On the tenth day of Christmas my true love gave to me… Ten Lords a-leaping.

This blog is usually written from Northern Ireland.  We’ve no local equivalent to the House of Lords.  Any Lords or Ladies from here must leap over to Westminster to go about their business.    While they are a-leaping about over there, the N Ireland Assembly, Stormont, gets on with its own business, including shaping new laws.

One of the Bills going through that process here aims to introduce the opt-out system for organ donations.  If the Bill is passed, adults in N Ireland will be considered potential organ donors unless they choose to opt out or are in an excluded category.  It would bring N Ireland into line with Wales, Jersey, England and Scotland, where the opt-out system is already in use.

Last year, the Bill made it through the First and Second Stages in the Assembly.  In December, the Health Committee scrutinised and approved it, clause by clause, line by line.  It now goes back to the Assembly for more debate and then a Further Consideration Stage.  The Final Stage is one last opportunity for debate in the Assembly, with a vote on whether to pass the Bill.  If passed, it is formally given Royal Assent and, at the next full sitting of the Assembly, it is announced and becomes an Act of the Northern Ireland Assembly, a new law, usually coming into effect at once.

There’s a lot to do.  There are elections due here in May and thirty Bills on the table.  If it doesn’t get through before then the whole process goes back to the beginning and starts again with a new (or newish) set of politicians.

Meanwhile, about 115 people are on the transplant waiting list in N Ireland.  Across the UK, there can be more than 6,500 on the transplant list in a year.  Experience is strong that the opt-out system can lead to a higher number of organs becoming available, therefore saving more lives.

Donation will remain a personal decision.  Anyone can choose to opt out and not be considered a potential donor.  But no organs will be retrieved without the full consent of the family or loved ones.  Specialist Nurses will always talk to the family, and unless the family give permission, it all stops there.

Which brings us back to the aim of Live Loudly Donate Proudly – to encourage those who choose to be willing organ donors to be loud about it – to sign the register, to talk to family and friends and let them know your decision.  It makes a difference.  Only 5 in 10 families are likely to give permission unless they know it was their loved one’s wish to be considered a potential donor.  Then it leaps to 9 in every 10.  As only 1% of all UK deaths are likely to happen under circumstances allowing organ donation, that leap is a lifesaver, many times over.

Let people know what your decision is, what you would like to happen if the circumstances of your death allow organ donation to be considered.  Let people know and be proud of it.  More conversations mean more transplants.  More transplants mean more lives saved.  So, Lords, Ladies or whatever, leap to it…

 

On the ninth day of Christmas my true love gave to me… Nine Ladies dancing.

Music, dancing, and lots of it, seems a pretty essential part of many organ transplant stories, and not just for nine ladies.   Not for everyone, true, some aren’t always mechanically up for it, and a few others prefer to sit it out and watch (How do they do that?  They still twitch in time to the rhythm of the music even in their seats!) But for the many others…

Like a friend of ours who went through an unusually complex liver transplant which needed repeating immediately, her life held for a time by an incredible team of people and an ECMO life-support machine, doing the job of heart and lungs until she was able to do it herself. Many weeks in an Intensive Therapy Unit and then, within twelve months, a flame of energy, spinning for hours through a glittering disco, dancing the New Year in.

Like all those discos at the Gala Dinner nights at the closing of the Transplant Games.  Whether you actually get up and dance or not, it’s hard not to sing along with that unofficial Gala night anthem for one particular team –

“We are the Champions, my friends
And we’ll keep on fighting till the end
We are the champions
We are the champions
No time for losers
‘Cause we are the champions of the World…”

No time for losers?  That line could do with a tweak for our context if Freddy Mercury and Queen wouldn’t mind.  Maybe they’d understand.  “No one’ s a loser.”  Not at the Games.  Before anyone even gets near the starting line, everyone is already a winner, a champion.  Each person, from the tiniest and newest to those with most years under their belts, has come through remarkable, even unspeakable trials to get to this point.  And those who may be last across the finishing line are as honoured and applauded as the first, the first ones home often cheering the loudest for the last ones to come in.

To see those who can collapse on a bedroom floor in tears of exhaustion and anxiety also take to the dance floor with exuberance and dance as though no-one is watching – though we all are – dance with a depth of honest, abandoned joy that couldn’t be sourced from anywhere but that deepest place of gratitude for each second’s gift of life, should be infectious enough for all of us.  Even those of us who don’t (normally) dance.  And the music is an experience of heightened awareness where every note, word, beat, every step on the dance floor, is a way of saying thank you.

“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!  It’s…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, I think, or at least I hope, you know?  I want to pass it on to people because when people are upset or they’re down about things or they’re just annoyed about the day… it’s…you’ve got to…I feel lucky, it’s almost, I feel, like it’s easier for me, to kind of not be annoyed about the day, and so I want to spread that and say yeah, you’re annoyed about the day but look at this! look at this! look at this! so you could be happy about these things, you know?  And it does, you know, the majority of time it kind of cheers people up – and that brings me even more joy!”

From the very First day of a transplant Christmas, a donor truly gives…the joy to fuel the dance.

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.