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.”

Seventh day of Christmas, and another blog from a good friend, Lucy Aur.  Lucy and Lucia met and became friends in Kew Gardens when both had been invited to be Ambassadors for ‘iWill’, a campaign to raise and encourage the voices of young people.  Lucy founded and runs Renegades Foundation, ‘making a noise about silent struggles’.  Check it out on the web link, or Instagram – but try this blog from Lucy first…

“Get up at 5am, start running, run 10k, run a marathon, complete an Iron Man, blend and drink your greens, ten step skin routine morning and night, less carbs, more protein, less phone time, more side hustle, loose weight but gain muscle, clear your room but buy this light up mirror someone with 200k followers told you will change your life, travel but save your money, embrace your youth but settle down soon, cut down and cut out until you’ve burnt yourself out.

In summary, change yourself and punish yourself when you don’t completely change your life by Spring.

To me, traditional resolutions come with feelings of disappointment and guilt. Because they are rigid and stressful and rarely fit in with our work and personal schedules. At the end of the year we look back and berate ourselves for the places we see we’ve failed, instead of accounting for the many many ways we have lived and loved and grown.

A new year is supposed to feel like a celebration. An excitement for all that is too come, all that we will experience that we can’t possibly imagine yet. Usually I write about the struggles of the festive season, grief and anxiety and pressure. And while all those things are still present, this time it feels poignant to put thought into something that can make a positive difference and that is easy to achieve.

I don’t want to start a new year planning all the ways I have to change myself. I don’t want to end a year regretting all the ways I didn’t change myself yet. I don’t want to kid myself into taking up Pilates because it’s the latest trend when I already know that it doesn’t make me feel good.

My value doesn’t change when the clock strikes 12 on December 31st. My wants and needs don’t change on January 1st.

Here is what I do instead.

I don’t change myself; I see it more as adding to who I already am. I don’t have resolutions, I have intentions.

In 2025 I don’t have any plans to improve my 5k time or cut out sugar.

I intend to swim in the sea at Ogmore with my best friend because she said she loves it.

I intend to eat the fruits I haven’t tried before, not because they’re healthy but they look like they’ll taste delicious ands there are so many fun ones to try.

I intend to write down the good moments, no matter how seemingly small. Not to share with anyone, but to remind myself.

I’m going to read more poetry after having my head in academic books for so long. I’m going to bake bread simply because I tried it the other day and it was surprisingly easy. I’m going to learn more British sign language, find new music to listen to, put flowers in the window more often.

I intend to fill my life with lovely things, with bright places, not supress my personality or compare myself to strangers on the internet. All of our goals are different because our priorities are different. We can’t compare our lives because we are all different people experiencing different challenges and striving for different feelings.

This isn’t to say that the conversations around new year’s resolutions are wrong, more that they’re misguided. This isn’t to say that we should never strive to better ourselves, to try new things and give our bodies and minds the best chance, to care for ourselves, to experience new things and push our comfort zone. But to say that we should do these things out of genuine desire and love for ourselves, not because of pressure. To do it because we want to experience more of life, not because we think we lack something.

We don’t know what challenges and joy the year will bring, but what we do know is where we are now and where we want to get to. Instead of resolutions, and by focusing on our intentions, we will be able to deal with whatever comes our way.

Social media has become obsessed with the idea of a ‘glow up’ and that implies that who we are is not enough.

As I said, before midnight on new year’s eve we are already enough.

Perhaps instead of focusing on how we look and how our lives look, we should focus more on how they feel.

So when the fireworks pop and the clock strikes 12, I encourage you to celebrate where you are and who you are. To enjoy the moment and not worry about what tomorrow will bring. A lot of us are fortunate to have many tomorrows left.

Let tomorrow worry about itself.”

– Lucy

PS.  “After reading all the incredibly inspiring and moving blogs accompanied with beautiful song suggestions, I wanted to share this song with you…I’m here, by Cynthia Erivo.

Lucy’s first time as a brave blood donor

Sixth day of Christmas.  This morning five years ago, the transplant coordinator gave us news that a liver was available for transplant, tests being done to determine its suitability for Lucia.  Our wait that day in ITU was filled, not with music, but gentle conversation, unspoken thoughts.  A nurse helped as Lucia’s mum, and sister, washed, dried, and plaited Lucia’s long hair.  Eight hours later it was confirmed.  As the light had faded for another family, their courage and kindness became a gift of light for us.

There was always music for Lucia, even in hospitals where much was enjoyed by her nurses, sparking conversations and exchanging songs.  A “Sleepy” playlist helped to distract, and nights to pass.  Stay Awake, by Julie Andrews, Piece by piece, by Katia Melua, and Sweet Silver Lining, by Kate Voegele, and her acoustic version of It’s only life.  There was music post-transplant, too, Lucia working hard with her physio team to her own chosen song, This girl is on fire, by Alicia Keys.

After her transplants, Lucia worked as hard as she could to get back to the dance floor.  Any dance floor – our front room, a disco, the local night club, parties, gala dinners and, above all, the Transplant Games.  She lived with a soundtrack in her head, making playlists with lyrics that were almost “notes to self” – and playlists for others, for parties, birthdays, the gym.  “Dancing is, like, my thing.  Even before I had any kind of (illness)…I think I was always a very bubbly, bubbly person but it’s made it, multiplied it, like a million times over!  If I hear a song I like, I just…I will not sit down…  And then you try and get other people up, and it kind of becomes infectious…”  It did.  Galway Girl, either song, by Steve Earle and Sharon Shannon, or Ed Sheeran.  Belle of Belfast (Tell me Ma), by Sham Rock.  Run the world (Girls), Beyonce, and so much more.

Slowly recovering in hospital after her second transplant, for a while Lucia was particularly withdrawn and silent.  We asked what music she might like to hear.  She dug deep and suggested a track we had to hunt for.  When we eventually found the CD Lucia was after, there were smiles in the room again as she started to listen, and move, to Amenitendeya, by the Mwamba Rock Choir.  This Ugandan Children’s Choir had performed in her school and Lucia revisited the exuberance of the young African girl who had embodied joy and gratitude in her widest of smiles and boundless energy. “My hands nearly dropped off I clapped so much.  Nobody wanted them to stop,” Lucia said.  “Mrs McBride let us put the CD on in the class while we worked.  We all sang along with it.  She knew it would help us do our work.  It made us happy.”

One morning, a letter arrived for Lucia.  She’d been chosen for the GB/NI Transplant team to compete in the World Transplant Games, in Sweden, 2011.  Her delight flowed as she sat on her own at our piano and played and played, no music in front of her, improvising out of sheer joy.  Untrained though she was, the sound caught our attention that evening, and we caught half an hour of it on tape.  Years later, her friend and former music teacher “tidied it up a little” for ears more delicate than her family’s as we prepared a celebration of Lucia’s life.  A beautiful expression of Lucia’s joy at belonging to the team, and the “transplant family”.  We can’t include it in this blog, so you’ll just have to imagine.

On that same tape was an earlier recording of a younger Lucia, singing at the top of her voice – in the bath.  Lines from two songs, over and over, with great, uninhibited enjoyment.   The first is I will always love you, by Dolly Parton. Then a momentary pause in Lucia’s singing and, in her best attempt at a Dublin accent (don’t ask), “I will always love you.  I will.  Always.  Always.”  Then her singing started again, with renewed energy and abandon: The Beatles, Ob-La-Di, Ob-La-Da, life goes on...

Fifth day of Christmas, and a guest blog from a good friend with a story to tell, and a song for our playlist…

“Hi, my name is Connie Taylor.  I was kindly asked by Live Loudly Donate Proudly if I wanted to write a bit about myself as what I like to call a Transplant-ee, and of course my immediate response was yes.  I don’t see myself as a seventeen-year-old university professor about to impart wisdom worth 22 Carat Gold, but I do hope I can shed some insight into the life of someone who (like the incredibly and admirably brave Lucia Quinney Mee) has gone through the strange and wonderful experience of a transplant, in the hope of inspiring others to learn more about it for themselves.

I was born in 2007 with a condition called Megacystis-microcolon-intestinal-hypoperistalsis syndrome (also known as Berdon syndrome – much easier to say!).  It is a condition that meant when I was born, my digestive and urinary organs had no muscle function.  Because my digestive system (stomach and intestines) didn’t work it meant that the only way I could be fed was intra-venously.  The downside of this was that my liver didn’t like it, and I ended up with severe liver disease.  So not only did I need a new stomach and intestines (small and large bowel), after a few months I desperately needed a liver too.  After 13 months of waiting and wishing, my parents finally got the call to say they found a match suitable for me to have my liver, stomach, pancreas, and bowel transplanted.  Unfortunately, it is currently not possible to have a bladder transplant so the need for catheterisation will always be a constant for me.

Thanks to the bravery of a young mother, whose son had sadly passed away in an accident, this young boy saved the lives of me and at least two other people and is someone I am eternally grateful for.  The choice to donate his organs gave me an opportunity that cannot match any other gift, the gift of life, and a second chance that must never go unrecognised.

This 12-hour transplant surgery, which included the removal of my spleen to ‘make room’, and removal of my appendix in case it should ever give me problems, was the first of many and varied surgeries. Unfortunately, being so small at the time of my transplants, there wasn’t enough space in my abdomen to fit the donor large bowel in, so this meant living with just a small bowel and an ileostomy (stoma) bag.

From transplant until now I’ve had many other issues; my new small bowel had ‘plumbing problems’ in 2014 (many tubes were tied, so to speak), I had a little bit of my own large bowel left in during the transplant, but this caused me no end of problems and was, literally, being a pain in my backside to put it very lightly! I eventually said sayonara to this bit of my own bowel in 2021 – my decision.  This was a major operation and meant I ended up with Sepsis, but it was worth it in the long run as that diseased bowel was not doing me any favours!  I said cheerio to a gastrostomy device in 2023 which used to give me nutritional feeds and liquid medication.  I also said hello to the use of a self-catheterisation device in 2022 which meant I no longer had to pee from a leaky suprapubic catheter tube, and I said ‘good to have you’ in the same year when I finally made peace with the inevitable reality of having a permanent ileostomy/stoma bag.  All things considered, you could say I had more of a spring in my step this past year, and all for very good reason.

Of course, growing up with this condition presented itself with many challenges such as the trips to the operating theatre which became a very difficult task for a long time, making me accidentally develop PTSD for a while (oopsies).  Yet, through the help of the wonderful child psychologist Dr Susie Willis, from Royal Belfast Hospital for Sick Children, I overcame my fear of anaesthetics and became more of a ‘cool cucumber’ when it comes to surgery.

On top of this, we cannot ignore the absolute rollercoaster that is school and navigating it, alongside a condition named longer than the alphabet, while everyone else’s worries seemed to only stretch to who said what at break time in the PE toilets!  If I’m honest, I never fully understood my medical condition for the majority of my childhood primary school years and I was a very reserved and shy person when it came to anything medical, so for about 16 years until sixth form in secondary school, I never mentioned it to anyone aside from my close family. But recently, my hospital experiences have somewhat faded out into the background, and I find myself being more open to other people.  That’s not to say I can’t still improve, but who doesn’t when it comes to confidence?

In hindsight, my life experience so far is something I am truly grateful for in a bittersweet way.  It has helped me become a very grateful person and approach things rationally with a positive outlook, despite my teenage cynicism at times.  This unique perspective of life has taught me many lessons and is probably worth more credit than I give myself now that I’m actually sitting and reflecting/typing about it!

So, as I write this during a free study period in my last year of A-levels (English Literature, Moving Image Arts, Performing Arts) with a self-catheterisation tube in my blazer pocket and a spare stoma bag in my schoolbag, I’m pretty excited for a future where hospital is something to very rarely think about. I do hope to pursue a career in the film industry and want to spread awareness around organ donation on a bigger scale, inspiring others to learn how they can one day save a life too.

Also, my song suggestion would be Pencil Full of Lead by Paolo Nutini –  a song which reminds me that even if there may be a multitude of problems going on around me, I still have all I need to get me through it.”

Connie – star performance as the Scarecrow
(School production of Wizard of Oz, Christmas 2024)

Fourth day of Christmas and four more songs for the Live Loudly Donate Proudly 12 days of Christmas Organ Donation Playlist.  And we hope you can find a snappier title for your playlist than that…

Today’s contribution is from Megan, who, when we first met her, was one of those incredibly attentive, skilful and caring nurses working in a Liver Intensive Therapy Unit (LITU).  (She is still all of those things, of course, just not working in the same place.)

Intensive care is just that – care that is intensive, in detail, attention, sensitivity, intuition, professional skill and practical love.  Not surprising that the intensity should be reflected in the range of emotions in Megan’s gift of these songs.  We add them to our playlist with resounding gratitude for all those ready to care for us in these exceptional places.

“Nick Cave – Into My Arms. This is an emotive song for lots of reasons, and one I strongly associate with LITU.

Kamasi Washington – The Rhythm Changes.  A song which always makes me feel good, and I regularly used to put on after a shift to get me back to myself.

Captain Beefheart – I’m glad.  Another song I find emotive, but sometimes we all need a good cry and this can get me going.

Bettye Swann – (My Heart is) Closed for the Season.  I had this on before I went to one of my last Christmas parties with LITU before dancing all night long with some brilliant colleagues. Reminds me of a brilliant night.”   

The third day of Christmas and three more songs to savour, and to add to the transplant playlist.  They are the gift from Lucy and Ben, the mum and dad of Charlie, a young boy who needed a transplant when he was only a few months old.  He’s a young teenager now, and packed full of music and dance himself.

As well as the music, their words are also a gift, an honest and vulnerable insight into some of the most intimate moments of a family on a transplant journey.  Listen to the music, add them to the playlist.  Sit with them for a while and remember that behind the music, someone said yes to organ donation.

“Music is just the best thing to make someone happy, or to make somebody sad, and I think that’s amazing. Music really is quite poignant in our journey… There’s two songs specifically, for me.  There’s one that I used to sing him when he was in his cot, waiting for him to wake up, needing feeding, or nappy changing, while we were in hospital.  I’d sing it to him then and I still can’t listen to it 14 years later, which is Make you feel my love, by Adele. I sang it just like Adele, obviously…  

There’s one particular verse…just looked it up and it makes me a bit emotional.

I know you haven’t made your mind up yet. 
But I would never do you wrong.
I’ve known it from the moment that we met.
No doubt in my mind where you belong.

Then, a lovely one was when we were in Intensive Care, post-transplant, and I asked for music because I listened to a lot of music while I was pregnant and he used to wiggle around and he loved music and still does now, so I asked one of the nurses to put the radio on in our little room, and the first song that came on was I can see clearly now, the rain has gone, (Johnny Nash) and I just remembered standing over his cot…and, yes…it’s a really good song.   That was a really happy song and I have it printed up in a picture on my wall. It’s a happy song.

Ben’s song is Three little birds, (Bob Marley) because he likes the message that it gives.  It’s a little bit more chirpier than mine, and obviously we’ve got very much of a reggae theme in our house, unknowingly, but he likes that song because, well obviously, we’re like three little birds…

Music is such a powerful gift, and I believe that those songs were gifted to us in those moments to send us a message of hope. Who knows if that’s the case, or if it was just coincidence, but either way, they are mighty powerful and will remain in my heart always…”

Day 2 of the Christmas blogs, and the first contribution from our guests is from Faye, a nurse and former transplant coordinator.  These are the incredible people who join lots of dots, making it possible for organ donation to happen and be the miracle that it can be.  They communicate with transplant centres and medical teams, coordinating the opportunities for organ donations throughout the UK, making sure organs get to the right place quickly and in optimum condition.  They talk with patients and their families. They are the ones who keep in touch with families during the transplant operations, bringing news and updates from the operating theatre.

“When thinking about patient journeys, wherever the end destination may be, this beautiful version of You’ll never walk alone, by Nina Simone, comes to mind.  As a nurse caring for patients on a transplant journey I certainly wouldn’t have wanted any patient or their family to walk alone; I would want them to know we are always there for support.  I think this song also recognises that sometimes that transplant journey can be a very challenging one.

This is a beautiful instrumental version of the song.  Perhaps not surprisingly, this song was suggested by a few people, so more of it to come…