organ donation is what they wish to do. It is about giving them the tools and the knowledge they need to make their own decision. To do this, they must be able to separate myths from facts, and be given a comprehensive understanding of the subject.”
“The Live Loudly Donate Proudly campaign is committed to creating the resources and implementing this on the school curriculum, so that every young person learns about organ donation in safe spaces, where people can feel comfortable to discuss uncomfortable issues…an ordinary conversation that leads to an extraordinary gift.”
Lucia’s fourth transplant brought complications too much for her body to manage. When the Live Loudly Donate Proudly team and the Principal and Vice-Principal from her secondary school met again with the Minister of Education and senior staff from the Department of Health, it was without Lucia, though not without an intense awareness of her energy and wisdom that led us to the moment.
This time, both Departments committed to taking it forward. The newly appointed organ donation promotions manager for the introduction of the opt-out system for N Ireland convened a working group, including Live Loudly Donate Proudly, developing imaginative lesson plans and resources for primary school children. Resources for piloting in secondary schools are almost complete.
Today these resources became available to every primary school in Northern Ireland. Cast into the pool and the ripples begin…
Enough? No. Just a beginning… Lucia wanted the information in schools not just to inform children and young people, but to equip them. From personal experience Lucia believed in the capacity of children and young people to be engines of change, to make a difference. The splash in the pool today is evidence of that. In Lucia’s words…
“Your voice can create change. Whether you’re talking about organ donation, mental health, gender equality or whatever you’re passionate about. What you say matters. We want to encourage young people to discover and use their voices to create change in their local community and all over the world. It is up to each one of us to create a society we are proud to be a part of. Not only for ourselves, but for the generations who will come after us. Use your voice…Live Loudly…”
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…
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.
Always deeply grateful to donors and donor families, for most of us they will remain anonymous. Sometimes, as Jim Kilpatrick tells us, saying “thank you” can open new doors…
When I was 14 years of age I signed my first Organ Donor card, actually a kidney donor card if I recall correctly, and provided my details for my family to be contacted if I unexpectedly died. I didn’t stop to think that I was being altruistic – it just seemed the right thing to do. To think of doing some good out of something so tragic. Like all teenagers of course, having done it, I just got on with living life. It was the 70s, the world was changing before our eyes and life was good.
I certainly couldn’t have imagined then that over forty years later I’d be the one praying for a new liver in order to keep me alive. In 2017 I’d been diagnosed with non-alcoholic cirrhosis, and by early 2018 my condition had deteriorated to the extent that infections were becoming more of an issue and multiple organ shutdown was on the cards. Thankfully, at 4.20am on 2nd April, I got the call from King’s College Hospital that a potential donor liver had been identified and it was time to get to London. The operation began that night and my recovery was rapid – so much so that I was back in the house again within two weeks. It was all such a whirlwind.
Being able to offer thanks to my donor family was at the forefront of my mind right from the moment I woke up in ICU. I was under no illusion that someone (‘a 64 year old male’ was all I was told) had unfortunately passed away, and that his, and his family’s, wish was for his organs to be donated to help someone he never knew. Life had come full circle, and here was my donor being altruistic, and not me. Suddenly I was the beneficiary of someone else’s selfless decision to help save another’s life.
Just when to write to your donor family is difficult. As the donor family grieve for the loss of their loved one, how could you guess when, even if, such a letter would be well-received? The words you use in your first letter are some of the hardest you’ll try to put together. I know I had maybe ten drafts written before I was happy with what I was sending. All I knew was I was writing to the family of a 64 year old man. He could have been a father, or a grandfather. A son, a brother or an uncle. Or all of those things.
My letter was, by necessity, general in its content – of course I was offering my thanks as sincerely and honestly as I could, but without knowing anything about my donor, I was limited in what I could say. The critical element of the letter though was finishing it by expressing hope that, if they were comfortable doing so, I’d love to know as much as they could divulge about my donor. Equally, I would be comfortable doing the same, and would provide updates on my health. This, I believe, was crucial in how my relationship with my donor family developed. It took around four months before a reply came. Val was very grateful to receive my initial letter, and readily provided me with the essentials which I was craving – my donor’s name (Leslie), some information on his working life and his retirement, and how he enjoyed his leisure time. It was lovely to find at the bottom of her letter, a few words saying how she would indeed like to open up some regular correspondence between us, so that we could begin to learn a little more about each other. I was delighted, especially as she said that my letter brought her some comfort, knowing my health was good.
After a number of letters it soon became evident that we both felt we wanted to move to the same next step – a physical meeting. Discussions with the Donor Family Network, as well as staff from NHS Blood and Transplant, led me to the point where I was able to suggest the use of Microsoft Teams in order to facilitate a first meeting between Val and myself. This occurred in September 2022, mediated by transplant coordinators at both ends. The call was emotional, occasionally tearful, but also remarkably uplifting. By the end of the two hour session Val had introduced on screen her brother and sister in law, who were with her, and I brought in my wife, who was with me at home. We got the clearance from the mediators for the exchange of our personal contact details, so that we could begin communicating directly with each other by phone and online. This was a monumental day for us both.
My daughter was getting married in March 2023, and we decided to invite Val to that. This would be our first physical face to face meeting, and the immensity of that couldn’t be underestimated. She was flying to Northern Ireland to meet us, on her own, at a major family event with all the emotions only a wedding day can bring – a colossal leap of faith and trust on her part. We arranged for a discreet meeting several days before in her hotel in Belfast, which was a wonderful occasion. We were joined shortly after by my immediate family who soon made Val feel at home. The wedding two days later was a fantastic day, which Val greatly enjoyed, and we parted with much still to achieve, but with a sound foundation established for us to build our future relationship on.
We met a further three times this year, the last being when Val, her close family and some friends came to support me for the Donor Run/Walk at the 2023 Transplant Games in Coventry. It was lovely for us all to do the walk together in memory of Leslie and to cross the finish line hand in hand. Our relationship is becoming closer every day, and we are in regular contact, catching up on all the family news at each end.
There is no doubt that we are extremely fortunate to have reached this position. Only a tiny fraction of liver transplant recipients will ever get to the stage where they meet their donor family face to face. Under the right conditions the benefits for both sides can be extraordinary. We are both extremely happy with how things now stand, as are our extended families on both sides, and we look forward to many years of love and friendship in the future. Val is under no illusion that she is now an integral part of our family, and treated accordingly by us all. The same is true with Val’s family, and I know I can turn to them in the same way as I do to my own. We are both truly blessed.
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.
