On the twelfth day of Christmas my true love gave to me…Twelve Drummers drumming.

So that’s it. Twelve days of Christmas, twelve blogs. Twelve drummers to drum up conversation about organ donation.

Many people who have had transplants, or have supported their loved ones through the transplant process, or who are waiting, waiting, waiting for a transplant to happen, go to much more extraordinary lengths than blogs to drum up support and awareness.

Like the Great North Run, the largest half-marathon in the world. Two good friends of ours, Millie and her mum, Alison, completed the Run a few months ago (story link), celebrating the twentieth anniversary of Millie’s liver transplant and raising funds for Children’s Liver Disease Foundation.

We know Millie recovered well because in November we watched her on the BBC as she pedalled thirty miles as part of the Rickshaw Challenge for Children in Need (story link). “It was incredible to be a part of this challenge,” Millie said, “and have the platform to get the word out there about liver disease and organ donation. To know that we are helping so many other people and projects across the UK is amazing.”

Lots more transplant recipients and their families have cycled, walked, swum, abseiled, climbed, even jumped out of aeroplanes with parachutes that don’t open until a long way down to raise funds and, most important, to get those conversations started.

Another friend of ours, so moved by his daughter’s experience with a lifesaving transplant, shaved his head and had it tattooed to raise extra support for the Children’s Hospital.

One little boy, Dáithí, and his parents, lobbied every politician they could find to promote awareness of organ donation, and then enlisted the support of giants for their campaign – the Belfast Giants, the first professional ice hockey team on the island of Ireland.

Dáithí is five years of age and on the waiting list for a heart transplant. His dad, Máirtín, says, “Talking about organ donation doesn’t have to be this very depressing, serious conversation; it could and should be more like, ‘in the event that anything was to happen to me, I would love to give the gift of life’ – that simple conversation could spark someone taking the steps to join the organ donation register.”

And the Transplant Games, of course. One, huge, organised way to bring together a few thousand people in a mosaic of fun, courage, and gratitude, building a picture of lives made new through transplants. Like a whole steel drum band of awareness raising.

If you’ve read, liked, shared, or supported these twelve days of blogs in any way, thank you. If they are useful in sparking those conversations, even better. If you’re already banging the drum for organ donation, brilliant, thank you even more, and all strength to you. If you haven’t yet, then start tapping, follow the beat of your heart, and see where it leads… And may the year be extra kind to you.

On the eleventh day of Christmas my true love gave to me… Eleven Pipers piping.

Who pays all these pipers?  Eleven of them today and probably eleven more tomorrow.  What would that cost?  It’s no surprise to find that some people have wondered how much all these gifts might set you back and gone off to work it out.

In too many countries, an organ transplant would cost much more than all the 12 days of Christmas gifts together, however that’s calculated.  In most countries it needs heavy insurance cover to make it possible if it’s an option at all.  Taking on that first gift from a donor is beyond the reach of the majority.

In the UK, thanks to those with vision and commitment and courage who pushed against the odds, we are blessed with the NHS.  That means access to an incredible quality of skill and care, machinery, and medication no matter what our financial or social background.

If you really want to, you could dig around to work out an average cost of a transplant.  Don’t forget to include the cost of all the staff, the wards, the operating theatre, the radiologists, the physios, the…well, everything and everybody on an enormously long list.  Then there’s the medication and years of after-care.  All those appointments.  In some cases, there is support for travel to and from the hospitals, even accommodation for family, especially when the patients are children.

It really is a very long list, far too much for a short blog.  Just imagine all that cost. Imagine it was spent on you, to save your life.

Then forget it.

It’s not about that.  Yes, it needs to be found and managed.  And, so far, from our taxes and national insurance contributions, our welfare system manages to deliver an outstanding level of quality care, free at the point of need.  That level of care and kindness goes well beyond any budget-line.

Even when the NHS slips and doesn’t manage to match its own best standards or is under immense stress and strain as it is right now, most of it, for most of the time, thanks to the teamwork of its outstanding staff and their commitment to go beyond the extra mile, continues delivering the excellent life-saving service we are used to.  So far.

In the case of organ transplants, the NHS becomes the skilful steward of another gift that goes well beyond any price.  On top of everything that the NHS is for most of us, there is a gift that even they are in awe of – the gift of organ donation.  And that’s in the hands of each one of us…

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.