The Nicks family from Whitecross present a cheque to Kay Duffy founder of
the RVH Liver Support Group for £1460.96. This money raised was in lieu of
presents for Orla’s 40th birthday. Their daughter Erin had a liver
transplant five years ago
Kay Duffy receives the cheque on behalf of the support group
Life saving family chat
Tell Your Loved Ones – this Thursday
Thursday 11th December is Tell Your Loved One Day. This day-long campaign has the backing of the First and Deputy First Ministers and simply involves as many people as possible across Northern Ireland sitting down and discussing openly with their families whether or not they wish to be organ donors.
84% of people in Northern Ireland support the idea of organ donation yet the latest statistics reveal that 38% of families refuse to give consent to the donation of their loved one’s organs when faced with this choice.
And without family consent donation will not happen, regardless of whether the deceased was on the register or not.
The most common reason for families withholding consent is because they had never been told that their loved one wished to be a donor. If donation rates are to increase, talk about an individual’s willingness to donate must be more widespread and more open.
Please support Tell Your Loved One Day in your own homes. And please encourage friends and wider family to have the same talk at some stage of the day. Currently 15 people per year from Northern Ireland die on the waiting list. Open dialogue will lead to more awareness of the life saving power of donation – one deceased person can save many lives – and greater awareness will lead to fewer people dying.
This Thursday:
RAISING AWARENESS OF LIVER TRANSPLANTATION – at the heart of Government
The All Party Group on Organ Donation at Stormont is a small body of MLAs meeing roughly four times a year so that they can stay informed on all aspects of organ donation as it affects people in Northern Ireland.
It is chaired by Mrs. Jo-Anne Dobson (MLA UUP). Mrs. Dobson has a keen personal interest in the issue as her son is a kidney recipient. She is currently drafting a Private Members’ Bill to change the law in Northern Ireland to a ‘soft’ opt-out system.
When the Group met on Monday 24th November, the focus was on liver donation. Presentations were made by myself, as chair of the RVH Liver Support Group, by consultant Dr. Neil McDougall and by Gareth Hunter – three times a liver recipient within 6 weeks last summer.
I spoke of my experience as a carer for over 10 years, of the contact the charity has with patients who have to travel to England for surgery and with their loved ones and of the overwhelming support for an opt-out system from our survey of members in 2011.
Dr. McDougall outlined the work done in the RVH to prepare patients for transplant surgery and to aid their recovery. He spoke of roughly 18 transplants per year for Northern Ireland patients and cited 230 recipients currently alive and well. Outcomes were very encouraging, with one the one year survival rate standing at 91% and the five year rate standing at 80%. Northern Ireland was also one of the top regions in the U.K. for liver donations; we probably gave more than we received. The challenges were growing demand, a lack of suitable organs and how to cope with clinics getting very full as a result of increasingly successful referrals.
Gareth then talked about his long struggle with PSC that culminated in 2 unsuccessful transplants and one finally successful transplant in the summer of 2014. His story was accompanied by slides, ranging from a picture of him playing golf as a 7 year old to one of him breaking his post-transplant fast with a well-earned yoghurt. It was told with humour, as when he deplored how the timing of his surgery had prevented him watching the Open Golf Championship at Hoylake; with searing honesty, as when he outlined the impact on his life of encephalopathy; and never at any stage with even a shred of self-pity – in fact he stressed that some people he met in King’s had endured a far rougher time than he had. The end of his presentation was received with a sincere and spontaneous round of applause.
It was a very worthwhile and satisfying morning. Thanks to Mrs. Dobson for choosing liver donation as the theme for this meeting and for allowing the three of us to speak.
Donald Cairnduff
Gareth Hunter and Donald Cairnduff withJoanne Dobson MLA and Dr Neil McDougall
Seated (l-r): Donald Cairnduff; Dr. Neil McDougall; Gareth Hunter
Standing (l-r): Tom Elliott (UUP); Pat Ramsey (SDLP); Jo-Anne Dobson (UUP); Sammy Douglas (DUP); Bernadette Maginnis (British Medical Association NI); Jayne Murray (British Heart Foundation NI); John Brown (NI Kidney Research)
Unidentified spooky fundraisers at Braeside Bar
Members of the Tullylagan Vintage Owners Association and friends met for a Hallowe’en party at the Braeside Inn in Orritor, near Cookstown, on Saturday 25th October.
As it was Hallowe’en, many of them came dressed as ghosts, ghouls and monsters – some even scarier than the couple pictured here!
RVH Liver Support Group is the Tullylagan Vintage Owners chosen charity of the year. This was the first of several fundraising events they will be holding between now and the summer of 2015.
With an auction and a ballot, some £1, 500 was raised on the night.
Thanks go to Robert Beggs, Gary Wilson and other members of the Association who worked so hard to set things up. We look forward to regular contact with Tullylagan during the coming year.
Every year the RVH Liver Support Group helps the Northern Ireland Transplant Association promote the Organ Donor Register at University Freshers’ Fairs.
This year was no exception. Committee members Jennifer and Donald Cairnduff helped man the NITA stall at the University of Ulster at Jordanstown on Thursday 25th October. During the day a steady stream of students joined the register, some went away to consider it and others spoke openly and honestly about their reasons for not wanting to join the register.
Pictured are several people who have just signed on to the register – three UUJ students (l-r Amy O’Connor; Niamh McShane; Emma Fallon) and Ciara Lavery. Ciara is keenly aware of how organ donation can be a gift of new and transformed life; her cousin Sean Lavery is recovering well from a liver transplant received earlier this year and planning major fundraising for the RVH Liver Support Group in February 2015.
Jennifer was attending her first Freshers’ Fair. Afterwards she summed up her impressions of the day: ‘The students were very open to talking to us. It was very encouraging to hear that many had already signed on when applying for a driving licence and discussed their wishes with their families. It was also good to have a ready supply of ‘freebies’ to help lure students to our stand!’
A tiring but very rewarding day. ;
DO I BELIEVE IN MIRACLES?
(Cherril Blair from Ballymoney recalls the joy piecing her life back together again, following her transplant in the Spring)
May I begin by expressing my gratitude to everyone in the three hospitals where I was treated – the Royal, where I was nursed, informed and prepared for what lay ahead by a tremendous team; King’s College Hospital where my surgery was carried out and the Causeway in Coleraine where my visits became longer and more frequent from 2011 onwards. I have met so many wonderful people but each seemed to know everything about me – even my love of porridge.
I was placed on the transplant list in March 2013 and gritted my teeth for a long wait – perhaps two years or more. Despite increasingly frequent bouts of encephalopathy and ascites, I thought I was doing O.K., until after one year I deteriorated suddenly and was admitted to the Royal, feeling pretty low and with failing recognition of my situation. Four weeks later I was transferred to King’s where I received my liver transplant in early March.
Coming round, I knew I had a liver for I could see John clearly for the first time in weeks- and he was grinning. So was I. From that morning I gave thanks to the family who had thought of others in their time of grief and that has been my waking thought every morning since. Despite the drains and tubes, I was in a state of euphoria. There were blips but I could not take them under my notice. When I recall my response to enquiries from medical staff, family and friends, I can only remember how my life had been saved and how dismissive I felt of their problems. I was so well supported I flew through the next weeks and was soon back in the Royal for recovery.
As I lay in a quiet room, gathering strength, I had the first hints of further incredible experiences ahead. Memories of my former life washed over me like a tide. I would wake up chanting the phone numbers of friends – in particular my friend from school days whom I had not been able to visit for four years and whom I had not been able to phone for at least two. John took down the numbers and soon I was in contact with Olive. Beth, my support for three years, was able to visit. From cousin Doreen I caught up on family news. As soon as I could operate my mobile, I set about phoning friends. I could not stop talking. My grown sons, who had visited me constantly, chortled as I began to take an active motherly interest in their lives again. When I caught myself commenting on their hairstyles – they are in their mid-thirties – I stopped and bit my tongue.
The tide became a tidal wave as more questions occurred. I had to be reminded of friends who had passed away. I wrote to bereaved families whom I had been unable to visit. Thankfully John made sure the letters were suitable. I was reminded of family events, the birth of children, the lives of nieces and nephews, my brother and sister and their families. My most welcome update was on the development of my four lovely grandchildren and the details of my two year old youngest grandson, with whom I could not wait to engage. Hearing about the grandchildren was the pleasure of my life. Would they remember me after three months? They did. My two lovely daughters-in-law were constantly in touch. They had coped with young families alone to allow my sons to visit me. I began to appreciate how much my illness had affected my loved ones and how much I had to catch up on.
Many of the medical staff remarked on my personality change. ‘But this is me,’ I kept saying. I was dependent on their approval and kept checking that I was doing the right thing for my liver. Having been advised to feed my liver and not eat the small amounts I allowed myself as a person with diabetes, I gloried in steam pudding and custard. Thank-you, Pat.
I was discharged home and the tidal wave became as tsunami as I took up the reins of my life again. I visited my mother frequently, catching up on her life as well. After three months’ isolation, my discharge led to a stream of visitors. I was in heaven. In three months I could drive and John and I could have some personal time. We became used to doing everything together, even my visits to the hairdressers.
With plenty of time to think, I appreciate every day the expertise and kindness which have saved my life and developed me as a person. Do I believe in miracles? Yes.
Fantastic fundraiser in Roadhouse Bar in memory of Anna Sheerin
Cheque presentation. L to R Rita Carney, Vinny, Tommy Sheerin, Arlene McManus and Kay Duffy
Tommy Sheerin and his band of volunteer helpers raised the massive toatal of £3100 at a function in the Roadhose Bar on 30 August in memory of Anna Sheerin. It was very well organised and even the organisers themselves were overwhelmed by the generous response from the local community who supported them so well.
The cheque was handed over on Saturday 6 September to Kay Duffy from our group. Tommy Shherin was so complimentary of the support he received from our group and Kay in particular. The photo shows the cheque presentation.
Sheerin family raise funds in memory of Anna
Seamus Cunningham with, from left, Danny Sheerin, Tommy Sheerin, Louise Sheerin and Amy Green.
There was a fantastic fundraiser for our group in the Road House bar in Enniskillen on Saturday 30 August in memory of Anna Sheerin. The event was organised by the Sheerin family and their friends in the local area. It was particularly well attended and soon there will be a presentation of the proceeds featured on this site. I had the pleasure of calling with the group before proceedings really got going and spoke to family members and Arlene McManus who was one of the dynamic and enthusiastic organisers.
Transplant GAMES 2014
The British Transplant Games in Bolton from 7th -10th August brought plenty of success for liver recipients from Northern Ireland.
Lucia Quinney-Mee’s swimming medals contributed significantly to Birmingham Children’s Hospital winning the children’s team trophy
. 
The Belfast Team won the adult team trophy with the help of Catherine Annesley, Seamus Cunningham, Wendy Howe and Sharon Millen.
Philip Cairnduff represented King’s College Hospital and chipped in with 3 medals towards their fine total of 45. While all competed keenly, they contributed to the event in far more important ways than simply by winning medals. Talking to other transplant recipients, donor families, charity representatives and medical professionals gave a sense of perspective on their own experience of illness and sometimes bumpy recovery. And by competing at all, they and hundreds of others from under 5’s to over 70’s showed the people of Bolton, as well as T.V. and radio audiences nationwide, the amazing way in which transplants transform lives.
Most years see the numbers on the Organ Donor Register where the games take place increase dramatically. Let’s hope for the biggest increase yet amongst the people of Bolton and Greater Manchester.
Just over a year after The Children’s Liver Disease Foundation made their first visit to Belfast, they are on their way back.
Last September a record number of children and family members went 10-pin bowling at the Odyssey Arena. This year CLDF have booked Streetwise Circus to present a programme of circus skills. It should be a very lively and entertaining few hours for everyone who comes along.
This all takes place on Saturday 1st November – from 11. 30 a.m. to 2. 30 p.m. – at the Morton Community Centre in Belfast (off the Lisburn Road)
As last year, CLDF staff will be available to chat to parents and children about how they are coping.
RVH LSG are delighted to be helping with the preparation and delivery of the event. More details will be posted as the weeks go by.
In the meantime – if a child in your family has been in any way affected by liver disease, please put the date in your diary.
