On the eighth day of Christmas my true love gave to me… Eight maids a-milking.

If you do some intensive research (or a bit of googling on a mobile phone), you’ll find several different ideas about why there are eight maids a-milking in this song, and what it may mean. Then you have a choice. You could explore all these speculative interpretations and maybe write a thesis about them, or just keep it simple, take a breath and well, sing it if you want.

If you come to the world of organ donation from the sharp end, through organ failure, yours, or in someone very close to you, you’ll have a similar choice. You are likely to learn a lot, very quickly. How blood samples give clues to how your body is functioning, and what it might mean if certain key numbers are higher or lower than your own average. Things will be explained, even drawn, by consultants and surgeons to help us understand what’s going on, what’s working or not, what needs to be done to fix it.

You may learn about a range of “procedures”, other medical interventions that are not always as invasive as transplants. Biopsies, and others with complex or descriptive names. Sometimes the name describes the procedure, like percutaneous transhepatic cholangiogram (eh? – look it up if you must). Sometimes it is named after the person who first used the technique, like the Kasia procedure named after Morio Kasai, a Japanese paediatric surgeon working on biliary atresia.

You’ll learn about a variety of medications too, like tacrolimus, prednisolone and ursodeoxycholic acid, immunosuppressants and steroids and some to ease the side effects of others.

It can all seem very complicated and daunting as you sit at the edge of the hospital bed about to be discharged after a transplant, sent home with a green plastic bag or two, or three, of medication to keep you going until your local chemist, or the specialist couriers can start your regular supply. For those who need to know, it soon becomes familiar, and the experts won’t be far away.

There’s plenty of opportunity for new learning if you want it. Groups such as CLDF,  Kidney Care UK and The British Heart Foundation, provide excellent resources, plain language “road maps” to help recipients and their families and friends find their way in this new world. Some even buy textbooks to take them deeper, and others begin careers in medicine, bringing the benefits of their personal experience and empathy to the care of others.

But, as knowledgeable as you and your loved ones may become, that’s not the reason for a transplant. Not to become a medical expert, but to get back to enjoying the everyday, simple things that make our lives so rich. And the intensity of a transplant can cast a new light over those simplest of things. Like the chance to stand up from the sofa and walk down a street where before your body wouldn’t let you. Or to go for a walk and feel cold rain on your face, just because you can. Or take a deep breath all the way to the bottom of your working lungs and know that breath, each breath, will give you strength. Or sit on a beach, “…in the freezing, warm, windy, cold, rainy or whatever, and just sit there and look at the scenery and things that you’d never really think a 17-year-old would enjoy. Just being there means a lot more because I know I’ve chosen it for myself, and I know that I have fought to get here to where I can just enjoy things and actually be alive and live in the world.”

Keep it simple. Have the conversation about organ donation with somebody else, and make sure your family know what you would want should that moment ever come. It could lead to a new career for someone in complex medicine. Or just give someone the chance to sit on a beach again, even in the rain, and breathe.

On the seventh day of Christmas my true love gave to me… Seven swans a swimming.

If someone delivered seven swans to my door, they wouldn’t be a-swimming.  Not unless there was a huge pond delivered as well.  So, imagine them on a lake, or better still, the sea, with tides, currents, and waves as they do that serene glide along while paddling busily and invisibly under the waterline.

Nurses don’t always welcome the stereotypical references to themselves as saints, super-heroes, and angels, especially over the last 18 months.  However sincere and kind the references are intended to be, and however high the quality of care we receive, it is better to remember it is delivered by human beings.  People who, just like all of us, have their own worlds beyond what we see.

Sometimes their families are in other countries, sometimes ill-equipped to respond to the pandemic.  Travel reduced or just not possible.  Time off work is harder to manage as staff numbers drop hugely due to the virus and the isolation precautions that must be taken, especially when working in close contact with the most vulnerable people.

It takes its toll.  They get tired and emotional like the rest of us.  They bruise, weaken, break, and need care and compassion like the rest of us.  Often more, given the unrelenting hours they give, soaking up our fears and frailties as they focus, keeping in mind details of medications, doses, timings, symptoms, numbers on the monitors, taking instructions from the team, filling in the notes and forms, handing over to the next shift smoothly and accurately.

Some step out of clinical work for a while, or at least away from the full-time intensity of its frontline.  Others have left the profession completely.  Inside the NHS there are now some, not enough, wellbeing hubs and health and wellbeing conversations trying to support staff.  Outside, others such as the Laura Hyde Foundation try “…to ensure that all medical and emergency services personnel have access to the best mental health support network available”.

With all that fragility they strive to make it work.  And seeing our caring nurses as people like us rather than angelic beings make the quality of care and attention not less but much more remarkable.  It’s also a reminder that we need to care back.

And yes, like the rest of us, there may be one out there who’s having a bad day, or more, and seems unable to keep a bad mood to themselves.  Did you meet that one?  Are they always like that?  Do you know why?

There are many sobering sights in a hospital but one of the hardest to understand is a poster in various forms about zero tolerance of physical and verbal abuse against staff, against nurses and doctors.  There are some things that should never need to be said.  But since they do, then they must.

There are other things on the walls in our hospitals as well.  Thank-you cards.  To named staff or staff in general, for quality of care, for small kindnesses, for excellence.  That’s as it should be.  That makes it better for all of us.  That’s what you’d like to see prevail should you find yourself in those corridors.  People who, for all our human frailties, are giving their utmost in care and compassion and are recognised for it.  Acknowledged.  Properly paid.  Thanked. Respected and loved.

What’s it got to do with organ donation?  Well, obviously, there wouldn’t be any without these many, many people who choose to care and pay attention.  And our carers need caring for too.  Then everybody wins.

On the sixth day of Christmas my true love gave to me… Six Geese a-laying.

Oh dear.  This song gets more complicated as it goes on.  Don’t take it literally.  All these birds flapping about everywhere.  Very messy.  Partridges, hens, doves, now geese and there’s a load of swans still to come.  To say nothing of all the leaping lords and ladies and suchlike.  They’re not simple, these 12 days of gifts.

Nor is that gift of an organ.  Not always.  For many it does all go beautifully.  A precious gift received and welcomed with tears of joy and gratitude, and, taking all the correct medication, the anti-rejection, immunosuppressants and any others, attending the clinic for check-ups, and generally keeping fit and healthy, there’s no looking back, except for that constant thank you.

For others it’s not so simple.  Some are on “the scenic route”, the snakes and ladders game.  For all the correct medication, care, and attention, the mystery continues, and a transplant is not simply a cure.  And though the days and the years can still be shining with full and fulfilled lives, more than a share of exciting opportunities, places to go, things to do and people to meet you may never have dreamed of, there’s always something else to shift the plans, reminders that all is not “fixed” but “ongoing”.  There may be unwanted consequences, with any number or degree of twists and turns.  Setbacks.  Sometimes even a repeat transplant.  Sometimes more than one.

So, does that mean the first transplant failed?  “No, it got me to my second.  Without that first one there would have been no chance of a second, or a third… They didn’t fail.  Like a couple of branches that helped break my fall until I could land more safely.” And that next landing may be the safest of all, with many good years to come.

For more than one we know and love it has meant a shorter life than any world of hoping could bring.   Yet sparkling brighter than any of those complexities, there are countless stored treasures that are not diminished by ending way too soon, however painful that will always be. Every good day in that store shines brighter.  Every extra shared experience that might not have been, every extra holiday, every extra adventure, every extra birthday, every extra Christmas, every breath, every smile, every laugh, every dance, every hug, every kiss, every second, is a gift greater than anything bought and wrapped for Christmas.  All those apparently small things, insignificant moments, that were always really bigger and more significant than anything else, more than anyone could know.

Grief, when it becomes part of the transplant journey, can threaten to make any new Christmas hollow and lost.  But those that were shared will be treasured even more.  And the gifts that made them possible will never tarnish.

Having that conversation, the kindness of a yes in the unknown grief of strangers, was, and will always be, worth every second… Do you have a second for that…?

On the fifth day of Christmas my true love gave to me… Five gold rings.

Some say the five rings refer to goldfinches, or to the (white!) collar round a pheasant’s neck, but they’re not as easy to link to organ donations as are the five (not gold either) rings that could be a wobbly stepping-stone to the Olympics.  Then it’s a short hop to the Transplant Games.  Phew, got there.  And that’s where we’ll stay for today…

Dr Maurice Slapak CBE, a transplant surgeon in Portsmouth, was looking for a way to keep his patients fit and to prove to everyone, including his own profession, that most transplant recipients could lead fully active lives.   He was inspired by a man who had been on dialysis between six and eight hours a day, three days a week, until he was given a kidney transplant.  Four months later, he was playing football and back at work.  Dr Slapak invited him on a six-mile run with colleagues and he matched them all.  In Dr Slapak’s words, “The concept of promoting organ donation through a demonstration by transplantees that they could lead a normal life was thus born.”

The first Transplant Games were held in Portsmouth, in August 1978.  Eighteen teams from across the UK, and a team from Ireland, France and the USA, ninety-nine competitors, nicknamed by the press the “99 blooming miracles!”  The European Transplant Games and World Transplant Games (click for link) are held every two years.  The World Transplant Federation now has fifty-eight member countries.

In the UK, the Games have been celebrated every year since 1978.  Well, except for the last two years when so much changed for us all.  And that makes the next UK Games even more important.

In July 2022, the British Transplant Games  (click for link), sponsored by Westfield Health, will be held in Leeds.  It will be the first chance for the transplant community to reunite after almost two years of heightened caution.  More than 900 participants, and over 1,500 supporters are expected to attend.

All Games gatherings are a mixture of hopes and fears, of trials and expectations.  There’s always a lot hanging on that long weekend.  This time it will all be turned up a notch.  People seeing each other for the first time in a few years.  The first time since a last transplant, a bout in hospital, a graduation, a wedding.  Lots to celebrate.  Some will be missing, memories and longings trying to fill the spaces where they should be.  There will be stories, tears, wordless embraces, and broken hearts.

And there will be wonder and excitement at the achievements of athletes of all ages between three and eighty.  There will be first-timers, coming with cautious parents, partners, family, fresh from their own plunge into the fearful world of waiting lists, waiting for news from surgery, waiting to see how recovery goes, now scarcely able to believe they have all reached this new place together.  They will wonder at the miracle of it all, surrounded by experienced families, athletes, and supporters, as they try out this new family and find friends for themselves and their new champion.

First-timers will discover the easy understanding of others, the shorthand conversations of not having to explain everything, or hide feelings of being different.  Accepted, with the chance to be yourself, your transplant now just one part of your story, not the definition of who you are.  A deep sigh of release, and an infusion of courage to carry beyond the weekend.

For everyone a chance to say thank you to representative donors and their families.  Some will stand on the podium and collect a medal – “Every medal I win is a win for my donors.”

Those medals come from work and courage and commitment.  They come from gratitude and honour.  And they start with conversations.  Small conversations that can lead to gold…

On the fourth day of Christmas my true love gave to me… Four Colly (or Calling) birds.

Colly birds or Calling birds? Which version is the “proper one”, and what’s a colly bird anyway?

After a few minutes research on the internet, it seems that both are correct, colly birds is the earlier term, and a colly bird (coaly bird) is probably a blackbird. So now you know. That’s enough time on that one, though it’s clear you could spend an immense amount of time researching different aspects of this one carol, and that many people do – professionally, however obscure that may seem to many of us.

In May this year, Professor Deirdre Kelly CBE retired from her clinical work with Birmingham Children’s Hospital. In 1989, with a small team, an office in a portacabin and two beds, Professor Kelly and her team set up the UK’s first paediatric Liver Unit and pioneered the UK’s first ever infant liver transplantation. Since then, the survival rate of infants undergoing transplantation has increased from 40 per cent to over 90 per cent. Almost 1,000 liver transplants have now been carried out at the hospital and Professor Kelly has remained at the leading edge of ground-breaking research to improve diagnosis and treatment of liver conditions, not only in the UK but across the world, making it quicker to treat children effectively than ever before.

“When I began,” Professor Kelly said, “I wanted not just to set up the best Liver Unit in the world but also to make sure children and families felt welcomed and cared for. With the help of a marvellous team, I think we succeeded.” Thousands of children, young people and their families agree, including all of us at Live Loudly Donate Proudly.

Professor Kelly’s retirement from clinical work allows her to dedicate more energy to her academic research and to continue to lead pioneering, national work in Hepatitis C treatment for children.

Birmingham Children’s Hospital Liver Unit has worked closely with the Children’s Liver Disease Foundation since 1989 (check them out here). More than £9 million has been raised for research since 1980, most of it donated by families, friends, relatives, and other supporters. That research helps our understanding of children’s liver disease and improves treatments for children and young people.

Behind the scenes are people researching specialist subjects that will seem even more strange and obscure to us than this Twelve Days of Christmas carol, until we need all their skills.

How good to know there are people with the expertise, dedication and compassion of Professor Kelly, and the teams and supporters of Children’s Liver Disease Foundation, and so many more like them, committed to finding the very best ways to help our bodies and minds work to their capacity.

If you sign the organ donor register, and share your decision with your family, you can be certain that, should your gift ever become possible, it will be received with the highest level of dedication and honour, the very best care and attention of any gift you have ever given.

On the third day of Christmas my true love gave to me… three French hens (and all the rest).

The gifts in the song may be a bit strange to our ears today but we know the idea. It’s a poetic sort of memory and forfeit game, like “I went to the market and I bought…” that goes round the room and each person has to remember what everyone else bought in the market before adding their own bit.  If you can’t remember everything on the list when it’s your turn there may be a forfeit.  Fun or embarrassing. Or both. Test of memory.

Wonder how it would be if we moved it into the world of organ donation…

Something like – “I had a transplant and I had in my team…a donor who gave me an organ.”
“I had a transplant and I had in my team…a donor who gave me an organ, and a surgeon who led the operation”
“I had a transplant and I had in my team…a donor who gave me an organ, a surgeon who led the operation, and an anaesthetist who kept me asleep.”
“I had a transplant and I had in my team…a donor who gave me an organ, a surgeon who led the operation, an anaesthetist who kept me asleep, and a nurse to look after me when I woke up…”

Try it. There’s no shortage of people to include.  The list is enormous. Longer than most of us will ever really know.  Local GPs and their staff, lab technicians checking blood samples (and more), admin staff, ambulance drivers and their teams, receptionists.  Porters, cleaning staff, maintenance teams.  Nurses.  Lots of different kinds and specialities, they’re not just nurses.  Never “just” nurses.  Doctors and consultants.  Radiographers, pharmacists, physiotherapists. And so it continues…

Looking back on a transplant, especially wondering who to thank, isn’t only a test of memory, it’s a real sense of wonder at everything that has to come together and play its part if that new chance of life is to be the best it can be. They say it takes a village to raise a child. Well, it seems to take a city to help with a transplant.

Lucia, 8 years young, after her first transplant, sitting in the ward with wide eyes as she thought of the next task she was setting herself, said “How am I going to thank all these people?  There’s so many!  Do you think I could write one big thank you letter and photocopy it for everyone?”

As for so many who receive the gift of an organ transplant, Lucia’s  life became her letter of thanks.  Though so much can never be paid back to so many, maybe it can be paid forward, including encouraging others, all of us, to think about being donors, and letting people know what we decide.

On the second day of Christmas my true love gave to me… Two turtle doves (and another partridge in a pear tree?)

This song is hilarious if you let yourself imagine it happening literally.  Imagine all this lot turning up at your door over the next week and a half.  Even more entertaining if they were delivered to a wrong address…or addresses – the couriers do get twelve goes at this! Wonder where you would put all the gifts in the song? And how you’d look after them all? Especially if you don’t just get the gift of the day but, as some people imagine the song to suggest, another lot of everything that came before it, again.  Twelve partridges in twelve pear trees, even over twelve days, would be a handful, even without all the rest.

Imagine if it happened to you – how would you put that on social media for your friends? “You’ll never guess what I got for Christmas!”  It would certainly give you bragging rights. “You got a book, and a voucher for an hour in a spa for Christmas? Well, let me tell you what the courier brought to my door! On the first day… ”

Or complete astonishment at what came your way. ” You’ll never believe what I was given!”  Shocked?  Flabbergasted?  It could all be a bit (a lot) overwhelming.   If you could find words enough to tell us about it you’d be sure there were people listening.

It’s rare to come across a transplant recipient who doesn’t mention their donor, or the donor’s family, or their incredibly generous gift in some way or other.  And it’s certainly not bragging.  The true cost of the gift and knowing what it’s like for too many others who are still waiting is too much for that.  It’s thanks. And astonishment.  And wonder. And pride at such kindness and generosity. And sometimes it’s all a bit (a lot) overwhelming.  And that’s well worth making a song and dance about.

“On the first day of Christmas my true love gave to me…a partridge in a pear tree.”

Odd gift but, well, sometimes they are. We wait for all sorts of things at Christmas.  Sometimes with very mixed feelings.

Let’s imagine you’ve been waiting for something for a long time.  It started when you weren’t feeling well.   You went to see the GP, had some blood tests done and then one thing led to another until a growing – or sudden – awareness that the only way forward was through a transplant.  And the understanding that, in most cases, that would mean waiting for the unwanted misfortune of another family.  How do you wait for that?

You wait.  Maybe along the way there’s a false alarm as you are rushed into hospital on the expectation of a transplant only to find that the intended organ is not appropriate for you.  You go home to wait again.

Then the phone rings.  You’re off again.  This time it’s happening.  Somewhere in your head are your thoughts of the other family, the person who will become your donor.  You are taken to theatre, saying goodbye to those who came with you.

When you awaken from the effects of the sedative, the breathing tube is removed from your throat, and you begin to open your eyes.  Some of them are there, those who came with you.  And the nurses, the doctors, going about their complicated caring business, speaking your name gently, making you comfortable, as much as possible.

You’re back.  “It’s good,” they tell you. “All went well.  Long way to go in recovery but the surgeons and doctors are pleased.  Watching your numbers on the monitors and it looks good. You were brilliant.  Well done!”

Now it’s like a first day of Christmas.  12 days of it?  Much more – all your Christmases rolled into one.  On this first day of your Christmas, and from here on, you will never forget what your “true love” gave to you.  You may never know who she or he was.  You may never know their loved ones, those who made that decision, in their darkness, to light a candle for another.  But you will know it was love.  And it will stay in your heart and your mind.  It will stay, no matter what.

Four fallen leaves, and the light…

Today is the last day of this year’s Organ Donation Week.  Thank you for your kindness in giving time, attention and thought to any of the various blogs and posts and images, window stickers, pink ribbons, pink tea shirts or pink buildings, school assemblies and workshops, and any of the other attempts to catch your eye.  Countless diverse ways by which people of all ages and experiences have tried to tell stories of some of the hardest and brightest moments of their lives.

It didn’t take long, did it? Add up the week’s blogs on this site – how many words?  (4086) How long might that have taken to read?  According to some internet wisdom, it might take an average of about 15 minutes.  You’ve probably queued longer than that for fish and chips, or for the loo on a night out. It might not even take that long to have a conversation with your family about your thoughts on organ donation (though you could give it much longer, of course), but those few precious minutes could lead to someone, maybe many more than one, being given a chance at a much longer lifetime of joy and gratitude.

For over forty years, since the first event in Portsmouth, in 1978, Transplant Sport has hosted a fantastic celebration of life, the British Transplant Games.  Every year, in different cities across the UK, people of all ages come together to meet old friends and make new ones, celebrating the life-transforming results of successful transplants.  But these are not normal times, and this year’s Games were postponed again.  In these last two years, we have been invited instead to run or walk a distance of our choice in our own areas to honour all donors and their families.

As we left the house this morning, we carried a mixed bag of emotions.  Golden threads of gratitude and pride still shone bright in the mix.  Gratitude beyond words to four donors and their families for their selfless gifts, adding up to twelve and a half precious years for our youngest daughter and the immeasurable joy and love that allowed for each of us. Pride beyond compare at what she was able to make of those years, and her legacy that continues to catch us by surprise as it breaks the surface in new ways, new places.

We walked our circuit of about six and a half kilometres round the outskirts of our beautiful town, along the cliff edge with its gift of stunning early autumn sea views and down to a very special beach for a sit down.  And a soya latte.  Time to think, most thoughts left unspoken.  Time to be grateful to those who, when asked about organ donation, said yes, and changed our lives for ever.  Maybe this week might help prompt another “yes” somewhere and, in another moment of tragedy, add new threads of gold…