On 24^th November 2008, the anniversary of her first liver transplant, Lucia was added to the active transplant waiting list again.  In January 2009, tired, uncomfortable, and skin yellowed by jaundice, Lucia watched the television coverage, excited and inspired by a presidential inauguration on the other side of the Atlantic.  One where skin colour of a very different kind was a headline focus.

Barack Obama was sworn into office as the USA’s first African American President.  Amid all the other hopes that day carried was the hope that this election choice would hasten a day where skin colour would become less of an excuse for negativity and prejudice.

There was an African American poet in the ceremony then, a poet with a question.  “…What if the mightiest word is love?  Love beyond marital, filial, national, love that casts a widening pool of light…?” (‘Praise song for the day.’)

On the same spot, twelve years later, the 22-year-old African American poet, Amanda Gorman, impressed millions.  “…there is always light if only we’re brave enough to see it, if only we’re brave enough to be it.” (‘The hill we climb.’)

We looked for her videos afterwards, more poetry from the same pen.   We knew Lucia would have found strength in her words, her courage.  A young woman with a powerful voice making a difference, turning her own struggle and that of countless others into resources to inspire, to awaken, to rekindle hope.

Obama’s inauguration ceremony over, as British TV prepared to tell more of the story of this man who was now president, the phone rang in our house.  Within an hour and a half all four of our family were on a small plane from Belfast to Birmingham with the hope of a second lifesaving liver transplant for Lucia.

A liver transplant in the USA can cost hundreds of thousands of dollars.  It’s not something many of us need to think about in the UK.  After the country celebrated the end of the second World War, the majority here made a choice for a new government, determined not to return to the way things had been before.   The National Health Service was born, with a commitment to make healthcare free at the point of need.

Again and again, we had reason upon reason to be grateful for the care, skill, medication, even flights, family accommodation, and so much more.  And grateful that, when it mattered most, we never needed to consider how much it would cost.  That is done by others elsewhere.  Given to us in our need, available for us all through the NHS whoever we are.  Able to contribute or not.  As it should be.  A gift, like the hope that phone call brought.  Someone who may only ever be for us a young man whose family, somewhere in an ITU conversation with a Specialist Nurse for Organ Donation, generously, graciously, gave permission for organ donation.  The gift of that young man’s liver immediately saved the lives of two people, one of whom was Lucia, and hope was given the fresh rush it needed.

It did, of course, for us put that other celebration of hope in the USA into the shade for a time.  Nor would any of it have been a priority for the family of our donor.

But there was hope over there.  Poets gave voice to hope that was deeper and longer lasting than any presidency, any political moment.

Like the dream that outlived its preacher, celebrated yesterday on Martin Luther King’s Day, that still rings clear against all odds.  Dreams like these outlive their carriers and look for others to give them voice.

Years after that 2nd transplant, Lucia was one of two Pramerica ‘Spirit of Community’ All Ireland Youth Volunteers of the Year, alongside another young woman, Emily Duffy.  Lucia chosen for her campaigning for organ donation awareness, and Emily the creator of an innovative sleeping bag for homeless people and refugees.

They were both invited to the equivalent award ceremony in the USA.  During the visit Lucia was excited to stand on the spot where Martin Luther King had shared his dream.  She chuckled at the thought that the actual highlight of the trip for our transplant swimming medal winner was meeting another swimmer who had also won a few medals, the Olympian Michael Phelps, and her chance to tell him about the Transplant Games and leave him with a Live Loudly Donate Proudly card.

Lucia, Michael Phelps and Emily

A few months later, Lucia was invited to speak at a Methodist residential conference.  The theme was “I have a dream…” She was asked about hers.

“…initially I just thought, well, my dream is for everybody to be an organ donor.  So, that is still one of my dreams. 

But then I thought about it a bit more and what an organ donor really is, to me, is somebody who has turned quite a negative, sad, situation into something that’s so positive and has benefited so many lives afterwards, and I think my dream, I would say, is to turn negative situations, or what’s construed as a negative situation, and to find the positive in it, so to be in that dark room and to find the little flame of a candle and let that guide you.

Through everything that I’ve been through there are people that will say how do you stay so positive; how do you keep going?  I think there are obviously people that are naturally positive, but mostly it’s a choice, it’s a choice to be thinking forward and not looking backward, and it’s a choice for me every day to try and find the positive things in little situations that will help me just to make the most of my time here.  We never know what’s going to happen to us, and I think by just trying to find little glimpses of hope, or positivity in anything that you come across in life, would be my dream, my message, to try and find the little flame in what might be a very dark room.”

Twelfth day of Christmas. (Far too soon…)

Music can be a vehicle for emotions when words fail, answers run out and feelings run deep and linked to the personal stories in these 12 days of blogs, it’s a vehicle with a powerful engine.  Listening to these 44 contributions, over two and a half hours of music, and turning them round for each day has, for us, been an experience of visiting, in some cases revisiting, some of their personal highs and lows with these friends.  They have each given generously not just a few song suggestions but honest and candid glimpses into some quite intimate experiences.  A brave gift, to be received gently.  To quote the poet…”Tread softly, because you tread on my dreams.” (WB Yeats.)  So, to all our contributors, in the words of Abba (nearly), “We say thank you for the music, for giving it to us!”  Thank you.

Two songs in particular have become popular anthems for occasions when many of the transplant family are together in one place – and that’s usually at the end of the Transplant Games – sung by all with vigour and emotion.  We started with an instrumental version of this first classic, another version made it onto an NHS Charity single, many others have made it their own, and we’ll add the song again because, well, because we hope it’s true…You’ll never walk alone, by Gerry and the Pacemakers.

And we’ll give the last song choice to Sara, a paediatric dietitian and, until last year, much-loved Team Manager for the Birmingham Children’s Transplant Team.  It’s been mentioned by more than a few, it’s in the heart of the Birmingham team, but the sentiments are echoed with the same conviction, poignancy and joyfulness by countless others who know the trials and rewards of transplants.

“I read the request for music with interest…and before I could finish the thread, I could hear the team belting out We are the champions, by Queen, loud and proud in my head. Seeing them all, arms draped over each other in that circle of champions ❤️.  Each one of the young people, parents, family members & health care professionals really knowing what it took to become ‘champions of the world’.  How hard the fight had been and continued to be.  And each of them singing at the top of their voice – for themselves, their families and their donors…ALL champions!!!

Thanks for being with us for these blogs, if you have.  Thanks for the ‘likes’ and hearts, reposts and whatevers on social media.  Do be a champion and sign up, it really takes less time than listening to any of these songs and may have an affect that lasts a whole new lifetime.  Most importantly, please make sure your family know.  And, if you’ve done all that already, play the music and start another conversation with someone else. Any stone in this pool creates ripples and makes a difference.

May the New Year be kind and gentle with you and yours…

Sara (centre), with Lindsay (left) and Jemma (right) 

Eleventh day of Christmas.  Charlotte said something so simple and poignant in her contribution to the playlist yesterday, with her choice of Hold on we’re going home, by Drake.  “I used to listen to it in hospital and it made me feel so lucky that I was going to get better and go home, as I knew not everyone would.”

It’s a reality in the transplant world, a reason why renewed life and all the varied pieces that make up its mosaic are even more likely to be held closer and treasured.

NHS Blood and Transplant figures for the period April 2023-24 record 4,570 transplants.  3,712 were transplants from 1,510 deceased donors.  

In the same period, over 415 people died while waiting on the transplant list.

When a person’s decision to be an organ donor is known, 9 out of 10 families will say yes to donation.  If they are unaware of their loved one’s decision on organ donation that consent falls to about 6 out of 10 families.

That’s some of the ‘why’ of Live Loudly Donate Proudly.  To encourage conversations, soon, now, rather than ‘tomorrow’, potentially reducing the waiting list, giving someone else a better chance of a transplant, and the best opportunity they can have to go home.

Behind those statistics are people: each donor, each person on the waiting list who didn’t get to go home, loved and honoured by someone.

And not all transplants are free from complications.  Sometimes, as a friend said recently, however strong you are, none of us is stronger than the universe.  Some of our transplant recipients live lives that are all too short, however brightly they shine.  Alongside those donors whose lives have saved others, the transplant family carries many other names that are equally treasured.  Those with whom we have laughed, cried, danced and ached in hope.  Those who didn’t come home.

In September 2018, Lucia’s blog was a moving tribute to her dear friend, Luke Biggs.  Today’s playlist contribution is from Luke’s family, ‘the Biggsies’.  With their characteristic humour, fun, and honesty.

Over to you, Biggsies…

“Mariah Carey’s, gastro related Christmas song, All I want for Christmas is poo – sorry – you. Particularly when in hospital over several different Christmases after a gastro related procedure or two. ‘We’re waiting for bowel movement as a sign of success.’ Hence all we want for Christmas is poo.

Wiz Khalifa, See you again, is from Fast and Furious 7. A franchise of films Luke really enjoyed, but 7 was the last one of the set Luke saw. He went into hospital just one month after seeing it in the May of 2015 to never come home. Certainly now a tear jerker for Luke.

Fat Boy Slim, Right here right now, relating to you gotta just get on with it, no one else will do it for you, and Elvis, The wonder of you were both songs The Arsenal would come out to before football matches which Luke enjoyed being at. They were also music played at Luke’s funeral. He entered the church to Right here, right now, receiving a standing ovation. Not something you’d expect to see in a church. The wonder of you was the piece of music he left the church to, but also, just how the lyrics relate to our children and how amazing they are, all of them, always.

One last one. Happiness, by Kasabian, one of Luke’s favourite groups from his brother Adam’s playlist he chose for Luke to listen to as we comforted him in his last hours in this world.”

The Biggsies

Tenth day of Christmas, and today’s songs come from Charlotte. 

How these friends managed to narrow their songs down to a few contributions for these blogs, even with the overlapping choices that underline their shared experiences so well, is hard to imagine.  Has to be a tough job.  When they are all together at the Transplant Games, or wherever, music and dancing are never far away.  Nor is laughter.  They have enough in common already in their stories of health and hospitals and medications and procedures, any opportunity to share the joy of being together is a gift to be relished.  It’s their eloquent tribute to their donors and donor families, to their own families, their friends, and to the gift of life.  No surprise then that some of the songs are repeated.  And for some, when there’s an opportunity to sit together in the lap of a koala bear, it just has to be taken…(see below!).

Thank you, Charlotte, for these songs, and the places they take you…

“My Love, by Westlife – I love Westlife and we used to listen to this song when I was in hospital and was apart from my family, reminding us we would all be back together one day.

You’ll never walk alone and We are the champions are both Transplant Games favourites, probably been given by everyone! (So true, Charlotte!  More of this to come on day 12…)  They bring us together and remind us we have all been through our own journeys that people in the ‘outside world’ can’t always relate to.

Superheroes, by The Script and The Climb by Miley Cyrus.  These two just make you think about how far you’ve come and everything you’ve been through to get there.

Hold on we’re going home, by Drake.  This one might be a bit of a random one, but I used to listen to it in hospital and it made me feel so lucky that I was going to get better and go home, as I knew not everyone would.”

Charlotte (left) with Lucia

There’s no shortage of images in the last song for today, contributed by Jane, the mum of a transplant recipient.  Like Keeleigh, Jane’s son, James, is part of that whirling, dancing, caring group of friends from the Transplant Games, and no stranger to climbing the medal winner podiums.  His climbing also includes many a high peak, including Ben Nevis, Scafell Pike, and Snowdon all within 22hrs 39 minutes.  Just as courageously James shared his transplant story in a blog for Live Loudly Donate Proudly in September 2018.

We often talk of the transplant journey and its hospital adventures and misadventures, as a rollercoaster.  Highs and lows, out of our immediate control, taking us where it goes, like it or not.  Sometimes, some of us begin to dread the mention of the word, with all its connotations.  An attentive listening to Jane’s chosen song, Windmills of your mind, sung by All Angels, offers an echo of the dizzying experience and mental entanglement for those intimately involved in the world of transplants.  Like a snowball down a mountain, or a carnival balloon…a clock whose hands are sweeping…

Jane

Eighth day of Christmas.  Two guests with musical contributions today, Zoe and Alicia.

Our first is Zoe, a friend who seems to muster remarkable reserves of energy to train for competitive table tennis, and win an impressive medal and trophy count while also managing a rigorous renal dialysis regime.  That takes its toll, and more than the medals might suggest.  Zoe helps to raise awareness about chronic kidney disease, and organ donation, through her Instagram and Facebook platforms, “Keeping it renal”.  Have a look – but listen to Zoe’s and Alicia’s contributions before you leave us!

“The first song that comes to mind is The Climb, by Miley Cyrus. It talks about moving forward. ‘There’s always gonna be another mountain, I’m always gonna wanna make it move, always gonna be an uphill battle, sometimes I’m gonna have to lose, ain’t about how fast I get there, ain’t about what’s waiting on the other side…it’s the climb.’

The second song for me is one I connect with my mum donating me my first (kidney) transplant. You make it real, by James Morrison. ‘Everybody’s talking in words I don’t understand, you got to be the only one who knows just who I am. You’re shining in the distance, I hope I can make it through, ’cause the only place that I want to be…is right back home with you.”