Committee members Donald Cairnduff, Jennifer Cairnduff and Rachel Quinney-Mee attended The Children’s Liver Disease Foundation’s Conference at Chesford Grange in Warwickshire on Saturday 24^th September. Once again it was a memorable day, with the insights gained from a range of excellent presentations complemented by inspiring stories of courage told informally between sessions.

As ever the most compelling voices were the voices of the young people themselves. A young man told how he had reacted to sustained bullying for being a transplant recipient by trying too hard to be the person he thought his peers expected him to be. After a long and difficult time, football, fishing and the love and support of his family allowed him to find happiness in simply being himself. A teenage girl, asked about when you should let others know that you are a transplant recipient, advised: Wait. Slip it in naturally to conversation. You don’t want to be defined by your condition. She also had advice for parents of hospitalised children: We can sense if parents are stressed.  If you don’t look after yourself, our recovery suffers.  Another teenage girl, asked how parents should talk to transplanted children about medication and lifestyle, advised: Don’t shout. If I am told I can’t do something, I will immediately want to do it.

We are grateful to CLDF for their invitation and for making us so welcome on the day.

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 Lucia Quinney-Mee

Lucia at her gala dinner in Tullyglass.

Lucia Qunney-Mee suffered auto-immune hepatitis as a child and received a liver transplant in Birmingham Children’s Hospital at the age of 8. A year later, chronic rejection necessitated a second transplant. For the next six years Lucia’s life veered between rich, active experience and periods when hospital became like a second home. In January 2015 sepsis from a kidney infection led to ten days in intensive care, at the end of which her liver was under so much stress that she was re-listed.

Lucia was now 16 and a transplant could not go ahead without her consent. It was a very tough decision because she knew that recovery would be much harder, physically and mentally, than before. She is grateful that her family and medical staff in Birmingham gave her time and space to think it through. She eventually signed consent forms in April and received her third liver on 9^th September 2015.

In the year that followed, Lucia has achieved excellent GCSE grades, set up a social media campaign for the promotion of organ donation called Live Loudly, Donate Proudly which has reached hundreds of people, been interviewed twice on The Nolan Show, spoken about the life-enhancing impact of organ donation to politicians at Stormont, won seven gold medals in the British Transplant Games in Liverpool and been selected for the World Transplant Games in Malaga in 2017. Almost a year to the day since her transplant, Lucia’s family hosted a gala dinner in the Tullyglass Hotel in Ballymena at which she made a passionate and compelling case for registering as a donor to a packed room. Every bit as satisfying as any of these achievements are the things Lucia’s donor has given her that can’t be listed or measured – the chance, in her words, of laughter, joy, tears, excitement and every other emotion that life has to offer.

She says: It has been my goal, ever since I signed those consent forms last year, that I would get to Malaga and that I would be the fittest, strongest and happiest person I can be. My donor has given me the ability to work my ass off for that goal. I have the chance and the hope that I will get there. That is what you could give to someone. As well as so much more. Please talk to your family about yours and their wishes. Make it a positive conversation, and help those who are uncomfortable see how important it is to discuss. We can make organ donation the norm – not the exception. An ordinary conversation which leads to an extraordinary gift.

Please join the organ donor register, tell your family and friends you have done so and offer the gift of life to someone like Lucia.  It is a gift that will be cherished.

Online: organdonation.nhs.uk                    By phone 0300 123 23 23

Rachel Chambers

Rachel and David on their wedding day

Rachel Chambers was a perfectly normal, healthy schoolgirl until she turned yellow overnight. The liver disease that had attacked her out of nowhere floored her for a couple of months. After a partial recovery she was knocked flat a second time for another two months. Once again she seemed to be recovering but the next onset was so severe that she was placed on the emergency transplant list. Rachel received a new liver in Birmingham Children’s Hospital in January 2002 at the age of 8.

The months prior to Rachel’s transplant were a difficult and distressing time. During her long bouts of illness she became too weak to go to school and was fit for little more than watching television at home. When she seemed to be getting better, the next bout of illness was all the more difficult to cope with. Medical staff were very kind and supportive in the build up to the transplant, using dolls and pictures in books to explain the surgical processes in terms she understood.

Rachel was in Intensive Care for 2 days and then moved to a high dependency ward, where her energy levels rocketed. She was ready for home after a week and rather annoyed that an infection kept her in hospital for a further week. She returned to school in March and her only medical setback since was a bout of rejection in 2009 that was quickly controlled by medication. She finished her studies at Kilkeel High School, completed a degree in ICT and Computing at Queen’s and works for B/E Aerospace, with whom she spent her undergraduate placement year. She has represented Team GB/NI in a range of sports – 10-pin bowling, badminton, archery, running – at three world games in Thailand, Australia and South Africa. Rachel and David married in 2014.

She says: I think of my donor all the time. Without the gift of a new liver I wouldn’t be here. I wouldn’t have survived a year as a child let alone lived such a full life.   

Please join the organ donor register, tell your family and friends you have done so and offer the gift of life to someone like Rachel.  It is a gift that will be cherished.

Online: organdonation.nhs.uk                    By phone 0300 123 23 23

Gordon Cave

 Gordon and Anne Cave

The chronic liver disease that Gordon Cave from Bangor had suffered since 1989 was caused by an unrecognised virus. Despite the best efforts of doctors at the RVH, his liver slowly degenerated. He was assessed for a transplant in March 1997 and transplanted in October 1997. By this time the degeneration of his liver was so advanced that he was weeks away from being too ill to receive a transplant at all.

Before his transplant Gordon worked for the Northern Ireland Civil Service but by 1996 illness had ended his career. During the period between assessment and transplant in 1997 he was jaundiced and virtually bedridden, experiencing itching and chronic nausea. On the flight to London before his transplant his mind oscillated between fear, a steely determination to come through the operation and get his life back and a haunting vision of a family sitting beside a machine in some A&E ward, agreeing in their grief to allow a loved one’s organs to be donated.

The operation was successful and three weeks later Gordon returned home. He has since spent countless happy hours in his caravan in Castlearchdale – relaxing with his wife Anne, boating, fishing and watching his grandchildren Harvey (now 11) and Melissa (now 9) growing up. From the beginning he was determined to do all in his power to help others who were experiencing the illness that he had come through and has been a committee member of the RVH Liver Support Group almost from its inception until now. Chairman from 2003 until 2009, he was awarded an MBE for his services to charity in 2009.

Gordon says: I have been blessed with an additional 19 years of life and am deeply grateful. On good days, particularly when I am surrounded by my own family, my donor family comes vividly to mind. It is impossible to say thank you.

Please join the organ donor register, tell your family and friends you have done so and offer the gift of life to someone like Gordon.

 It is a gift that will be cherished.

Online: organdonation.nhs.uk                    By phone 0300 123 23 23

 Wendy Howe

Wendy (r) with fellow transplant athletes Sharon Millen and Philip Cairnduff on her return to Belfast from the 2016 British Transplant Games.

On 28^th December 2012 Wendy Howe spent her birthday receiving a liver and kidney transplant at Queen Elizabeth’s Hospital, Birmingham. Very ill since 1998 with a hereditary polycystic kidney disease that compromised her liver, she had been on the transplant waiting list for 18 months.  Post-transplant recovery was tough but she was helped through it by the support of her three children, the expertise of medical staff and her dream of returning to Groomsport before the last lapwings left at the end of March. When she got home they were waiting for her.

Before her transplant Wendy’s liver had become so enlarged that she could only sleep propped up by a pillow. Exercise made her breathless, she felt full very quickly at mealtimes and became upset when people assumed from her appearance that she was pregnant. These experiences were consistent over more than 13 years of illness but became steadily more unpleasant as time went on. Her youngest daughter graduated in 2012 and Wendy was too ill to find the joy in the experience that she desperately wanted to. Just over a year later, on October 8^th 2014, her first grandchild Ryan was born and this time, well restored to health, her joy was complete.

After her transplant Wendy initially built up physical stamina by taking walks in the country. In the longer term her recovery was helped significantly by the professional expertise of medical staff in the Royal Victoria Hospital and the Belfast City Hospital, and by the friendship of people in local charities Transplant Sport Northern Ireland and the RVH Liver Support Group. She sees the transplant community in Northern Ireland as a family to which she is very proud to belong. She competes regularly in the British Transplant Games, works voluntarily in an Advice centre and sketches wildlife. Recently she swam in the sea for the first time in 25 years and now does so 2 or 3 times a week.

The sense of being blessed by a donor’s gift is a common feeling amongst transplant recipients but Wendy feels doubly blessed as the recipient of two organs from the same donor. She says: When I think of my donor and their family I am overwhelmed by how generous people can be. The kindness of strangers to me has inspired me to be more sensitive to other’s needs, particularly in my voluntary work. The gift of a new life certainly leads to greater empathy with people in difficult circumstances.

Please join the organ donor register, tell your family and friends you have done so and offer the gift of life to someone like Wendy.

It is a gift that will be cherished.

 Online: organdonation.nhs.uk                    By phone 0300 123 23 23

GORDON KIRK

Gordon and Lynn Kirk

Gordon Kirk had ascites for years and due to what his wife Lynn calls the usual man thing he delayed seeing a doctor.  Neither a heavy drinker nor a smoker, he never thought for a moment that his ascites might be liver-related.  Eventually blood tests revealed a liver abnormality; then scans revealed a clot in the vena cava restricting blood flow to the liver; and after a referral to the Royal Victoria Hospital in 2014, a previously undetected clot in the portal vein was discovered.  By this time cirrhosis had set in and Gordon needed a transplant urgently.

 Before the clot in his portal vein was discovered, Gordon had been an outpatient in a local hospital for 8 years and although his condition was deemed stable, he was jaundiced and had very poor sleep patterns.  After cirrhosis set in he suffered encephalopathy so alarming that he was tested for a stroke.  His transplant finally went ahead in November 2015 after three false starts within nine months – he and Lynn had been called to King’s College Hospital in London and told, for different reasons each time, that the transplant could not go ahead.

 Asked what is different for Gordon after his transplant, Lynn’s answer is simple – everything.  Gordon is alert, active and happy.  Lynn does not have to speak for him as she did in the days when he was too weak and lethargic to speak for himself.  Both she and their daughter Andrea are still getting used to Gordon being fully involved in their life as a family, still not completely aware to the sheer scale of his recovery.  Gordon enjoys an active lifestyle, with a renewed interest in D.I.Y. and he has returned to his boating activities and to driving.

Gordon says: I am immensely grateful to the teams at RVH and Kings College Hospital for their patience and care.  Of course I will always remain deeply grateful to the anonymous donor and his family for making my recovery possible.  At ten months post-transplant I now have renewed optimism and look forward to tackling the future with vigour and optimism.

Please join the organ donor register, tell your family and friends you have done so and offer the gift of life to someone like Gordon.

It is a gift that will be cherished.   

Philip Cairnduff

In August 2004 Philip Cairnduff returned to Belfast from a Habitat for Humanity building project in Africa very sick and very jaundiced. 5 days later, after being transferred to Kings College Hospital in London, he suffered acute liver failure.  Doctors gave him eight hours to live unless a suitable organ became available for transplant.  Fortunately one did.  He received the transplant that saved his life less than a week after his 18^th birthday.

Before his transplant Philip was a Sixth Form student at Belfast Inst who had successfully completed AS examinations and was looking forward to starting his A2 year.  Outside school he was heavily involved in the life and work of his church.  His sporting life amounted to little more than cross country runs at school on games afternoons.

After his transplant Philip became an Advanced Motorist, completed a French and Spanish degree at Coleraine University (he lived abroad in Belgium and Spain during his 3^rd year), competed regularly in the British Transplant Games, represented Team GB at the World Games in Argentina in 2015 and became the first liver recipient to complete the Belfast Marathon in May 2016.  He ran the marathon in memory of his donor who would have been 60 this year had she lived.

He says: Our lives are shaped by the people we meet but among the most significant people in my life is a family I’ve never met.  Whoever they are and wherever they are, I live each day in gratitude to them and hope that they would be proud of all my achievements.

Please join the organ donor register, tell your family and friends and offer the gift of life to someone like Philip.

It is a gift that will be cherished.

Organ Donation week runs from September 5^th until September 11^th.

In recognition of this the RVH Liver Support group will be posting Before and After stories on its website during the week.  Each day a new story will tell of a liver recipient’s life transformed by the generosity of strangers.  The stories will illustrate the gift of life gratefully received and put to very good use by those fortunate enough to receive it.

You may well be familiar with some of the stories.  Please read and reflect on them anyway and encourage your friends, family and colleagues to read them as well.  Let’s hope that the power of these stories will help add more names to the donor register.

You will find them posted each day in the Stories section of the site.