Today there’s a special Christmas gift – a two in one blog. A multi-media special.

In 2017, The Children’s Liver Disease Foundation (CLDF) invited a small group of young people on a week-long residential (“Talk, Tell, Transform”) to talk with each other about their experiences of living with liver disease, some of which had led to transplants.

The young people’s family members will probably never know all that went on in that mix of laughter, tears, struggles and support, although some entertaining stories have occasionally leaked out.

At the end of the week, the participants were invited to tell something of their own stories to camera. The short video stories shared on the CLDF website are all powerful, honest and moving. This one, from Luke, was all of that, and presented in a creative and unusual way. Just click on this link and watch how one young star chose to tell his story.

That was three years ago. Since then Luke has made the wheels turn – literally, by winning medals for cycling in the World Transplant Games. On or off a bike Luke’s not standing still.

“When I received my transplant, my donor gave to me…a chance to go to University.”

That’s to do a Media Production degree, so we can expect to see and hear much more from Luke in the future, one way or another. A gift to us all, from his donor.

 

Today’s short blog could really be a book. Maybe someone will write that later, there’s plenty of material about this eleven year old miracle who sent us today’s words to think about.

Madiee, and her amazing mum, came to Birmingham Children’s Hospital in 2013 for a bowel transplant. Most of her first four years of life had already been spent in hospital. There was another year and a half inside for tests, assessments and hospitalised care during that wait on the transplant list until the call came. Even then it wasn’t all done as Madiee developed Post-transplant lymphoproliferative disorder (PTLD), a cancer that sometimes follows a solid organ transplant.

The treatment – and all the love – worked.  There’s a whole world in these words from Madiee:

“When I received my transplant my donor gave to me…a life out of hospital.”

This year Madiee laughed and danced her way through her eleventh birthday.  Now she’s out and about, as much as many of us can be.  Maybe someday your paths will cross (come to the Transplant Games sometime and enjoy watching her participate with a thousand others).  But watch out – she’ll make you smile and capture your heart.  And that wouldn’t be possible if someone, somewhere, hadn’t had that conversation…

Are you happy in your skin? What’s that mean? You maybe are, many aren’t. Even if you are happy or proud of the colour of your skin someone else’s blindness or prejudice can cause such pain and damage that lives can be wrecked over it. People – people – looked down on as something less than enough, surplus to requirements, for the shade of their skin.

Maisie, one of Birmingham’s Courageous Heroes (Birmingham Children’s Hospital Transplant Games team) told us, “When I received my transplant my donor gave to me – skin that wasn’t yellowy.”
“When I received my transplant my donor gave to me – the chance to be symptom free.”

One of the symptoms of liver disease, and liver failure, is jaundice. The whites of your eyes grow a yellowish tinge. Sometimes it deepens, then not only in your eyes but in your skin. You start to take a yellowish tinge that can deepen significantly, even adding shades of green into the mix. It’s all about the level of bilirubin in your blood and how successfully your liver is cleaning it out – or not. The Children’s Liver Disease Foundation host Big Yellow Friday every March, reminding people to look for and pay attention to early signs of prolonged jaundice (more than two weeks) in children. It’s an important symptom, a clue to trouble that may need fixing because, for some, it can lead to the transplant list and a wait.

Meanwhile, you’re yellow. Not just on weekdays, or in poor light, but all the time. A visible symptom you carry around. It looks right back at you from the mirror every morning. You might get used to it, a bit. Until the shop assistant looks and laughs, “Are you supposed to be that colour?” Then the embarrassment all round as they realise it’s not a bad dose of fake tan but a sign that something is wrong inside. They’ll tell their friends later that day about how awkward they felt, and maybe even laugh it away. You carry it home. You feel rotten anyway so you stay in the house. You still need your friends but you’re watching and listening carefully for clues of their discomfort, trying to live as though it’s all OK. You’re still yourself, you’re just being coloured-in a bit differently. All the same, you choose not to look in the mirror before going to bed, waiting, waiting, for a call to come. It gets harder to sleep.

“When I received my transplant my donor gave to me – skin that wasn’t yellowy.”
“When I received my transplant my donor gave to me – the chance to be symptom free.”

Even within hours of a transplant the change can begin. Within days, when all goes well, you can be symptom free. Back to the colour you were supposed to be. That’s all. Your own colour. Not anything spectacular, just normal. Back to you. Your own normal shade of whatever you should be, which is pretty spectacular in itself. And the chance to feel, to know, how important, how beautiful it can be to be comfortable in your own skin. Just as we should be. No more, no less.
“On the second day of Christmas my donor gave to me… my natural colour.” Reason enough to be grateful. And proud.

So, twelve days of Christmas, here we come….

Not with the same enthusiasm as other times, but this isn’t the Christmas that many of us expected or wanted, for lots of reasons. And that’s that, no more references to that other C-word; it’s doing, it’s done, too much damage already. These short blogs will be about other conversations. Yes, about organ donations, naturally, but also a lot more besides, or beyond.

Lucia would have managed a series of blogs for these twelve days in her own seemingly effortless style, no fuss no palaver (that’s palaver, there was often pavlova about this time of the year). We needed some support from others who know about transplants so we invited some filling in of the spaces at the end of this sentence –  “When I received my transplant my donor gave to me…”

And here’s a start, from Kathryn, a swimmer in the Northern Ireland Transplant team.

“When I received my transplant my donor gave to me…a whole new family.   I refer to my transplant friends as my transplant family – people who share a common bond, have been through similar experiences, have the same outlook in life and most importantly, have the same appreciation for our donor families and for their loved one’s amazing gift of life.”

On the first day of Christmas – a whole family of families…  That’s worth a conversation.

 

In the 70s, Seamus Heaney, a great poet from the North of Ireland, summed up people’s fears of saying the wrong thing in the “Northern Irish situation” in his poem “Whatever you say, say nothing.”

Today is N Ireland’s Organ Donation Discussion Day so maybe we’ll be forgiven for twisting it – “Whatever you say, say something…”

Here’s the why (including some words pinched from Lucia’s earlier blogs…always worth a read…)

Today, Robin Swann, the N Ireland Health Minister, has launched a public consultation on Soft Opt-out Organ Donation.  (Thank you, Minister – all change starts with a conversation…)

What does it mean? Read More »

This week, it’s thirteen years since the generous gift of a donor and their family gave Lucia a new opportunity for life.  The same day marks six months since Lucia died, a few months after her 4th liver transplant and just 4 days before her 21st birthday.  Even with this immeasurable loss to our family and friends, Lucia’s light and energy continue to inspire and give strength.

Volunteer Now (Northern Ireland) have generously honoured Lucia’s life and work by creating a new award for young people’s campaigning. On 19th November the winner of the Lucia Quinney Mee BEM Award for Campaigning was announced.  These first paragraphs are taken from the participation of Lucia’s family as the Award was announced.   And then the voice of the award-winning young campaigner…thirteen year old Anna Neal from County Down. Read More »

It’s tough going for a lot of people out there just now.  And if you have to stay in and maybe even on your own, it can be tougher still.  So there’s more talk about mental health and well-being going round.  That’s a good start.  Squash that stigma. Not easy.  It’s so much easier to tell your friends you can’t join them for a meal or a night out because you’ve got a rotten cold than to mention you struggle with social anxiety or an eating disorder.

Talking about mental health is a start.  Recognising it’s about all of us and not only the few is another step. Using some more of our taxes to improve mental health resources and shorten urgent attention waiting lists would make a huge difference.

Today is World Mental Health Day and there are lots of interesting, helpful and readable resources around to surf through. We’ll add a few links at the end of this blog.  Meanwhile, we’d like to offer some thoughts Lucia posted a while ago.  It’s worth another read. Read More »

Life changed very quickly, and I became that sick kid with cancer. My life revolved around a hospital bed, chemotherapy, sickness, infection and a constant worry that my time was fast approaching.

In grief we know that those affected are not only those closest to the centre.  Funerals may gather hundreds, thousands, though far fewer in these days of Covid.  So it is with the new life of a baby, and in these stories, the new life given by a donor to a transplant recipient.  The lives of those most immediate to the new recipient change, and so do many more as the person regains their space, living more fully, even loudly.  New life, though vulnerable, is exciting, contagious, and has impact well beyond the person in the centre.  Fanni tells it beautifully here, and leaves us with two invitations – have the organ donor conversation, start it somewhere else, spread it round. It may matter more than changing the law.  Then, if you will, consider supporting Fanni’s petition to have organ donation education on the National Curriculum so it may become something we can grow up with as a natural part of living and caring for each other…

 

My name is Fanni Doroti Polgar, I am fifteen years old and I am the sibling of an organ transplant recipient. Nine years ago (soon to be ten), my little brother, Kristof, underwent a liver transplant at the Birmingham Children’s Hospital after being diagnosed with a rare genetic liver disease called PFIC (Progressive familial intrahepatic cholestasis).

I have always looked for my purpose in life, and when Kristof came into this world, I found it. My purpose is to be the best big sister I can be, to make him feel included, to encourage him to dream big, to make sure he has a magical childhood in which nothing is impossible and most importantly to be his best friend, so that he always has someone who understands.

Before his transplant at the age of two (six days before his third birthday), he couldn’t walk, talk or even eat and my dad became his full-time caregiver. It wasn’t easy seeing him unable to do the things that children at his age should be able to and my parents experienced a lot of additional worry and responsibility. If you are a parent yourself reading this blog, I am sure you would agree that as a parent, you would go to any length to do what is best for your child and protect them from all the cruel things in this world. However, for my parents this wasn’t always possible, and I can imagine that must have been incredibly hard.

Personally, as a sibling, I often felt like I wasn’t as important as my brother as a result of my parents having to spend a lot of time with him in hospital, at different appointments and at home. Don’t get me wrong, my parents are simply amazing and I couldn’t be any more grateful for them and everything they have done for us both, but I often felt isolated and kept many worries to myself as they didn’t seem big in comparison to what my parents were dealing with in relation to my brother. I was only six years old at the time and became good at hiding my emotions quite quickly. I also experienced the feeling of guilt – why do I get to be healthy and my brother doesn’t? Why does he have to be in hospital when I get to stay at home and go to school?

Throughout the years, as I have got older and began to see the bigger picture, I have realised that my brother’s condition is not my fault, it’s nobody’s fault, and that my parents love us both equally and that I am not any less important. If I had been in my brother’s position, my parents would have done the same for me. I’ve also come to understand that what I was feeling at the time was completely normal for someone in my situation and that there are so many other siblings feeling the same way. So, if you reading this blog are a sibling of a transplant recipient or your sibling is on the transplant waiting list, remember that you are not alone.

Following being listed on the organ transplant waiting list, my brother waited a total of three weeks until the call came. For some, the wait for this life-saving call doesn’t come for several weeks, months, years and, heartbreakingly, for some the wait turns too long. This is part of the reason why I am here writing this blog today. Three people are still dying every single day due to the shortage of donors and this should not be the case. Kindness, empathy and a short conversation with your loved ones are the keys to saving lives. Every one of us has the chance to save lives after we have passed away, how amazing is that?

Kristof’s operation lasted over six hours and within days of receiving his new liver, we began to see small improvements. His eyes were no longer jaundiced, and he was able to start eating. A few weeks passed, and he was discharged from hospital.

Almost a decade later, I am here writing this blog. Kristof is soon to be a teenager (where has the time gone!), enjoying playing sport (football and table tennis in particular), spending time with friends and he has just started his second year in secondary school. He is the kindest, most downright hilarious and caring young man you could ever meet. I couldn’t be prouder of how far he has come since his transplant and his journey really just comes to show how much of a difference a new organ can make to someone, as well as their loved ones.

Kristof is my whole world and more. I could never imagine life without him. I can’t thank his donor and donor family enough for the second chance they have given him and our family by saying yes to organ donation. There’s no greater gift than the gift of life and we have been blessed to receive it.

I would also like to take this opportunity to share with you a petition I have started recently in the hope to make basic education about organ donation a compulsory part of the secondary school curriculum here in the UK. I believe that education is the key to change, and by educating young people we can save so many more lives and get the nation talking about their wishes. Education in schools is also one of the aims of Lucia’s campaign, Live Loudly Donate Proudly. The petition is on change.org,  please take a look and share the message.

As I come to the end of writing this blog, I would like to say a massive thank you to Lucia’s family for this opportunity to share my perspective of organ donation during organ donation week; what a wonderful idea to help raise awareness and continue the incredible project which Lucia started. I would also like to thank you for taking the time to read this blog. Please, have the organ donation conversation with your loved ones, because by saying yes to organ donation you’re not only saving lives, but you’re also giving someone’s mum, dad, daughter, son, brother, sister or friend more precious time with their loved one and a second chance to make memories and enjoy the gift of life.

Fanni Doroti Polgar

The care of our minds and bodies needs a lot of trust as we hand ourselves over to the medical professionals.  We trust our doctors and their diagnoses, then the referrals, the specialists, consultants. Some move on to surgeons – and anaesthetists, scrub nurses, runners, theatre technicians, and perfusionists. On the other side of the operating theatre is a place of intensive care. Whatever the name it goes by, here is care, therapy, that is just that, intensive, every minute of every hour of every day. It may be a few days or much longer.  There is skill and art in paying attention, focusing compassion primarily on the patient, and also on family, friends.   The nurses may come from many countries, often with English as a second language, but the language they must all learn, or perfect, is, to borrow the title of a beautiful book by former nurse Christie Watson, “the language of kindness”.  Today’s insight is from a member of a team who speak that language with excellence.

 

I remember witnessing my first transplant, peering from a stool at the edge of the transplant theatre. I watched in wonder as the skilled surgeons carefully, painstakingly removed the old damaged organ from the patient asleep on the table. They connected new arteries to old and this new liver, pale initially, blushed pink and healthy as their blood flowed through this new part of them. Read More »