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 »

And the surgeon said, “I’m just a plumber: I just cut and join.”  Could that qualify as one of the greatest understatements of all time?  It is characteristic of this good man, Khalid Sharif, that, when invited to contribute a blog on organ donation from a surgeon’s perspective, he chose to write, not about the professional skills and details of his surgical, life-saving procedures, but about his patient, and the special relationships he and his team contribute to the complexities of the healing process.  Skill there is in abundance.  Hours committed above and beyond any ordinary working day.  Or night. And after the most concentrated and demanding of operations, time given to the family to bring a personal report.  Beyond the time spent in the company of his patients and their families, there are many other professional responsibilities and commitments outside and far from the wards of Birmingham Children’s Hospital.  But always a readiness to be called back to the priority time in the theatre, holding the lives of precious children in his hands…

 

(L to R: Back row: Mr Khalid Sharif, Consultant Hepatobiliary and Transplant Surgeon, Lucia Quinney Mee BEM, Philippa Lewis, Transitional Youth Worker, Front row: Dr Girish Gupte , Consultant Paediatric Hepatologist, Dr Jacqueline Blyth, Consultant Clinical Psychologist)

Way back in 2007, an 8-year-old little girl was transferred to our unit for the management of her sudden onset of Liver Disease. Over the following years it was our privilege to get to know this little girl and watch her grow up to be an awe-inspiring young lady.

It became evident very quickly, during her investigations and workup, that she would require a new liver.  I still remember trying to explain the surgical management plan for her disease; she was quite sick but even at that point it was clear to see that this little girl had spirit and determination. She wanted to know the details and this never changed throughout the time we knew Lucia.  She was in urgent need of a transplant but it was also becoming evident her disease, unfortunately, had the risk of recurrence in any new liver graft with the possibility of needing more than one transplant.  She was shy when asking questions and at times she looked at me with her deeply jaundiced eyes.  Her answers to my queries were always a “Mm hmm”. I had to clarify if “Mm hmm” was “Yes” or “Mm hmm” was  “No”.  This style and our relationship never changed for the rest of her life.  I gather whenever this was repeated it brought a smile or more from Lucia.

A few days after listing for liver transplant she received the precious gift of a liver graft.  The transplant procedure went well. However, her road to recovery had a few bumps and twists. She always showed a positive attitude and complied with the instructions including doing physiotherapy and taking her medicines, learning quickly alongside her family about life after transplant. She made a good recovery and was soon home to her beloved beach and home. Her energy levels returned, and she gathered energy, giving energy to those around her to.

Lucia was lucky to have beside her during her transplant journey her parents and sister, always in the “cheer-leading position”, encouraging and supportive. They never complained, always had a positive attitude and at times they supported the whole Multi-disciplinary team.

Unfortunately, the disease recurred in her graft after a short while and she was again in the need of re-transplant.  Despite knowing the surgical challenge of re-transplant, including the risk of losing her, the team went ahead with re-transplantation.

In 2015 we faced further challenges and Lucia required a 3^rd lifesaving transplant. By this point she was a young lady with opinions and definite views about her treatment options. After much discussion, information sharing, debates and chat Lucia was placed on the transplant list once more. Again her parents and sister were by her side, discussing the pros and cons of living related transplant. Lucia was making her views known and ensuring she was listened to. We learned a lot as a team from just listening to this now young lady.

In the eleven years we looked after Lucia she had three transplants, each with its own surgical challenges.

Lucia, however, made sure that every moment counted when she was well. She enjoyed singing and dancing on late nights out and sleep-overs with her friends.  Taking part each summer in the UK Transplant Games first for the Children’s Hospital and then for the Northern Ireland team. She was also a member of the GB & NI swimming team at the World Transplant Games.

Lucia was passionate about raising awareness around organ donation. As a team we were so proud when she was awarded the British Empire Medal for raising awareness about organ donation.

In 2018, Birmingham hosted the UK Transplant Games and Lucia was one of the children’s hospital team managers, helping to organise the team, making sure competitors were in the right place at the right time and ensure the event ran smoothly.  Lucia supported and encouraged the children to participate, making sure that a lot of fun was had along the way.  Once again Birmingham Children’s Hospital team won many medals and the trophy for best children’s team and best liver team. I went along to the event; she was like a butterfly, always active and inspiring with a smile on her face.

This was all possible due to the transplants she received, and she was profoundly grateful to her donors and their families.  She always remembered to thank and credit them for her achievements. She encouraged everyone to “have the conversation”, she promoted organ donation at every opportunity.

I don’t remember how I started calling her “Quinney Mee” after her first transplant, but she always used to reply to me with a smile when I called her with this name, even when she was really sick. She always wanted to take responsibility for her care and treatment plan, hence wanted to know all the details.

When she reached 18, we had to make the hard decision of transferring her care to the adult team as she could no longer be categorised as a child even though, for us, she was still “Quinney Mee”. She visited the hospital to say good-bye and wrote personalised letters to every team who was involved in the care.  She regarded the Children’s Hospital as her second home and will always be part of our “BCH family”.

It was the generous gift of organs which allowed us as a team to witness this little girl grown up and become a young lady, to have a life full of activities, lots of friends and make a huge contribution and difference to society on her incredible life journey.

More importantly it gave Lucia and her family over a decade of memories of family time which they enjoyed together.

I will always remember my “Quinney Mee”.

Khalid Sharif

 

Every year, at the Opening Ceremony of the Transplant Games, the athletes from competing hospital teams across the UK are applauded into the venue with joyful, wide-eyed anticipation and delight.  Over 1,000 athletes, of all ages, and another 1,700 or more spectators.  Each team has their own loyal supporters, many are family members who have supported their athletes through much harder times.  The last people to enter the venue are the donor families.  Every year, however many times we’ve done it before, as the entire crowd rises to its feet with the loudest and longest applause of respect, honour and gratitude, there are tears.  These families, and many like them, are the reason our athletes are able to be here.  And the personal price paid so this moment can happen is beyond measure.   So, for your story, and on behalf of all those who stand in honour of donors and donor families in the Transplant Games stadiums, who clap until our hands throb red, and the many, many more whose lives are changed and immeasurably blessed by these bravest of decisions, thank you, Sharon and Nigel, and all those like you who give your greatest gifts.  Be proud… Read More »

Organ donation laws vary across different countries in the United Kingdom. Wales was the first to move to an “opt out” system where, unless you have registered a different decision you will be considered to have no objection to organ donation.  England adopted the same system in May 2020 and Scotland intends the same in March 2021.  Northern Ireland is expected to begin a consultation process on the “opt out” system this autumn.  Whatever system is in place where you live, and whatever your decision, for donation to go ahead it would be discussed with your family and their support would be needed.  The aim of this week, and of these blogs, is to encourage those conversations between family and friends in easier moments so that, should the occasion arise, these hard decisions can be made with more strength, confidence and even pride in helping another person. There will always be kindness, as Nisa explains… Read More »

NHS Blood and Transplant manages the NHS Organ Donor Register and National Transplant Register, “…which lets us fairly match donors to people who are waiting for a transplant. Thanks to our amazing donors, we were able to facilitate nearly 4,000 transplants in 2019/20. This is fantastic, but there is still a lot more to do. There are currently around 6,000 people on the UK Transplant Waiting List. Last year over 350 people died while waiting for a transplant.”

We are grateful to Aaron for this insight into his own time of waiting…

My experience on the Transplant List

In Spring 2015 I had a third infection in my liver caused by Primary Sclerosing Cholangitis (PSC). PSC is a chronic condition that damages the bile ducts and liver. I had suffered and known about the condition for years and I was well aware that this was the trigger for a liver transplant assessment. I was 23 at the time. Read More »

Organ Donation Week 2020 starts today, Monday 7th September.  As an introduction to it all, and what to expect from Live Loudly Donate Proudly this week, we can’t do better than Lucia’s own words from a few years ago.  Here goes again..

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