Service of Remembrance and Thanksgiving supplement Pages 27-38 t’s been a very hectic time since I branch actively recruiting new took up my position with the Irish members and assisting with planning Editorial... Kidney Association. As some of for the development of a second IKA Iyou will know, three days after I Support Centre. The Branches are started, my father became terminally key to our success and we will be ill and I was out of the office as we discussing this in more detail at a cared for him at home until he died. future online event. Our Chairman, Colin Mackenzie, You can read inside, the welcome covered for me and the Board news about the completed generously allowed me the time to refurbishment of the Renal Unit at be with him. The numerous kind Waterford University Hospital, comments, emails, notes, letters, and providing a magnificent training Mass cards made it clear to me that I centre for dialysis patients (page 19), had joined a very special and kind and also about the opening of a new organisation. As Colin stated, “When state-of-the-art Renal Unit at Tallaght you have experienced grief, you University Hospital (page 14-15). know how much kindness means.” Previously, at this time of year, we So, thank you all, from my family and would announce the dates for the me. It meant so much to us. It has forthcoming Organ Donor Awareness been a very real comfort to return to Week with confidence. However, this lovely community and to be with with the very real prospect of people who are so kind and COVID-19 persisting well into 2021, supportive. a very provisional plan for the We had a terrific response to the campaign, most probably involving a TV broadcast of our Service of move away from the traditional Remembrance and Thanksgiving. format, is for it to be held from Over 64,000 people watched the Saturday 27th March – Saturday 3rd programme with thousands more April, 2021. The safety of our staff, tuning in later on RTE Player, volunteers and patients will be at the including diaspora from 24 countries forefront of our considerations when around the world. There is a pull-out making decisions on how to proceed. supplement on this special event on We hope to have a clearer picture on pages 27-38. our direction by the beginning of the I have been meeting many New Year, 2021, and we can then branches virtually, listening and trying notify our members on social media to understand your concerns. I have and through our branch network. been impressed by the resilience, We have been in touch with the ability and strength of Branch National Renal Office (NRO) and have Committees, from the Sligo branch, been advocating on behalf of people which has secured a commitment on home dialysis regarding deliveries. from the Minister of Health, Stephen (See 8-9 for report) Donnelly, to plan for the upgrade of We have made a submission to Contents... the overcrowded and not fit for the Joint Committee on Disability purpose Sligo unit, to the Cork Matters on the lived experience of

FRONT COVER 2 EDITORIAL 4 A CHRISTMAS MESSAGE FROM and THE NATIONAL CHAIRMAN Sallyanne Clarke, 5 CHRISTMAS MESSAGE FROM US parents of a 6 FAMILIES URGED TO DISCUSS THE deceased organ ‘GIFT OF LIFE’ donor, promoting the IKA’s 8 INSIGHTS FROM THE NATIONAL RENAL OFFICE Christmas organ – COVID-19 Service of Remembrance donor awareness and Thanksgiving 10 TRIBUTE TO OUR RETIRING PATIENT SUPPORT supplement Pages 27-38 campaign at the OFFICER – LORRAINE COSTELLO Mansion House, . 14 LANDMARK DAY AS RENAL UNIT OPENS Photo: Conor McCabe 16 BIG BROTHER SAVES THE DAY!

2 IKA SUPPORT WINTER 2020 people with disabilities and have on paired kidney exchange. COVID pandemic. stated we are willing to attend, to Unfortunately, at the time of going to , Micheál Martin, is present to the , on the press, the Northern transplant encouraging us to have a ‘meaningful’ experience of people with end-stage programme has temporarily ceased Christmas. This advice often resonates kidney disease (ESKD). In this organ transplantation due to COVID- with people who suffer or encounter submission, we gave a factual 19. It is hoped that the programme hardship, like many people with ESKD description of the impact of ESKD on will resume soon. experience. Such people value qualities people’s lives, not just on the patients We said an emotional goodbye to that really matter in life, like themselves but on their families also. two hugely valued and long-serving connection to other people, kindness These impacts range from physical, members of staff. Lorraine Costello, and compassion. I have observed all emotional, practical, and financial to who so many of you will know, has these priceless qualities in so many mental health issues. You can find this retired after 37 years’ service, at the people in the IKA community – from submission on our website. end of October, but she stayed staff, to branch officers, and to We had a good response to our involved until her labour of love, the patients and their families. I have also article on peer support in the Autumn Service of Remembrance and seen these qualities in the healthcare magazine. We have initiated a study Thanksgiving, was broadcast two professionals I have met who have on how peer support works in the IKA. weeks later. We will miss Lorraine and worked so hard to keep their patients It is very obvious to me that this is a her dedicated empathetic commitment safe, in very difficult and trying major strength of the IKA community, to patients. circumstances. They certainly deserve a and something we should build upon, Cyril Kelly, our long-standing well-earned break over Christmas, and as our members want more of this Financial Manager, who quietly we salute their dedication and type of support. worked away behind the scenes, has commitment. Hopefully, the upcoming It was inspiring to see a patient with retired after more than three decades vaccines will make life easier for all of end-stage kidney disease, Paddy Cox, of dedicated service. He will also be us next year. feature on the RTÉ Late Late Show, greatly missed by all who were Regardless of your expectations for not because of his illness, but because fortunate to have worked with him Christmas, we in the IKA wish you a he has developed a range of clothing and, in particular, the many Branch happy and ‘meaningful’ Christmas that for people on dialysis. Paddy Treasurers who have been guided by you can enjoy in a way that makes it epitomises the strength of people with him down through the years. special for you. ESKD. We have some samples of While Christmas can be a very I could not finish without Paddy’s Dialize Clothing, half zip-tops, happy time for many people, for acknowledging our heartfelt gratitude to give away to people who can others, it can be a very sad time. This and appreciation to organ donors and review and comment which will has not been an easy year for many of donor families. feature in a future issue (page 48-49). us and over the festive season we will Sallyanne and Derry Clarke, who Our new Strategy Plan, has been be unable to meet and socialise in the feature on the front cover, embody approved by the Board. I am very way that we would like. It seems this great generosity (page 6-7). It is confident that, working together, we surreal to think back to last Christmas people like Sallyanne and Derry, who can make an even bigger difference to and see how much our lives have with their selfless generosity, in times the lives of those affected by kidney changed since then. People with end- of great personal tragedy, continue to disease. stage kidney disease have been make the ongoing life-saving work of I am pleased to report that particularly affected, though some of organ transplantation possible. Donor Beaumont Hospital has signed a these people have remarked how families truly have given others the Memorandum of Understanding with coping with ESKD has improved their precious ‘gift of life’! ’s City Hospital resilience and ability to cope with the CAROL MOORE

18 HOME THERAPIES DELIVERIES – AN UPDATE 44 SOCIAL MEDIA & COMMUNICATION FROM THE NATIONAL RENAL OFFICE 46 WHEN CHRISTMAS DRINKING MAKES YOU FEEL 19 REFURBISHED WATERFORD DIALYSIS UNIT BLUE 20 SELF-COMPASSION 47 WOMAN PAYS TRIBUTE TO NURSING STAFF 22 KIDNEY FRIENDLY FESTIVE TREATS 48 BARBER’S DIALIZE CLOTHING A CUT ABOVE THE REST... 24 TRIBUTE TO OUR RETIRING FINANCIAL 49 NAME THAT CHRISTMAS SONG MANAGER – CYRIL KELLY 50 DONOR FAMILY SEES LIFE FROM BOTH SIDES 26 IRISH KIDNEY GENE PROJECT NOW 27 35TH ANNUAL SERVICE OF REMEMBRANCE 52 MARATHON WOMAN HAILS TAXI DRIVERS AND THANKSGIVING 54 AROUND THE BRANCHES 39 8 RUNAWAY CATS 63 MEMBERSHIP FORM 40 ALWAYS LOOK ON THE BRIGHT SIDE OF LIFE! 64 BRANCH SECRETARIES

IKA SUPPORT WINTER 2020 3 from The National Chairman

ho would have thought as we celebrated Christmas 2019, Wthat we were shortly to live through the strangest year in living memory. Even the wisest and most intuitive among us, failed to foresee what was ahead. As COVID-19 began to envelope the world in the early months of 2020, it presented an additional challenge to all, and none more so than renal patients. Thankfully as the year ends, the promise of vaccines in 2021 gives us reason to hope, but not to relax our guard. Therefore my Christmas message to you, is to take care of yourself and your loved ones. The mantra: ‘stay safe and protect yourself and others’, still applies. Some of us in the IKA have lost family members, and we remember them as we light a candle at Christmas, which is a powerful symbol of love and remembrance, but also of hope. All this was highlighted by our recent pre-recorded Service of Remembrance and Thanksgiving, which had a viewership of over 64,000. Our debt to those who gave the ‘gift of life’ is recalled anew as we approach the season of giving. Our IKA year has also been one of change, as our Renal Support Centre was sequestered, but we look forward to its eventual return to us, remodelled and improved, to conform to a new standard of accommodation. Further change saw the retirement of three valued members of staff: our Chief Executive Mark Murphy, our Patient Support Officer Lorraine Costello and our Financial Manager Cyril Kelly. As we welcome our new CEO Carol Moore, we thank our three retirees for their dedicated and devoted long years of service to the Irish Kidney Association. I also want to thank all our members and supporters. Without you we could not exist, and this includes our Branch Officers who often labour unseen. We thank our staff who have to cope with the changes we impose on them and our Board of Directors who keep us focussed on our goals while enduring Zoom meetings (our only way to communicate at present). I sincerely thank my two fellow Officers: John Whelan and Eddie Flood whose support and wise counselling I could not do without and for answering my almost daily phone calls. A special thanks to Carol for your rapid engagement with IKA affairs at a time of personal bereavement. I want to add a special note to all hospital staff who take care of renal patients. You put yourselves at risk, on a daily basis, to help and heal in these difficult times and in doing so have become our heroes. Regardless of whatever aspect of the IKA we represent, we all share the same purpose – to do all in our power to support and enhance the lives of all kidney patients. I wish all of you a very happy and safe Christmas and a happy and hopeful New Year. COLIN MACKENZIE

4 IKA SUPPORT WINTER 2020 Happy Christmas from us

We all need some fun in this pandemic, so when Ash suggested we dress up for our weekly online team meeting, we all jumped at the chance. See how many people you recognise?

From top left and across: Simon, Lenny, Carol, Ruth, Robyn, Patricia, Gwen, Ash, Deborah, Aoife, Amanda, Esther, Frank (who is making a good recovery after an operation, helped by the arrival of his first gorgeous grandchild Holly) and Colin. Books for your Christmas Reading

Ice Skating by Willie Faull The Art of Kissing by Miss L. Toe Guessing Your Presents by P. King Bad Gifts by M.T. Box 101 Cures for Indigestion by Ivor Payne Skiing for Beginners by I.C. Botham Eavesdropping by Noah Zee Parker Bell Ringing by Bing Bong Break of Your Engagement by Ida Ring Astronomy by C.D. Moon

IKA SUPPORT WINTER 2020 5 Derry & Sallyanne Clarke, Tomás O’Dowd, Lord Mayor of Dublin Hazel Chu

FAMILIES URGED TO DISCUSS THE ‘Gi of Life’

ichelin star Lady’s Hospital for Sick Children in restaurateurs By GWEN O’DONOGHUE Crumlin. Tomás and his father Sallyanne and Denis, were at two different Dublin MDerry Clarke, the hospitals, Crumlin and Beaumont, parents of a that day for tests as part of the deceased organ donor, met with screening process to determine if seven-year-old Tomás O’Dowd, a Denis might be a suitable living kidney patient, and they joined Lord kidney donor for Tomás. Amanda Mayor of Dublin, Hazel Chu, for a said, “A transplant will completely photocall at the Christmas tree transform Tomas’s life and will bring outside the Mansion House, on 2nd to an end the ten-hour nightly December 2020. They came dialysis which he has been receiving together to support the Irish Kidney for the past three years”. Association’s (IKA) Christmas Lord Mayor of Dublin Hazel Chu awareness campaign aimed at said, “I am pleased to support the encouraging families to take time Irish Kidney Association with this out over the festive season to hugely important campaign. Organ discuss their organ donation wishes. donation is an integral part of active Transplant recipients and many citizenship and it is beholding on us others will again be lighting a all to have the family discussion and candle in their homes this Christmas show our support to those who are to remember deceased organ Derry and Sallyanne Clarke waiting on an organ transplant list. donors and their families. This life saving heart, lungs, liver, kidney and I’ll be reminding my family at gesture is also in support of the pancreas transplants. Christmas time about my wishes to more than 2,000 people in organ Amanda O’Dowd from Dunquine, in be an organ donor and a candle will failure and over 500 people active Kerry, mother to Tomás, came straight be lit in the Mansion House”. on the transplant pool waiting for over to the Mansion House from Our Sallyanne Clarke and her Michelin

6 IKA SUPPORT WINTER 2020 Photos by CONOR McCABE

Amanda & Tomás O’Dowd starred celebrity chef husband Derry, of the award winning l’Ecrivain Restaurant, pledged their support of the campaign to honour their son Andrew’s memory. Andrew was just 16-years-old when he passed away on New Year’s Eve 2012. Although grief stricken with the loss of their only son, they made the profound decision to donate his organs. Sallyanne said, “Andrew and the entire family had discussed organ donation years before his untimely death. He had discussed Tomás O’Dowd it in school too. It is tragic for any IKA’s Chief Executive Carol Moore night, for ten hours at a time. He is in parent to lose a child but, we take said, “there are over 2,000 people in senior infants at school and really solace in knowing that our beautiful Ireland with kidney failure and Tomás loves it. Andrew gave the ‘gift of Life’ to three is just one of more than 500 patients Tomás has been receiving dialysis people and, by doing so, spared three who are currently on waiting lists for treatment for three years but only families losing their loved ones. We organ transplants including heart, recently entered the transplant pool, know that a little part of him lives on lung, liver, kidney and pancreas. It is as he had to reach a certain weight helping people. We urge all families to thanks to people like Sallyanne and and size to be considered for a discuss organ donation at this time”. Derry, with their selfless generosity, in transplant. Several members of our a time of great personal tragedy, who family were screened for suitability continue to make the ongoing life- and after initial screening, both Denis saving work of organ transplantation and I were considered a likely match. possible. Families of deceased orga n We are both going through the donors can be assured that over various stages of screening for living Christmas, all around the country, donation. If this fails our only hope grateful transplant recipients will be will be that another family, at a time lighting a candle in their honour. We of huge sadness, have the foresight have all taken measures to protect and compassion to think of others and each other from COVID-19. In these consider organ donation and that unusual times, each and every one of Tomás might benefit.” us can also consider others by having Tomás’s parents would like to the family conversation about organ acknowledge their gratitude for the donation.” care he receives from Consultant Mary Amanda O'Dowd explained, Waldron and other medical and Light a candle at Christmas "Tomás is our beautiful miracle child. nursing staff at Our Lady's Children's He was given little chance of survival Hospital Crumlin and to the transplant for people with organ failure in my early pregnancy scan, but he teams at Temple Street Hospital and and for organ donors defied the odds. He is a happy child, Beaumont Hospital who are managing and their families. despite his health setbacks and being the living organ donor screening hooked up to a dialysis machine every process.

IKA SUPPORT WINTER 2020 7 Insights from the NATIONAL RENAL OFFICE COVID19

By PROFESSOR GEORGE MELLOTTE CONSULTANT NEPHROLOGIST AND HSE NATIONAL CLINICAL LEAD IN NEPHROLOGY

OVID-19 was first identified transplant were categorised by the hospitals, throughout Ireland, to deal in in December 2019 HSE to be “highly medically with the increased numbers of and rapidly spread vulnerable” to the effects of COVID- patients developing kidney damage Cthroughout the world. The 19 and were advised to ‘cocoon’. as a result of COVID-19 and also to first case of COVID-19 infection was Another important medical provide enhanced isolation facilities reported in Ireland on Saturday 29th complication that quickly became to prevent the spread of COVID-19 in February 2020. evident was that COVID-19 infection the dialysis population. This early COVID-19 spread throughout causes kidney damage, particularly to response allowed hospitals time to Ireland in two major waves and at the those patients who developed the plan and install the necessary time of writing this, over 70,000 severe form of COVID-19 illness that equipment. In addition, where people have become infected and required hospitalisation. As many as possible, the NRO asked hospitals to sadly almost 2,000 have one-in-three of the patients admitted move patients to satellite dialysis died as a consequence, including 40 to the intensive care unit (ICU) had centres in order to free up capacity patients who had been on dialysis or evidence of significant kidney within the main hospital. living with a kidney transplant. damage and many required dialysis. This early planning proved critical COVID-19 infection is typically For some of these patients, the in managing the first COVID-19 associated with cough, high fever, kidney damage was permanent. surge. Ireland avoided the situation fatigue and loss of taste or smell. For The National Renal Office (NRO) seen in other countries such as the the vast majority of patients, it is a and HSE met in very early March to UK or Italy, where some patients mild illness and they recover fully. plan Ireland’s response to COVID-19 were unable to access standard However a small proportion of people pandemic with respect to kidney dialysis treatments due to vital develop a serious illness that requires disease. Two key imperatives were equipment shortage, and other hospitalisation. Patients with certain identified, firstly, to ensure that the patients could not receive their usual underlying medical conditions, such hospitals had sufficient capacity to three times per week haemodialysis as diabetes or cardiac disease are provide dialysis to the patients who treatments. more likely to develop serious illness. developed kidney failure as a Patients on medications that depress consequence of COVID-19 in a safe PROTECTING DIALYSIS PATIENTS their immune system are also at environment and, secondly, to protect As mentioned, dialysis patients higher risk of serious illness. Research patients with severe kidney disease were deemed to be “highly medically from around the world identified very from COVID-19 infection. vulnerable” but because they had to early, that patients on dialysis or living The HSE provided funding to attend for dialysis three times per with a functioning organ transplant support both of these initiatives. week, they could not cocoon. were among the highest risk groups The NRO, working with the Health of developing complications from ENHANCING DIALYSIS CAPACITY Protection Surveillance Centre COVID-19 and many of them died. With the help of HSE procurement, (HPSC), issued a guidance document, This was a very important finding. the NRO supplied additional dialysis on March 16th, to all dialysis units Patients on dialysis or with a kidney machines and related equipment to that included patient management

8 IKA SUPPORT WINTER 2020 strategies, isolation requirements, September. significantly better than other patient transport provision and a In June, the NRO met with the Irish countries in terms of patient stipend to facilitate self-driving by Renal Dieticians again and developed outcomes. Only about 5% of patients dialysis patients. a policy regarding a phased on dialysis in Ireland developed Other steps to protect patients reintroduction of eating on dialysis. COVID-19 infection, whereas in many included providing digital During the summer months, most other countries between 10% and thermometers to all haemodialysis units were in a position to restore 20% of patients became infected. patients so that they could identify eating on dialysis because the Some units in New York, Madrid and any early symptoms of COVID-19. national situation had improved. were reporting infection rates Home blood pressure monitors and Unfortunately, there has been a as high as one-in-three patients. In digital thermometers were provided second wave of COVID-19 infection Ireland, a higher number of to recent transplant patients in order and the government has moved the haemodialysis patients (115) acquired to enhance home monitoring entire country to a level 5 restriction. COVID-19 infection compared to 39 capacity and minimise the need for Dialysis and transplant patients were kidney transplant patients. Less than these highly vulnerable patients to not spared in the second wave of a handful of patients on home attend hospital for clinical review. COVID-19 infection and 40 more dialysis therapies became infected. The NRO monitored very closely patients became infected. The good This good result would not have the experience of nephrologists news is that the strict implementation been achieved without the support of around the world regarding strategies of a national lockdown, and the patients who accepted the severe to minimise risk of acquiring COVID- reintroduction of ‘no eating’ policy on restrictions imposed by COVID-19. In 19 infection. Italian nephrologists dialysis, has stabilised infection in this particular, I would like to pay tribute noted that dialysis patients and their high-risk group. to the dialysis patients who were families were at higher risk of One of the major consequence of affected by the ‘no eating on dialysis’ acquiring COVID-19. Some units the COVID-19 pandemic has been policy. As a nephrologist, I know how reported that wearing masks and not the impact on renal transplantation. difficult it would be for dialysis eating on dialysis reduced the spread The national renal transplant patients to fast for such a prolonged of infection. programme was suspended in early period. Dialysis units have always The NRO decided to provide March due to concerns regarding provided refreshments to patients surgical masks to all haemodialysis COVID-19 infection. While the receiving in-centre haemodialysis patients from April 7th, 2020 programme recommenced in June, treatment because they spend so onwards and with the support of Irish the number of patients who have much time away from their home; renal dieticians, issued a directive received kidney transplant in Ireland between travelling to and from the restricting eating on dialysis. These in 2020 is well below the usual unit and the four hours required to steps were taken well in advance of figure. In addition, as outlined above, deliver a dialysis treatment. It was not similar directives issued in other some people who developed kidney a decision taken lightly but was based countries. damage as a consequence of COVID- on strong solid clinical evidence. To 19, now require long-term dialysis. their credit, patients supported the COURSE OF COVID-19 INFECTION IN IRELAND The net result of all this is that decision and I look forward to the The first cases of COVID-19 more people are on dialysis this year time when we can once again infection in dialysis and transplant than any other time previously. The provide refreshments to our patients patients were reported in early proportion of people choosing home on dialysis. March. The number of these patients dialysis treatment has increased Finally, I also want to pay tribute to becoming infected by COVID-19 compared to other years. The the excellent work done by my infection increased by approximately challenge going forward will be to colleagues who ensured that every 15 to 20 patients per week, despite provide sufficient dialysis capacity to patient was able to receive their the imposition of national lockdown treat the increased number of treatment. I would echo the words of on March 16th, 2020 until mid-April. patients. the patron of the Irish kidney Following the introduction of a ‘no The opening of the new unit in Association, President Michael D. eating on dialysis’ policy and the Tallaght University Hospital is Higgins, who said “as a nation facing supply of surgical masks, the number welcome. An expansion in dialysis together the challenge of the of patients becoming infected capacity will be required in other coronavirus pandemic, we have been reduced to 5 per week and from centres and locations over the next so greatly inspired and uplifted by the mid-May, no patient nationally on few years. remarkable courage, compassion and dialysis acquired COVID-19 infection Looking at the international data, generosity of those who work on our until the onset of the second wave in Ireland appears to have done health services”.

IKA SUPPORT WINTER 2020 9 A tribute to our retiring PATIENT SUPPORT OFFICER Lorraine

ost of you are familiar with the name Lorraine MCostello, who has been our Patient Support Officer for many years. She is the person who has been looking after all those requests for patient aid, so important in these difficult times. She has also been working in advocacy, promoting patients' rights in a great number of situations that require persistence and extreme diplomacy in dealing with local authorities throughout the country. Demonstrating great intelligence and skill in articulating her thoughts, nobody could craft a letter like Lorraine! Hers was the calm reassuring voice when you rang for advice, she was the patient listener when you needed to be referred for counselling. While advocating for patients she forged a successful and mutually respectful relationship with nursing and medical teams in dialysis centres around the country and with Beaumont Hospital’s transplant teams and organ donor coordinators. But how much do you know about this remarkable, dedicated lady, who shuns the limelight and who has been the mainstay of IKA for nearly four decades? To realise the extent of her contribution to the Irish Kidney Association, we need to take a brief look back at the history of our Association. The idea of a national Association for people suffering from chronic renal failure germinated at the kitchen table of Patricia Doherty, then living in Glenageary, in conversation with her friend Thelma Trevaskis, both personally involved with the difficulties of life on dialysis, with very few kidney transplants taking place. At that time,

10 IKA SUPPORT WINTER 2020 Archbishop , Lorraine and Miriam Bryan at the Service of Remembrance & Thanksgiving in 2004

Bernadette Munnelly and Lorraine in 2001

Lorraine with President Mary McAleese in 2007 Lorraine with colleagues Ashling Hand and Deborah Cervi

in the 1970s, it was government distraught mother who had donated policy to have just three Dialysis Units her only child’s organs and had not in the , one each in received an acknowledgement. This Dublin, Cork and Galway. This posed prompted Lorraine to ask the newly huge hardship on patients, some of appointed Transplant Coordinator whom had to travel long distances for Phyllis Cunningham (who has since dialysis, with little hope of a kidney retired from this role), to set up a transplant. system, that is still in operation today, Patricia travelled around the where the donor family is contacted country, coming to Galway in February within six weeks of the donation. 1978, to find out the level of interest Lorraine then suggested to Patricia in forming a national Association to the idea of organising a Mass which look after the concerns of renal might offer some solace to donor patients and to promote organ families. That evolved from an annual donation. The result was a hugely By ANGELINE COOKE Mass in St. Mary’s Church, Haddington successful Inaugural Meeting, held in IKA Founder member, Galway branch Road, 35 years ago, attended by just a the auditorium of the now few hundred people, to the annual demolished Jervis St. Hospital in April branches, who formed the National ecumenical Service of Remembrance 1978, attended by several hundred Executive Committee, now the and Thanksgiving in Corpus Christi interested people from all over the National Board. When the occasion Church, Homefarm Road. This is such country. Thus, the Irish Kidney presented itself, she became our full- an important event on the IKA’s Association was born. Patricia became time Secretary, then our Patient calendar and is now attended by our first CEO, from 1978 to 1998. Support Officer, a post to which she approximately 2,000 people. Needless She moved to a tiny office in Eaton has dedicated herself for many years to say, every aspect of this Square, Monkstown, Co. Dublin and and always carried out with great exceptionally beautiful and moving in 1981 advertised for a part-time sensitivity, compassion, and discretion. event has been carefully coordinated secretary. This is where Lorraine's From Eaton Square, the IKA moved by Lorraine every year. long-standing involvement with the to Donor House in Pembroke Road, Although Lorraine was due to retire IKA began. Ballsbridge (opposite the US embassy) in May of this year (2020), when Galway born, a busy mother of two and from there, in 2000, to our COVID-19 struck, she chose to remain young children, also living in present location in Park West. on to be of further service to patients, Glenageary at the time, Lorraine was Lorraine has been with us all these in this time of crisis. As this year's highly qualified in secretarial work and years and has contributed hugely to Service of Remembrance and a part-time job suited her well. As she the evolution of our Association. A Thanksgiving, unfortunately could not took minutes at the meetings, she little-known fact is that many of our take place in its usual form, a ‘virtual’ became fascinated by the enthusiasm now long-established practices were service was televised on RTÉ 1 and and commitment of those early initiated by Lorraine. For example, in Radio 1 Extra on November 15th. founder members, elected by the response to a phone call from a continued next page

IKA SUPPORT WINTER 2020 11 Lorraine

contd... As we watched this in the comfort of our homes, we need to remember the months of research, time, and effort that Lorraine has put into coordinating every single aspect of the Service. What a farewell gift she has given to us, to be treasured! A hugely important part of the Service of Remembrance and Thanksgiving is the Roll of Honour, in Lorraine with members of the Liturgy Committee 2018 with Claire Byrne – Valerie Brady, Colin MacKenzie, Ellen Flanagan, which the name and details of each Peggy Eustace, Claire Byrne, Joan Gavan, Patricia May, Monica Finn organ donor are inscribed in beautiful calligraphy and is carried with great honour and respect to the . Again, it is most moving when, after the Service, donor families quietly queue to view the inscription of their loved ones. It was Lorraine who contacted the calligrapher, Annette Daly, who, to this day, continues to inscribe the names of donors, in her beautiful script. Looking after renal patients has Lorraine at the 9th European always been Lorraine's priority. In Day for Organ Donation & speaking to people who have worked Transplantation Walk in 2007 Lorraine with IKA PRO Gwen O’Donoghue

Tribute from PHYLLIS CUNNINGHAM Former National Transplant Co-ordinator, Beaumont Hospital

On the occasion of Lorraine’s retirement I would like to take the opportunity to express my admiration of, and immense respect for a wonderful person. Lorraine touched the lives of so many renal patients, their families and colleagues, with her warm, kind, friendly manner and with her unflinching generosity of spirit. Lorraine was a wonderful ambassador for the Irish Kidney Association. A committed, idealistic and dedicated worker, she was first and foremost a source of hope, kindness and practical support to renal patients and their families. Lorraine could be relied upon to leave no stone unturned in the interest of patients and in the interests of the wider functions of the IKA. Due to her positive ‘can do’ attitude Lorraine created an empathetic non-critical work environment focused on the ‘good’ in everyone. She carried out her duties in an inclusive, practical and efficient manner. The IKA have benefited hugely from Lorraine’s tenure with them. Lorraine was proactive in the acknowledgment of the ‘gift of life’ through organ donation. The Service of Remembrance and Thanksgiving which she organised annually, with such love and attention to detail, is one of the many testaments to this acknowledgement of the selflessness and generosity of donor families. On a personal level I wish to acknowledge my genuine heartfelt gratitude to Lorraine. I appreciate the unwavering support and advice Lorraine so frequently gave me over the 29 years that I worked in my role as Transplant Coordinator. We worked together on many projects, bouncing ideas off each other and brainstorming. I never failed to be impressed by Lorraine’s measured and balanced approach in all situations. She was a pleasure to work with and to have at the other end of my phone. Lorraine, congratulations on your retirement, you are a fantastic individual and deserve only the best. I wish you, your husband Frank and family every happiness for the future in your well-deserved retirement. PHYLLIS CUNNINGHAM

12 IKA SUPPORT WINTER 2020 Lorraine at her desk in Park West, November 2003

Lorraine with Joe Duffy in 2011

Lorraine and husband Frank

Colin Mackenzie Mark Murphy, Lorraine, Joan Gavan, 2020 Message from Lorraine and Deirdre Tyrrell in 2004 Hon. National Chairman closely with her in recent years, the replies were all consistent: she could not do enough for the patients. Her COLIN confidentiality was absolute, and she was also good fun! She was totally MACKENZIE reliable, and you knew that if you passed a problem on to Lorraine, you didn't have to worry about it In this year of change, it is my anymore. Remember that we went unwilling duty to announce the from three Dialysis Units in 1970s, to Garden in Salthill in 2014. He also retirement of Lorraine, who has 23 Units, 25 branches and over 3,000 participated in this year’s first ‘virtual’ been a most dedicated servant of Lorraine with Joe Duffy in ??? members. A huge cohort of patients Service of Remembrance and the Irish Kidney Association for the and their families seek support for our Thanksgiving. past 37 years. services, so there has been a colossal Lorraine was always the quiet I have had the pleasure of increase in her workload. person in the background who working with Lorraine on more than In her absolute dedication and ensured that these most important one occasion. Her unobtrusive sense of responsibility to the patients, events ran smoothly. presence combined with her even when ‘out of office’, she kept in I have touched here on just some of meticulous attention to detail has touch so that no patient would be the most important aspects of contributed to the production of neglected. Lorraine's work. I may also be writing many projects over the years. Her In addition, Lorraine organised and from a Galway perspective, but I know caring and attentive supervision of coordinated the National Launch of that dialysis and transplant patients Patient Aid and her confidential and each Organ Donor Awareness Week, from all over the country have approachable manner has ensured as well as carrying out the protocol for benefitted enormously from her help that this area of our work for those the reception of three Presidents. and hold her in extremely high esteem. in need has been addressed. President launched our So, Lorraine, on behalf of all the Over many years Lorraine has new multi-organ donor card in members of the IKA, ‘thank you’ most been the Staff member of our Ballsbridge in February 1991, sincerely for your dedication, kindness, Liturgy Committee and her work on President Mary McAleese officially empathy, sensitivity, and untiring work that Committee ensured that the opened Donor House, Park West in on our behalf. sensitivity and attention required 2000 and also in 2007 she attended While we wish you many long, was maintained. the IKA’s hosting of an international happy and healthy years of retirement Lorraine's work on the SUPPORT conference in Dun Laoghaire, Dublin with your husband Frank, son Colin magazine helped ensure the to mark the 9th European Day for and his wife Ciara, daughter Criodhna accuracy and high standard of our Organ Donation and Transplantation, and her husband Andrew, and your quarterly publication. Lorraine, we which was attended by delegates beloved grandchildren, we also hope will miss you as a team member and from 40 countries. President Michael that you will keep in contact with your gentle guide and advisor, and we D. Higgins attended the annual many friends in the extended IKA wish yourself and Frank, with your Service of Remembrance and family. grandchildren, a long and happy Thanksgiving in Galway Cathedral and What a wonderful legacy you are retirement. officially opened the ‘Circle of Life’ leaving us!

IKA SUPPORT WINTER 2020 13 The Vartry Renal Unit at TUH. LANDMARK DAY AS RENAL UNIT OPENS

he first sessions of dialysis have been care of renal patients together. delivered in the new state-of-the art Speaking on behalf of the Renal team at renal unit in Tallaght University Hospital, TUH, Professor George Mellotte, Consultant a ‘landmark’ day for patient care at the Nephrologist and HSE National Clinical Lead in local health facility. Nephrology, said: “This is a landmark day for TThe opening of the new renal unit also the patient care in TUH and could not have comes at a time when, following the arrival of come at a better time as Ireland has seen a Covid-19, the number of dialysis patients three per cent increase in the number of nationally has increased by six per cent. patients requiring dialysis every year for the last The second largest centre in the country for 10 years. Haemodialysis management, Tallaght University “Following the arrival of COVID-19, there has Hospital (TUH) was operating out of a 12-bed been an increase in dialysis patient numbers renal unit. nationally by six per cent. However, this week saw the opening of the “There are two reasons for this increase new Vartry Renal Unit on campus, a 2,700m2 nationally. unit built over two floors with 28 haemodialysis “Transplant activity was suspended during treatment bays and six single haemodialysis the height of the COVID crisis and has yet to rooms for immunocompromised or acutely ill return to previous activity levels. patients. “Also, one-in-three patients that end up in The unit also comprises of four home dialysis ICU as a result of COVID have kidney failure and training rooms and for the first time in Ireland, require dialysis. four self-care haemodialysis bays. “Some don’t recover and end up on There are also 14 offices, which for the first permanent dialysis, particularly those with pre- time will bring all of the different medical and existing kidney disease.” allied health care professionals involved in the Despite the challenges of recent months, the

14 IKA SUPPORT WINTER 2020 By MARY DENNEHY, The Echo Newspaper

Annamma Samuel, CNM2 Home Therapies with Professor George Mellotte, Consultant Nephrologist and HSE National Nephrology Lead in the new reception area where patients will arrive when they attend for dialysis in the Vartry Renal Unit at TUH.

staff in getting the unit open at a use around 10 million litres of water time when the Hospital is particularly annually, a volume anticipated to busy and continuing to provide double in the coming years as the dialysis treatment in the old renal number of dialysis sessions increase. unit. dialysis service at TUH has continued Once water arrives at TUH, it is “It has been a herculean task and throughout. processed through a dedicated is testament to the calibre of the “Nobody has missed a dialysis Dialysis Water Treatment plant on team we have here at TUH, despite session,” Prof Mellotte said. the hospital campus. the challenges we have faced this “The staff worked very hard, According to Lucy Nugent, Chief year staff have remained focused working late in the evening and into Executive of TUH: “The hospital is and work together to prove the best the night to make sure no one grateful to all those who have possible care to the patients under missed their treatment.” supported us in this journey to get our care.” Prof Mellotte added: “I and the to where we are this week, Funding for the building of the Renal Team are looking forward to delivering dialysis to our patients in Unit was provided by the HSE and caring for our patients in this new an incredibly impressive state-of-the- is one of the Government’s state-of-the-art facility. art facility. National Development Plan projects “Our patients attend for dialysis “I have to acknowledge particular 2018-2027. three times a week for up to four thanks to the incredible teamwork hours at a time, some have attended by our nursing, medical and facilities Reprinted courtesy of The Echo Newspaper for over 1,000 sessions. “I have no doubt our patients receiving their life- saving treatment in this brighter modern facility will be of great comfort to them.” The new unit was named after the Vartry reservoir and river in Wicklow, where the water supply for the dialysis service is sourced. According to TUH, the name also reflects the importance of water in the haemodialysis service, with each dialysis session requiring around 500 litres of raw water. Initially the new unit will Some of the Vartry Unit Renal team members before the new unit opened to patients.

IKA SUPPORT WINTER 2020 15 On 10th February 2020, AOIFE ADAMS received a life- changing gift from her younger brother, Daniel Watters, both from Dundalk, when they underwent a successful living donor en years ago, I was diagnosed with Stage 4 Chronic Kidney Disease. Through kidney transplant. adherence to a strict renal diet, under the watchful eye of Barbara Gilman Here Aoife shares her (dietitian) in the Mater Hospital, I managed to maintain my kidney function Tand live a relatively normal life (missing bananas and crisps!), until my health uplifting story. further deteriorated, two years ago, with the onset of kidney failure. Last year I was referred felt truly alive again. to Beaumont Hospital in Seeing Daniel that the hope that a pre- morning was a emptive transplant might wonderfully joyous occur before I would need moment, knowing that to start dialysis. My my ‘little’ brother was husband Mark, and doing well and that his brother Daniel, put sacrifice was worth it. themselves forward to Ten months later I commence the screening haven’t looked back. I’m process for living donation enjoying a whole new and, remarkably, both lease of life, thanks to were a match. Daniel was Daniel’s altruism, despite a full-house match, which having to cocoon as a he was told is quite rare, result of COVID-19 for and so took it upon most of this time. My himself to volunteer to husband Mark and donate his kidney as it daughter Sophia is was more likely to be delighted to have me back successful. What makes to full health. I now have this story even more the energy to play with extraordinary is that Sophia, and she calls Daniel is my only sibling. Daniel her ‘real-life The transplant came superhero’. It is only now just in time for me, who that I have my health back would have been starting that I realise quite how dialysis early in 2020. I unwell I was before the continued to work full- transplant. Every day I am time until the week before amazed at my energy the transplant, as a levels. Every morning my lecturer in Dundalk scar reminds me of the Institute of Technology, marvels of modern where my colleagues were medicine and the sacrifice very accommodating. my brother made, so that I The transplant took could have a second place on Monday, chance at living a healthy February 10th, 2020. By life. I don’t take a moment Tuesday morning, for granted, even during although still groggy from COVID-19. I know I am the transplant, I knew extremely fortunate and straight away that it was have so much to be Daniel and Aoife successful, as it felt like a thankful for. fog had been lifted and I Five weeks after the

16 IKA SUPPORT WINTER 2020 By AOIFE ADAMS transplant, the first lockdown began. Daniel and Aoife, post-transplant A couple of weeks after our surgery, the transplant unit had to temporarily cease transplants due to COVID-19. Daniel and I are extremely grateful and feel lucky that everything fell into place for us. Just like for everyone around the country, COVID-19 has impacted on both mine and Daniel’s lives. I spent much of the last ten months cocooning, enjoying cooking all of the foods I couldn’t eat before and having energy to do so. I am now back to work remotely and I’m delighted to have the energy to be back at work, even more so given the additional demands that working remotely places on people. Daniel also returned to work, Derek Hoey remotely, in the Civil Service in May. Daniel and his fiancée Mary were due to get married in September, but, to run his first ever marathon, just unfortunately, took the decision in prior to the second lockdown, for the May to postpone their wedding until Irish Kidney Association and raised October 2021, in light of the over €900 in the process. Derek’s pandemic. What a celebration that fundraising platform is still open at will be! Our parents, Margaret and https://www.justgiving.com/fundraisin Frankie Watters, are relieved and g/Derek-Hoey2 elated, in equal measure, that both of Prior to running the virtual Dublin their children are now back to full City Marathon in October, Derek, health and are counting down the from Dundalk, had only been an days until the wedding next October. occasional runner, running not more Daniel says that he felt “lucky to be than 5k from time to time. He set in a position to donate the kidney to about training harder with his local his only sibling.” He said, “We were tested to come forward and if Fighting Fit Gym in Dundalk, which he very fortunate, I was first tested in circumstances are right, go ahead credits for helping him to attain his October for donation and the surgery with donation. To see Aoife walking impressive first marathon finish time took place four months later. It was an down the corridor in St Damien’s ward of 3 hour 57 minutes. Derek’s wife extremely short process for us in before me was an extraordinary Niamh and two daughters, Neasa and comparison to others in similar moment and seeing her able to lift Fiadh provided moral support and situations. My colleagues in the Civil Sophie now makes it all worthwhile. treats, to help him accomplish this Service were very accommodating as As my older sister, Aoife always magnificent deed. Running a first well, which helped with this timeline. looked out for me when I was marathon was Derek's way of Looking back now, there is no younger (and still does!), it was nice acknowledging and paying tribute to difference in my health today than to be able to do something for her.” both Daniel and me. It also created there was prior to the surgery. I would Inspired by Daniel’s wonderful awareness and paid tribute to the urge anyone who is in a position to be deed, Mary’s brother Derek, decided amazing people that work right across our healthcare system, and indeed supporting bodies, such as the IKA, during these most extraordinary times. Both Daniel and I would like to Looking back now, there is no difference in my express our sincerest gratitude to our ” respective surgeons, Professor Ian health today than there was prior to the surgery. Robertson and Ms. Dilly Little, the staff on St. Damien’s Ward and the I would urge anyone who is in a position to be Transplant Co-ordinators. Beaumont Hospital, took amazing care of us and tested to come forward and if circumstances ensured the transplant process was as smooth as it could possibly be. The are right, go ahead with donation. work undertaken by them is truly contd next page...

IKA SUPPORT WINTER 2020 17 BIG BROTHER SAVES THE DAY! contd... inspirational, and never more so than fiancée Mary joke that they had in the current times. I would also like the more difficult time during to thank Professor O’Meara, Ms. the transplant, so myself and Barbara Gilman and the renal team in Daniel would like to just set the the Mater Hospital, whose care I have record straight, we will give you been under for the last ten years, and this one! ‘Thank you’ for all of where I once again attend following your love and support. my discharge from the Transplant Throughout the last ten years team in Beaumont Hospital. Daniel myself and Mark would not would also like to thank Mr. Michael have been able to keep up full- Allen, for his care during a minor time jobs and look after Sophia follow-up procedure in September, without the unwavering and his colleagues in the Civil Service support of my loving parents. for their support throughout the They kept it altogether, and still whole process. do! The IKA were a rock of practical We have been the recipients support for Daniel, myself and our of so much kindness and family, both during and after the generosity over the last number transplant process. The staff in the of years and months. We would IKA’s Renal Support Centre at like to extend our gratitude to Beaumont were amazing and the our wider family, circles of friends and Aoife (6) and Daniel (4) Centre provided a refuge for our colleagues, and Daniel’s soon to be Sophia. She keeps everyone going, family during the week of the brother-in-law Derek, for taking up particularly through the most difficult transplant. The work undertaken by the mantle of raising awareness of times (and lockdown!), never failing to the IKA is inspiring and the organ donation and much needed inspire us to keep going and to make importance of the Renal Support funds for the IKA, during these us laugh. Myself and Mark are Centre cannot be overemphasised. unprecedented times for charities. eternally grateful to Daniel, Sophia’s My husband Mark and Daniel’s A big shout out to my daughter ‘real-life superhero’. HOME THERAPIES DELIVERIES AN UPDATE FROM THE NATIONAL RENAL OFFICE rior to the COVID pandemic, Baxter delivery drivers for clinicians to use in consultation with their patients in would often deliver the pallet load of medical relation to their home dialysis supply deliveries. The final Psupplies to the room where the patient’s dialysis decision regarding implementation is a matter for the equipment was located. individual patient and their own clinician. Due to COVID-19 safety concerns in March 2020, the In general, dialysis patients are deemed to be HSE / Health Protection Surveillance Centre (HPSC) ‘extremely vulnerable patients’, and are therefore advised advised that delivery of prescriptions and medical material that they should check with all visitors that they do not should not cross the patient's threshold and should only have symptoms of COVID-19, before they allow them to be delivered to the patient’s doorstep. Based on this enter their house. They should also ask them to clean advice, the National Renal Office (NRO) issued a their hands (soap and water or hand sanitiser) and to “home dialysis delivery protocol during COVID-19”. wear a face covering. When Baxter Healthcare changed delivery company in The length of time the driver is in the patient’s house October, they discovered some patients had continued to should ideally be less than 15 minutes. Patients should receive ‘across the doorstep’ deliveries. This had occurred avoid being in the same room as the driver and ensure in certain individual circumstances where patients were room windows are open as far as possible. unable to manage doorstep deliveries. The HPSC general guidance can be found at the Once Baxter informed the NRO of these deviations the www.hpsc.ie website and the circular is called ‘COVID-19 NRO asked the HSE/HPSC for advice. Guidance for Older People and Others at Risk of Severe The NRO received new guidance from the HPSC, which Disease on Reducing Risk of COVID-19 Infection’. laid out the conditions upon which, ‘across the doorstep’ In conclusion, we in the IKA encourage patients to deliveries may be facilitated. It acknowledged that ‘across discuss arranging ‘across the doorstep’ deliveries with the doorstep’ deliveries pose additional risks to patients their local healthcare te am if they believe ‘across the and advised that these should be minimised, particularly doorstep’ deliveries are in their best interests. the duration of contact between the patient and the If you experience any problems, please let your driver. healthcare team know and if the matter is not resolved The new October 2020 protocol can be used as a guide contact us at Donor House.

18 IKA SUPPORT WINTER 2020 REFURBISHED WATERFORD DIALYSIS UNIT t is fantastic to see the Irish Kidney Association for refurbishment project in the project. “On behalf of Waterford dialysis unit come to a the renal service and all Iconclusion. They have increased the renal patients in the their capacity for training for southeast who will benefit peritoneal dialysis and they have from this project we would added a room for home haemodialysis like to extend sincere training and for minor procedures. gratitude to the IKA board In writing to Vera Frisby, Waterford who have so kindly Branch Treasurer, Hazel Bond from the provided a generous Home Therapies team in University financial contribution for Hospital Waterford expressed this project.“ appreciation for the support from the Describing how they plan to make the facility attractive for renal community come together. patients and staff she said, “We plan Congratulations to all involved. to get some artwork through the Waterford Healing Arts Team (WHAT). Artwork from one of our current Home Therapies patients and another from one of the Haemodialysis patients will also be displayed. One of these is a beautiful photography piece of the forget-me-not flower. We plan to attach an appropriate plaque under this artwork to acknowledge the IKA donation.” The “Friends of the Hospital” have also generously contributed in the planned purchase of new trolleys/chairs and some of the current Renal Home Therapies patients kindly contributed through donation and fundraising activities, all of which will benefit both current and future patient experiences. This project clearly illustrates what can be achieved when all sides of the

IKA SUPPORT WINTER 2020 19

JACK KORNFIELD hristmas? Really? If only I could say confusion around levels. “COVID-19, it’s Christmas, I’m sure it The Christmas period traditionally is Cwould be ok with everyone if you marked by spending time with loved took a ‘break’, actually take the full two ones, friends and family, the very thing weeks off. You have outdone yourself this we have been encouraged not to do all year, overachieved and impacted nearly year long. For many this Christmas might By AOIFE SMITH every household around the world in be a very different one. There are so some way. It really is time for you to slow many who have lost loved ones, lost jobs, down. Feel free to stop completely!” lost relationships and lost supports. My It is hard to believe we have entered thoughts are with you all. Many living the Christmas period and hard to believe with long-term health conditions, in order this year turned out the way it did. From to minimise any risk, will not get to enjoy one perspective, I feel the year the normal hustle and bustle of disappeared, weeks morphed into gatherings at this time of year. Maybe, Aoife can be contacted months without any real markers or this Christmas, giving ourselves a ‘break’ celebrations to create a timeline of is exactly what the doctor ordered. at Donor House memories, and from another perspective Recently there has been an explosion on 0818-543639 the year was heavy with so much of research showing the benefits and happening it kept me searching for importance of self-compassion for or 01-6205306 updates, living week to week, watching emotional wellbeing. Most people see or by email: [email protected] numbers go up and down within compassion as an admirable trait, a timeframes of lockdowns and mixture of good qualities such as

20 IKA SUPPORT WINTER 2020 balanced approach to our negative mindfully accept that the moment is emotions so that feelings are neither painful and embrace ourselves with suppressed nor exaggerated. kindness, remembering that Having compassion for ourselves imperfection is part of the shared really is no different to having human experience. This allows us to Often when compassion for a friend or loved one. hold ourselves in love and connection, When a friend is in distress, how easy is giving ourselves the support and it to notice their suffering, to respond comfort needed to bear the suffering. I mention to their pain with a feeling of warmth 2021 looks hopeful with or care, and to show a desire to help or developments of treatments to help us self­compassion support them in some way? How easy better manage the impact of COVID- is it to offer kindness and 19. Taking a more self-compassionate to people, I’m understanding realising that suffering, view of the emotional impact 2020 has failure and imperfection are all part of had on us all, will help us better greeted with life? When we are mindful of our own prepare for a more emotionally well struggles and respond to ourselves in balanced 2021. rolled eyes or the same way we would to a friend, Thank you to all who called or things can start to change for us. emailed the counselling services comments like Self-compassion can be a new way provided here at the IKA throughout of relating to yourself which can, like the year. Please continue to email me “is that not just any new behaviour, take a bit of with topics that might benefit you to practice. Remember it is a practice of read about. Your comments to me will goodwill, not good feelings. In other be completely confidential, no names self­pity or a bit words, even though the friendly, will be used, and no reference will be supportive perspective of self- made to any person or any specific self­indulgent”. compassion is aimed at the easing of email. If there is a common theme in suffering, we can’t always control the the requests, I will base the next article way things are. If anything, this year around that topic. has taught us that. If we use self- I would like to wish you all well over compassion practice to try to make our the Christmas, stay safe, and be pain go away by suppressing it or mindful of yourself and loved ones. fighting against it, things will likely just I look forward to seeing you all in kindness, mercy, tenderness, get worse. With self-compassion we 2021. understanding, empathy and sympathy along with a willingness to help others. But we seem less sure about self- compassion. Often when I mention self- compassion to people, I’m greeted with rolled eyes or comments like, “is that not just self-pity or a bit self- indulgent?” One of the biggest misconceptions about self-compassion is, it means feeling sorry for yourself. Self-compassion doesn’t allow you to tune out the bad stuff, it helps you to mindfully accept, experience and acknowledge difficult feelings with Recently I was gifted a lovely book, kindness, which actually helps in the ‘How to be Our Best Self in Times of processing of emotional upset. Crisis’, by Irish authors Stuart Breen Renowned expert and leading and Tom Gunning. The book helps the self-compassion researcher, Dr Kristin reader to understand the body’s Neff explains the core elements. reaction to crisis and how the Self-compassion entails being kind and physiological response impacts our understanding towards ourselves when we suffer, fail or feel inadequate rather way of thinking, often for long periods than self-criticism and judgement. of time. Self-compassion involves recognising that suffering and personal inadequacy In the spirit of passing goodwill are part of the shared human forward, I have TEN of these books experience – something that we all go available to the first ten people to through, rather than being something email me a request for one at that happens to ‘me’ alone. [email protected] Self-compassion requires taking a

IKA SUPPORT WINTER 2020 21

As Christmas Christmas treats such as dried fruit, dietitian about using a milk substitute chocolate, toffee, fudge, mince pies, to make up low phosphate custard. approaches we can all Christmas pudding and crisps are high Not to be forgotten is trying to get excited about the in potassium. Lower potassium keep to your low salt diet to help options to choose this Christmas control your blood pressure and thirst prospect of festive include desserts such as trifle, panna over the Christmas. Salt and salty foods. This year more cota, pavlova, spiced pears with foods can cause us to become very cream, apple tart, shortbread, ginger thirsty which makes it hard to stick to than ever Christmas will bread biscuits or sweets such as fruit the daily fluid allowance. This be a time to enjoy great jellies, jelly beans, dolly mixtures, Christmas swap salty snacks such as marshmallows, boiled sweets or crisps, salted nuts, salted crackers, and food. As a person with Turkish delight. Another option for processed meats such as ham, rashers, renal disease, you may those who love a mince pie at and sausages for lower salt tasty Christmas is to add stewed apple and options. Instead choose lightly salted feel restricted or even cranberries to your mince pies instead popcorn, crackers, rice cakes, a slice of worried about what you of dried fruit to reduce the potassium melon, or cucumber slices. Keep an content. If you are unsure as to eye on the amount of fluid you are can eat. Although some whether you need to follow a low drinking, if you are having an Christmas foods and potassium diet, please check with alcoholic drink choose a spirit or glass your doctor or dietitian. of white wine instead of mulled/red treats can be high in If you have been advised to follow wine or beer as it is lower in potassium, phosphate, a low phosphate diet during the potassium. (Check with your Christmas period it can be challenging doctor/dietitian if you can have and salt, they can also managing your dairy allowances to alcohol). be altered to be more help control your phosphate levels. As a final tip try to keep to your Some tips over this Christmas are usual routine, eat regular meals and renal friendly. having sorbet or cream with your avoid skipping meals as this will help desserts instead of ice cream and with keeping to your portions of choosing a portion of cream cheese festive treats when at family with crackers instead of having a gatherings. cheeseboard. You could also ask your Happy Christmas.

22 IKA SUPPORT WINTER 2020 BAKED PEARS Serves 4 (Recipe with thanks to Truly Tasty)

Ingredients 4 ripe pears 4 level tbsp reduced-fat crème fraiche ½ level tsp ground cinnamon 4 tbsp clear honey 8 gingernut biscuits

Method Preheat the oven to 190/373°F/Gas 5. Cut each pear in half, then place them cut-side up on a large baking sheet. Use a teaspoon to scoop out the cores and make a dip in the centre of each one. Sprinkle over the cinnamon and drizzle with a little honey. Roast the pears in the oven for 10-15 minutes. Meanwhile, put the biscuits into a food bag and use a rolling pin to crush them lightly. Remove the pears from the oven, then put a tablespoon of reduced fat crème fraiche in the dip of each pear. Scatter the biscuit crumbs over each pear to serve. Per Portion this dessert provides: 1 portion of fruit. If you have a daily allowance of dairy products, please note that there is crème fraiche in this dessert which needs to be taken from your daily allowance.

FRUIT PUDDING Serves 4 (Recipe with thanks to Food with Thought (NKF) By Ingredients ANN-MARIE MURRAY 450g Mixed Tinned Fruit (analysis with 300g raspberries, 150g strawberries) (Renal Dietitian) 25g Sugar B.Braun Wexford & Portlaoise 300ml Water and 5 Slices White Bread (2 days old), crusts removed 4 tablespoons of cream NIAMH KEARNEY (Dietitian) Method Mater Misericordiae Hospital, Drain the tinned fruit and place in a saucepan. Add the sugar and water and cook Dublin for 5 minutes. on behalf of the Place 3 slices of bread around the edge of the pudding bowl. Spoon half the fruit into the bread-lined bowl and place a layer of bread on top. Spoon in the rest of the fruit and finish off with another layer of bread. Put a plate on top of the bowl and leave in the fridge overnight Turn out and serve with 1 tablespoon of cream per serving. Per Portion this dessert provides: 1 portion of fruit; Low Fat. If you have a daily allowance of dairy products, please note that there is dairy (cream) in this dessert which needs to be taken from your daily allowance.

IKA SUPPORT WINTER 2020 23 A tribute to our retiring FINANCIAL MANAGER Cyril

Patricia Doherty

Cyril, Christmas 2006 arrival of baby Paul was scrutinised the IKA’s funds their officership. their crowning glory. moving and placing them in Cyril is liked, enormously, At Donor House, deposit accounts whilst by one and all – Officers, Ballsbridge, Cyril undertook monitoring their status. Board, members and the computerisation of the The care, respect and especially by the IKA staff. IKA annual records. He forbearance he There are not too many shared an office with demonstrated with Branch people, in life, that can Lorraine who worked Treasurers and volunteers, boast of this. His dark wit I, Patricia Doherty, first IKA mornings and he could not be overstated. His and droll sense of humour is Chief Executive who, along afternoons. helpfulness and patience, legendary. During his time with others, have been With the appointment of explaining banking practices with the IKA he was invited to write a tribute to Mark Murphy, Chief and training and assisting successful and popular, he Cyril, a Rathdrum, County Executive, Cyril moved to them, accordingly, was will be sorely missed by all Wicklow man whom the new premises, Donor House hugely appreciated by the for his discreet and gentle Board appointed over thirty in Park West and, with this, IKA’s volunteer Branch ways. years ago. He managed the his responsibilities grew Treasurers. The IKA wish him and IKA accounts and assisted exponentially. Similarly, each Honorary Mary a long, healthy and the branch managers with Cyril’s devotion to the National Treasurer, is happy retirement. Thank their accounting IKA, expanded his role into fulsome in their praise of his you, Cyril, for steering the responsibilities which he did, areas other than faithful and loyal assistance IKA ship, for many years, eventually moving them to accountancy. He fastidiously to them, in their role, during into a safe harbour. online banking. Cyril had been a very successful CAPD patient in A tribute to Cyril from VERA FRISBY the Meath Hospital whilst I would like to wish Cyril a happy and Thank you Cyril for your courtesy, studying accountancy. healthy retirement. It was an honour and a patience and kindness. I appreciate the On a personal note, the pleasure to work with Cyril, over the years, time and energy you have put into your Chairman Sean Donovan and his wife Doreen especially during my term as National work with the IKA over the years. () and I, were Treasurer and National Chairman. He was You will be missed in the office and by invited to Cyril and Mary’s always respectful, passionate, calm and all our members. wedding in Sutton, County professional. The accounts were always You can now do all the things you Dublin. The bride looked accurate and up-to-date when he wanted to do, and I wish you good health really beautiful and the later presented them to me. and enjoyment with your family.

24 IKA SUPPORT WINTER 2020 Message from Hon. National Chairman COLIN MACKENZIE

It is with regret that we learnt queries,and made the job of Treasurer in safe hands. recently that our Financial Manager, much easier. Most of us who take on Cyril stepped down on Friday, Cyril Kelly has decided to retire. Cyril the task of Treasurer are not 27th November which was also the is a long-time servant of the IKA, and accountants so it was important that date of our recent Board Meeting, at his meticulous attention to detail there was someone there who which tribute was paid to Cyril for ensured that the records of all understood that, and was his many years of dedicated service transactions were recorded with sympathetic to those with only a to the Association. Cyril's retirement forensic precision to detail. rudimentary knowledge of financial was marked by an appropriate Due to circumstances I had to procedures. gesture from the Board and members deliver three annual financial reports, As a co-worker, Cyril was extremely of the IKA, and his staff colleagues one as interim National Treasurer and popular with his colleagues, and will also recognised his valuable two as elected National Treasurer, so I be missed – especially when all get contribution. had some experience of Cyril's work back to normal office procedures. Cyril, on behalf of the Members, ethic. He presented Accounts that Cyril was a quiet, reassuring presence Branches, Board and Staff we wish were easy to read and understand, in Donor House and one always had you a long and fruitful retirement was always available to answer any the impression that IKA finances were after years of exceptional service.

A tribute from Cyril, Office 2007 VALERIE BRADY “I first met Cyril, many years ago as a young girl, when he found himself on the same hospital ward as my mother. Back then he was quiet and unassuming with a friendly smile and always a ‘hello’. Today, I am happy to say, he hasn't changed. Cyril has always been the unsung hero of the Association, working away in the background, always ensuring his work was completed meticulously. It did not matter what was happening in his personal life he always found a way to muddle through without complaint or excuses. As many a Branch Treasurer throughout the country will attest, Cyril on the ‘Walk for Life’ 2007 Cyril was always there supporting A tribute from them, no problem was too big or too small, there were no silly MARY YOUNG questions, just help and My late husband Richie and Cyril encouragement. Cyril has always formed a great bond right from the shied away from the limelight but beginning which lasted for many we all know how hard you have years. worked and your commitment to Later Cyril had to bond with me the Association. when I took up the position of The nice part about retiring from Offaly Branch Treasurer. He actually doing what you do so well is there earned the title of Treasurer, more is no more rushing around to meet than me, as I needed so much of his deadlines and complete tasks. You’ll help. He was kind and patient and have lots of time to make all your always available at the other end of dreams come true. The bad part is the phone for me. how much we will miss the Cyril is a true gentleman and I pleasurable experience of working will be forever indebted to him. with you. We wish you the all the Cyril may your retirement be all best and ‘thank you’ for your years you dream of. May you have many of dedication, enthusiasm and team blessings and may the sun always spirit.” Cyril with colleagues Deborah Cervi and Ashling Hand, 2006 shine for you.

IKA SUPPORT WINTER 2020 25 Irish Kidney Gene Project (IKGP) POLYCYSTIC KIDNEY GENE RESEARCH PROGRAMME

utosomal Dominant Polycystic project. Our goal is to understand the Kidney Disease (ADPKD) is the By genes that cause kidney failure and commonest genetic condition PROF. PETER J CONLON why patients might have different Aleading to kidney damage. clinical course. The Research involves This means that one or more a ten-minute telephone conversation of your genes are faulty, which results related to high blood pressure. in which a kidney doctor from in you making many cysts in your Although the kidneys are the main Beaumont Hospital will call you or talk kidneys. Inheriting a faulty gene of site affected, cysts may also develop in to you while at clinic, talk to you autosomal dominant means that each other parts of the body such as cysts about your kidney condition and a child that you have has a 50:50 in the liver. Many people with ADPKD brief family history. With your chance of inheriting the faulty gene remain well and free of problems for permission we will also review your and also developing the condition. years after the condition is diagnosed. medical records. The disease develops very slowly, No particular treatment may be We will either take a blood sample varies from person to person, and needed for a time. You would be when next at clinic or send you, by therefore symptoms and problems offered an annual follow-up for blood post, a detailed patient information usually do not develop until pressure check and blood tests to sheet, consent form and a DNA spit adulthood. Because the affected monitor your kidney function. tube in which we will ask you to give kidneys get bigger, you may Beaumont Hospital is undertaking us a spit sample. We will also use this experience pain in the tummy or research to help understand the genes sample to study your DNA to help lower back, blood in the urine, that cause ADPKD. We are looking better understand why you get kidney passing kidney stones and symptoms for volunteers to help us with this disease.

VOLUNTEERS WANTED If you are interested in helping us email: [email protected]

26 IKA SUPPORT WINTER 2020 The Irish Kidney Association's first virtual and 35th Annual Service of Remembrance and Thanksgiving

Recorded at Newman University Church, Dublin 2 Archbishop Dr Michael Jackson, Rev Gary Chamberland, Colin Mackenzie, IKA National Honorary Chairman Huge audience tunes into virtual Service of Remembrance & Thanksgiving

he Irish Kidney Thousands more people from at reached people from all over Ireland Association’s first foray home, and 24 other countries, and abroad, many unaware when into staging the 35th streamed the beautifully orchestrated tuning in as usual to watch the Annual Service of 55 minutes long production, within Sunday morning Service, and were Remembrance and days on RTÉ Player and many others presented with a hugely significant Thanksgiving as a ‘virtual listened into a radio broadcast on RTÉ and meaningful Service, thereby lifting event’ this year was in Radio 1 Extra while hundreds more the profile of the IKA and increasing response to the global watched it on YouTube. organ donor awareness. pandemic. The event was recorded on There were almost 4,000 In the Spring 2020, it became October 1st, 2020 at Newman interactions on the IKA’s Facebook apparent to the IKA’s Liturgy University Church, Dublin 2 and in the related to posts about the Service, in Committee that with COVID-19, with weeks that followed at other locations likes, comments and shares and in the safety being the main concern, there including the ‘Circle of Life’ National five days after its broadcast there were would be too many challenges to Commemorative Garden in Galway on 205 donor card requests, double the overcome in order to even October 10th. Its timely broadcast at average five day period in previous contemplate holding our usual live 11am on Sunday, 15th November, weeks. Over the week the IKA event which has in recent years 2020 fell during the month of All Souls Facebook reached 120,205 people, up attracted a congregation of over and on the same day as World Day of 29.4% on average and IKA’s 2,000 to Corpus Christi Church in Remembrance for Road Traffic Victims. Instagram reached 2,341 which was Dublin. Pulling in a viewership of 64,000 up by 14.4%. Since its inception 35 years ago, the households nationwide, the pre- The Organ Donation Transplant Service has become a hugely recorded production received hugely Ireland (ODTI), which holds the important event in the calendar of positive acclaim following its broadcast confidential database for organ donor members of the organ donation and on RTÉ One television. The production families, posted the IKA invitations, to transplant community. Out of a was laced with captivating music, view the Service, to thousands of collective strong will to fulfil this singing, poignant symbolic processions families around Ireland and hundreds demand, the Board of the IKA and meaningful scripture, homily and more living abroad. unanimously agreed to proceed with a testimony. A fortuitous outcome was that it virtual event. Video production

28 IKA SUPPORT WINTER 2020 company, Kairos Communications, was Harry Ward, Deirdre Faul engaged to produce it. From the outset everyone involved worked tirelessly to ensure it would be a befitting alternative to all those Services which had gone before, in paying homage to organ donors and their families who gave the ‘gift of life’ so that others could live. Participants at the Ecumenical Service included celebrity, clergy including two Archbishops from different churches, organ donor families, a transplant politician, transplant recipients, members of the medical profession, the cream of musical and singing talent, whilst patron of the IKA, donor families this unique annual he immediately declared that he Michael D. Higgins recorded an Service has become an anniversary to wanted to waive his professional fee. engaging message in Áras an both remember their loved ones, and Similar generous gestures of Uachtaráin. The President’s Address is for transplant recipients, the goodwill were proffered by the hugely on page 36. opportunity to honour and give talented Rev Steven Warner, Director This diverse cross-section of the thanks for the wonderful ‘gift of life’ of Music and Liturgy and Associate community was involved in the they have received. Director, Notre Dame-Newman recording which took over five hours at National TV and radio presenter Centre, as he waived all the musicians’ Newman University Church together , a former ambassador to fees. They, together with The Newman with many hours more, at other the IKA, discussed it on his RTÉ Vocare Ensemble Choir, delivered a locations. This culminated in a Service Radio 1 morning show explaining how wonderful repertoire of music and which was beautifully blended ‘struck he was’ by the Service, ‘how song. The Choir included Sopranos together, like pieces of a jigsaw, into an beautiful it was’ and ‘a beacon of Michele Dachtler Warner and Sarah almost seamless 55 minutes Service kindness in a world gone mad’. He Caldwell, Altos Anna Carney and suitable for broadcast. At all times spoke about how stark the image was Maddie Loftin, tenor Patrick McGinley restrictions were adhered to, social – the view of an empty church in and musicians, flautist Maedhbh distancing observed, while ensuring these times of COVID when watching O’Rourke, organist Joseph M. Bradley that the safety of participants was at a testimony by Alan Finnegan, a and Steven, himself, who played the forefront for its organisers. member of a deceased donor family. guitar. Colin Mackenzie, IKA Honorary Ryan also paid tribute to Lorraine The music seamlessly blended National Chairman, carried out his role Costello, who has been working on together with Cantor Dr. Sharon as Narrator, with great aplomb, and the Service since it began in 1986, and Lyons, the highly respected Soprano acknowledged the magnificent setting he commended Lorraine for her who performed as a soloist at Pope of Newman University Church. He service to the Association as she now Francis’s Papal Mass in the Phoenix thanked all those involved in the reached retirement. Park. Sharon’s performance as Cantor production. He captured the objective In publicity, leading up to the event, was exceptional and added a uniquely and meaning of the Ecumenical Service the public were encouraged to actively enriching atmosphere to the Service. beautifully in his narration when he participate in this year’s Service, contd next page said, ”It (the Service) provides us with particularly during the very symbolic Cantor Dr Sharon Lyons an opportunity to express our sincere ‘Service of Light’ ceremony, to light a gratitude to all organ donor families candle in memory of deceased donors. who, through their profound This ceremony was led by two compassion and generosity, have given members of the successful Transplant hope and new life to many patients. Team Ireland, liver transplant recipient You are all welcome, regardless of your Deirdre Faul from Dalkey, Co. Dublin faith or philosophy. Donors, from all and Team Captain Harry Ward, from backgrounds, have given the ‘gift of Baldoyle, Co Dublin, a kidney life’ and patients, from all transplant recipient. Both slowly and backgrounds, have received the ‘gift of respectfully lit numerous candles life’.” representing organ donors which were All involved in the filming of the laid out on marble railings at the front Service were invested in acknowledging of the Altar in the beautiful Church. deceased donors and their legacy. The significance of this aspect of the Throughout the years the Service has Service was not lost on the Sound been a mixture of sadness and joy for Engineer Adrian Cunningham, in the the families of organ donors and adjoining room, who was so moved transplant recipients alike. For many after watching in on a TV screen that

IKA SUPPORT WINTER 2020 29 Service of Remembrance & Thanksgiving

Eleanor Shanley, John Feeley Strange Boat We're sailing on a strange boat Heading for a strange shore We're sailing on a strange boat Heading for a strange shore Carrying the strangest cargo That was ever hauled aboard

We're sailing on a strange sea Blown by a strange wind We're sailing on a strange sea Blown by a strange wind Carrying the strangest crew That ever sinned

We're riding in a strange car We're followin' a strange star We're climbing on the strangest ladder That was ever there to climb

We're living in a strange time Working for a strange goal We're living in a strange time Working for a strange goal We're turning flesh and body Into soul

appearance on a tree branch behind Eleanor, Indeed, Sharon also generously an almost magical addition to the donated her stipend to the IKA, which already special introduction. was an extremely generous gesture in The Book of Remembrance, a ‘Roll a COVID time when musicians are of Honour’, has been an integral part encountering so few opportunities to of the Service since its inception with perform for their livelihoods. the names of organ and tissue donors Also waiving their fees were the carefully inscribed by calligrapher hugely talented Eleanor Shanley and Annette Daly from Glenageary, Classical Guitarist John Feeley. They Co. Dublin for the past 35 years. were filmed at the ‘Circle Annette Daly of Life’ Commemorative garden as Martina Goggin introduced the Service. They performed the Gina Lenehan hugely appropriate song, Annette was filmed prior to the ‘Strangeboat’, which was commencement of the Service captivating as its lyrics carefully inscribing a donor’s details resonated with many for into the book. The Book was carried the times we are living in. to the Altar by pharmacist Gina An unexpected chorus of Lenehan, a heart transplant recipient birds joined in and a robin and mother of three from , made a special Dublin.

30 IKA SUPPORT WINTER 2020 This year’s Service included a very Rev. Gary Chamberland special message, of 5 minutes 45 seconds duration, from the President of Ireland, Michael D. Higgins, Patron of the IKA, in which the President paid homage to deceased and living organ donors, who have made possible “that most precious gift, of life and living.” Such an endorsement, from the highest office in the land, demonstrates the importance and high regard held for the IKA’s Service which pays homage to organ donors and their families. Grateful transplant recipients including heart, lung, liver and kidney, and members of deceased organ donor families, were filmed carrying out various symbolic roles for the pre- recorded Service. also from the Book of Luke about a become loving people thinking not Chief Celebrant Rev. Gary person stopping on the road to show just of ourselves. But even in the Chamberland, c.s.c, Director of Notre kindness to a stranger saying, “The midst, as in your case, of the greatest Dame-Newman Centre read from the Good Samaritan in the Christian sorrow recognising the need of book of the Gospel of Luke, ‘Jesus tradition points us towards selfless love someone we may not know and Heals the Paralysed’, Luke 5:17-26 and life renewed. Someone on the changing a situation which seemed which describes how strangers help a road stops and cares without tragic and hopeless and meaningless paralytic man by carrying him from hesitating to count the cost. People into a gesture of kindness and love outside on his bed and lowering him like our donor families and our that endures.” down from roof tiles to be in front of recipients today are involved in the Jesus who healed him.” practical expression of care. They live Archbishop of the spirit of this parable daily.” Dublin and Glendalough Dr. Michael Catholic and Jackson, attended Newman Church to Primate of Ireland Diarmuid Martin deliver his carefully projected Homily shared a Reflection, via video from his residence, explaining that this might be his last time to be involved with the Service of Remembrance with his impending retirement. His Reflection followed the same theme about helping strangers in need, as Archbishop Jackson’s Homily and Rev. Chamberland’s reading. In an extract from Archbishop Martin’s Reflection, when he spoke directly to donor families, he said that “If God is love being a follower of Jesus and being a believer must mean that we, too,

Sallyanne Clarke with a photo of her late son Andrew In the same Church, that her deceased donor son Andrew was baptised, Sallyanne Clarke delivered the second reading from the Book of Revelations (21:1-5) ‘A New Heaven and New Earth’. Sallyanne and her husband Derry run the Michelin star Archbishop L’Ecrivain Restaurant on Dublin’s Archbishop Dr. Michael Jackson Diarmuid Martin Baggot Street. contd next page

IKA SUPPORT WINTER 2020 31 Service of Remembrance & Thanksgiving

Alan Finnegan shared a very moving Senator David Norris Transplant Service, we have now testimony about the profound impact performed more than 5,000 (kidney) of the passing of his late brother and transplants and more than 2,500 deceased donor Paul, the celebrity people enjoy the extraordinary benefit chef, who passed away in 2014 less of a functioning kidney transplant. As than a year after he famously prepared a transplant surgeon, I and my a meal for Michelle Obama and her colleagues have the privilege of seeing daughters when they visited the family first-hand the tremendous benefit that pub Finnegan’s in Dalkey, Co. Dublin. a successful kidney transplant has for Senator David Norris, a skilled orator each recipient. None of this would be and human rights campaigner, who possible without the extraordinary underwent a liver transplant in 2014, generosity of each organ donor who recited Nobel prizewinner Seamus literally gives the ‘gift of life’ and Heaney’s aptly chosen poem, 'Miracle', living. It is an amazing thing to at Newman University Church. The witness the transformation of a poem adapts a New Testament miracle successful transplant not only on the to pay tribute to those who came to his recipient themselves, but on all the aid in crisis when he suffered a stroke. expressed “from the bottom of my people they love. I know that each National treasure Majella O’Donnell, heart to all the families who have recipient holds their donor close to whose mother had experienced selflessly donated the organs of a their hearts and constantly remembers temporary kidney failure, sent a loved one at a very, very difficult time, them with gratitude and affection.” message of encouragement from thank you!” Dilly Little outside her home in Donegal and Dilly Little, Transplant Surgeon and Surgical Director of the National Kidney Transplant Service recorded a message standing beside a memorial sculpture, to commemorate organ donors, located just outside the front entrance to Beaumont Hospital. The sculpture was commissioned by the IKA and designed by Denis Goggin of the Strangeboat Foundation. In her address she Majella O’Donnell said, “In the National Kidney

Alan Finnegan Alan Finnegan Testimonial ix years ago my brother Paul suffered a catastrophic cerebral aneurysm on the eve of his 48th birthday. Two days later we gathered as a family Sand with the kind and gentle guidance of the staff of St Vincent’s ICU we made the heartbreaking decision to let him go. The decision to donate his organs was easily made, a moment of catharsis in a wave of grief. Later that night after saying my final goodbye to Paul, a nurse informed me that the organ transplant crew were ready to go and recipients had been notified for transplantation. I drove home that night strangely elated, my sorrow tempered by the knowledge that Paul’s story hadn’t quite finished. In the weeks that followed we struggled with the giant void Paul’s death had left in our lives, his absence felt in his family home, the workplace we shared together, at birthdays, communions and funerals. We were informed that the transplantation of his kidneys and liver had been successful, news which came as solace to us all but it wasn’t until we received a letter one Saturday morning some months later that the magnitude of organ donation was made apparent to us. Here in a handwritten note was the testimonial of a life changed, of new beginnings thanks to the transplant of one of Paul’s kidneys. In that moment I recognised that the act of organ donation was as much a gift to us as it was to the recipient. On behalf of everyone who holds Paul’s memory dear I wish to thank the brilliant transplant teams in Beaumont and St.Vincent’s hospitals for the gift they provided us by bringing renewed life to others.

32 IKA SUPPORT WINTER 2020 Prof. Jim Egan

Prof. Jim Egan, a lung physician who is also Director of the HSE’s Organ Donation Transplant Ireland (ODTI) spoke the first reading, Ezekiel 34:11- 10, ‘I shall keep my sheep in view’. Carrying the Cross to the Altar, in full uniform, was Barrack Quartermaster Sergeant Paul Gifford, Carol Moore from Clondalkin, Co Dublin who is Tadgh Farrell stationed at Cathal Brugha Barracks University Church. Garrett Ffrench and who underwent a kidney underwent two single lung transplant from a deceased donor transplants, a year apart. 17 years ago. At the Service, forget-me-not On her very first day, as the newly flowers, the symbol of transplantation, appointed Chief Executive of the IKA, were carried to the Altar by Pauline Carol Moore expressed what an Callaghan, from Old Bawn, Tallaght honour it was to be given the role of and her grandchildren, twins Layla and carrying the ‘Book of the Gospel’ to Maddie Rose Henderson (9). In 2014 the Altar. Pauline travelled across the world to Australia to donate a kidney to Layla when she was just three-years-old. Taking part also and carrying a large organ donor card to the Altar was Natalie Johnson from Balbriggan, and her daughter Claire (16). Natalie and her two daughters made the selfless decision to donate her husband and the girls’ father Roy Johnson’s organs when he passed away during the Maddie Rose and Layla Henderson Summer of 2020. contd next page with grandmother Pauline Callaghan

Barrack Quartermaster Sergeant Paul Gifford Also taking part in the opening procession were Tadhg Farrell (13) from Coolock and Garrett Ffrench from Mulhuddart carrying candles to the altar. Tadhg was born the day after his late grandfather Michael Golding, from Coolock, passed away and his organs were donated. Tadhg’s grand aunt Lillian Byrne, sister of the deceased, accompanied Tadhg to Newman Claire and Natalie Johnson

IKA SUPPORT WINTER 2020 33 Service of Remembrance & Thanksgiving

The Liturgy Committee was intent that the ‘Circle of Life’ National Commemorative Garden in Salthill, Galway be showcased as part of the Service so that viewers were introduced to this special place to remember organ donors. The Garden was the brainchild of Martina and Denis Goggin, parents of a deceased donor Éamonn. Martina spoke eloquently as she introduced the Garden and then following Eleanor Shanley and John Feeley’s performance of ‘Strangeboat’, she directed viewers on to Newman University Church for the beginning of the Service. Filmed at the ‘Circle of Life’ Commemorative Garden also were founding member of the IKA Angeline Fr Finbarr Treacy with Denis and Martina Goggin Cooke, a kidney transplant recipient from Maunsells Road together with Bernadette Glynn, from Peterswell, Co Galway, the widow of the late Albert Glynn who, also, was one of the founder members of the Association. Bernadette, a retired nurse, is enjoying the successful longevity of a kidney transplant she received from a deceased kidney donor almost 42 years ago and is one of only a few people in Ireland whose transplant has lasted so long.

Bernadette Glynn and Angeline Cooke Marieann Keaney from were involved in its planning and Roundstone, Co Galway was content. They include:- Colin present in the Garden also with Mackenzie, IKA Honorary her ten-year-old son Bernard Óg National Chairman, Lorraine who underwent his life-changing Costello, the recently retired IKA kidney transplant from a Patient Support Officer, Gwen deceased donor in 2016, three O’Donoghue, PRO, IKA, and four years after his cousin Thomas IKA board members: Valerie tragically passed away in Brady, Joan Gavan, Monica Finn, Australia. His family made the and Pat May. courageous decision to donate The Liturgy Committee would his organs. The late Thomas's like to thank all involved as mother Ann and sister Lauren mentioned above but also Roger Keaney, who live in Roundstone, Childs, Head of Religious were also present for the programming at RTÉ, for kindly recording. (story on page 50-51) agreeing to broadcast the Producer Fr. Finbarr Treacy Service. It is noteworthy that the from Kairos Communications and Sunday televised Service has Steven Warner, Associate become hugely popular since Director at Newman University COVID placed restrictions on Church, collaborated closely with churchgoers. Special mention is Lauren, Ann and Bernard Óg Keaney the IKA’s Liturgy Committee, who also given to Fr. Finbarr Treacy,

34 IKA SUPPORT WINTER 2020 Kairos Communications and his hugely gifted camera crew, Ita and Seamus Callagy, and Sean Connelly, for their camera work. A wonderful production was delivered, reflecting a determined and concerted wish by all involved, to pay tribute to courageous organ donors and their families in a deeply respectful way.

Members of the Liturgy Committee: Lorraine Costello, Gwen O’Donoghue, Colin Mackenzie, Joan Gavan, Valerie Brady evolved from a grieving organ donor Co-ordinator, Phyllis Cunningham, it mother who contacted Lorraine Costello was decided that a Service be held to at the IKA in their first office in publicly acknowledge and recognise the Monkstown, Co. Dublin. The mother courageous generosity of organ donors The magnificent flower expressed her distress and sadness that and their families. arrangements, which adorned the her son’s organ donation had never The inaugural Service, in 1986, had church were arranged by Una been acknowledged. At the time there an attendance of 300 people in St Whelan from Bray, a member of the was no system in place at the Old Jervis Mary’s Church, Haddington Road, IKA’s Dublin East/Wicklow branch Street Hospital to acknowledge and Ballsbridge. Since then, the numbers and wife of the IKA’s National thank organ donors and their families. have increased annually with an Honorary Secretary, John Whelan. In consultation with the then newly attendance more than 2,000 people The IKA’s Lorraine Costello and appointed National Transplant now attending from all over Ireland. retiring Chief Executive Mark Murphy prepared the Altar and lectern, covering them in hand Reflection by embroidered linen cloth which featured the forget-me-not emblem Archbishop Diarmuid Martin whilst they also laid the candles for the ‘Service of Light’ ceremony on ’ve been involved with the annual Service of Remembrance and Thanksgiving the marble railings. of the Irish Kidney Association for many, many, years now. It has always been Board member Valerie Brady, a very moving experience. This is probably my last time to be able to be there performed the role of floor cIas Archbishop of Dublin as I near retirement. manager at Newman University Your gatherings are unique. A moment of your grief had become a moment Church, ensuring that everything of promise, promise of newness and life for somebody else. Your generosity at a ran to plan in order for participants moment of grief benefitted another family enormously as they receive a precious to be able to leave promptly once gift from someone who they may have never known. their roles were completed, and Humankind was created as a family. The human family is built up by solidarity that social distancing was observed. and is broken down by self-centeredness. We all know the story of the good Photographers Conor McCabe Samaritan, about this man who was taken by thieves, left abandoned on the from Dublin and Galway road. Various notable people walk by and leave him. And then the good photographer Andrew Downes Samaritan comes, and he is moved to compassion. And he takes him and puts captured the participants beautifully him on his shoulders, brings him to an inn and ensures that his wounds are at the Church and the Garden. healed. The IKA would like to And we naturally look to the good Samaritan as the hero of the story. But acknowledge the support of the what do we know about the man who was found lying on the road. The Gospel media for highlighting the Service. tells us nothing – no name, no nationality, not status, no family tree. And the The IKA placed small adverts on the moral of the story is that we don’t need to know those type of details. All that is back pages of three national important is that this was a man, a human being in need, and that should be newspapers on the two Saturdays enough to move each of us to compassion. Also, in today’s word, if God is love, leading up to broadcast while one being a follower of Jesus and being a believer must mean that we too become of the papers, , loving people thinking not just of ourselves. But even in the midst, as in your kindly gave up free advertising case, of the greatest sorrow, recognising the need of someone we may not space on several other days. know and changing a situation which seemed tragic and hopeless and The concept for the Service meaningless into a gesture of kindness and love that endures.

IKA SUPPORT WINTER 2020 35 Service of Remembrance & Thanksgiving Message from President Michael D. Higgins

welcome the opportunity to participate in today’s Service of Remembrance and Thanksgiving, organised by the Irish Kidney Association. In the more than half a century since the first kidney transplant took place in Ireland, that most precious Igift, of life and living, has been offered to thousands of our citizens. This life- saving, or life-changing, gift is made possible through a generosity of human nature so worthy of recognition. Today’s event is, thus, an important one, bringing together those generous individuals and families who have performed an act of great altruism towards a fellow human being; and the grateful recipients of that profound action of human solidarity. Some of you with us today may have made this gift at a time of great personal tragedy. Others amongst you are living donors who have selflessly donated a kidney to a friend, family member or stranger in need. All of you have enriched and extended the lives of others, have played a vital role in the making possible of new chapters of hope and possibility for those suffering from kidney failure. That so many recipients and their families are joining us here today is surely a powerful testament to the great gratitude felt for the new lease of life that has been offered to them or their loved ones, and a demonstration of the great difference an organ transplant can make to a recipient’s life and to the lives of their family and friends. Among the events Sabina and I have organised since I became President, I recall a St. Patrick’s Day reception held in Áras an Uachtaráin in 2018 for organ donors, recipients and their families. The wonderful sense of solidarity between all those in the room on that St Patrick’s Day was deeply moving and remains with us. In terms of medical science and practice, organ transplant is one of the greatest medical advances of this modern age. Currently, some four-thousand people in Ireland are enjoying an extended and better life because of the generosity of organ donors. However, while transplant is now a commonplace technique in Ireland, there are, unfortunately, too many people who continue to die each year while waiting for transplants. Encouraging and achieving donation remains, I am aware, a challenge. It is critical that we all play a part in nurturing both public and private conversations on the importance of organ donation. We know that deceased organ donation remains rare in Ireland with an average of 80 multi-organ donors from the approximately 30,000* deaths each year in this country. We also know that currently some 500 patients are awaiting life-saving transplants and, you all will understand, that behind those figures lie the many anxious family members desperately hoping their spouse, child, parent or sibling will become a beneficiary of the powerful gesture of organ donation. Discussion around organ donation is, of course, and will always be, a very sensitive and emotional one, tied up as it is with thoughts of loss and bereavement. It can also, however, be a conversation of hope and renewal, on commitment and the intangible joy of giving, of life continuing, and of the wonderful legacy it constitutes, one that we can leave behind by donating our organs to others. I am well aware of recent months having been particularly difficult for many of those awaiting kidney transplants. The risks of COVID-19 saw the upsetting, but necessary, halting of the transplant programme in March, with significant anguish and disappointment for many patients whose transplant had been scheduled, or those who were awaiting that all important telephone call to tell them a kidney had become available. I am so glad that, after many weeks of worry and uncertainty, the programme has now resumed; that once more patients are receiving the cherished ‘gift of life’ from generous donors, or from those who have the courage to translate a tragic loss of their own into a profoundly generous act towards others. The development of organ transplants stands as one of the great triumphs of human scientific achievement. It also stands as testament to the great spirit of human solidarity that exists here in Ireland and across the world. May I sincerely thank all those of you here today who have donated an organ to a friend or loved one, or who have made the brave decision to donate the organs of a deceased family member to a stranger in great need. Your citizenship, compassion and care is truly something to be cherished, acknowledged and celebrated. Mar focail scoir, finally, may I also extend my gratitude to the Irish Kidney Association for all they do in the support of patients suffering from kidney disease, and for the support they give to their families. It is an Association of which I am very proud to be patron, and I wish you every success as you continue with your vital work. Traoslaím libh. Go raibh míle maith agaibh go léir, agus beir beannacht.

*A much smaller number die in circumstances suitable for organ donation

36 IKA SUPPORT WINTER 2020 A photo of deceased donor Michael Golding held by his grandson Tadhg Farrell, Mark Murphy Rev. Steven Warner the deceased's sister Lillian Byrne and Barrack Quartermaster Sergeant Paul Gifford Homily by The Most Reverend Dr Michael Jackson Church of Ireland Archbishop of Dublin St Luke 10.37: The young man answered, The one who showed him kindness. Jesus said to him, go and do as he did. e celebrate today a ‘gift of life’ that moves positively and lovingly in two directions at the same time. Donor families who have selflessly and generously thought of others ahead of their own Wloved one whom they have lost have given life to someone urgently awaiting a vital organ. They have done this at the heart of their personal grief. The person who receives a vital organ shares the gift of life renewed with everyone he or she meets. People such as this do so by the radiant determination to live life to the full as a tribute and an honour to their donor. Joy and sorrow, loss and restoration come together in this ‘gift of life’. The Good Samaritan, within the Christian tradition, points us towards selfless love and life renewed. Someone on the road stops and cares without Lorraine and Frank Costello hesitating to count the cost. People like our donor families and our recipients today are involved in this practical expression of care. They live the spirit of this parable daily. This ancient story has a meaning today that is at the core of our gathering. This human story is the answer to the question: But who is my neighbour? St Luke 10.29.

The Finnegan family...Neil, Alan, Michelle and Cathyanne

Garrett Ffrench

IKA SUPPORT WINTER 2020 37 Service of Remembrance & Thanksgiving

Marieann Keaney, Lauren Keaney, Denis and Martin Goggin, Bernard Óg Keaney(10), Bernadette Glynn, Fr. Finbarr Treacy, Ann Keaney, Angeline Cooke, Brendan Harding,Eleanor Shanley and John Feeley.

Marieann Keaney at the ‘Remembering You Trough’

The ‘Remembering You Trough’ where people can throw a small stone into, in memory of a loved one

Eleanor Shanley

Ann Keaney at the ‘ Bernadette Glynn Remembering You Trough’

38 IKA SUPPORT WINTER 2020 Patrick and Regina Williams day until they each reached their final 150 kilometres, after 30 days. Between them they clocked up an impressive 900 kilometres while Nicole (19) and Sarah (14) clocked up an additional 120 kilometres. Speaking ahead of the challenge, Patrick Jnr. said, “during COVID-19 restrictions, our group has been keeping in touch on our WhatsApp running group, and we like to challenge ourselves as some of us also did a similar 5km challenge throughout December last year. I am delighted they have come behind this challenge and that they are supporting me by honouring the memory of my father, whose health failed considerably in his final year before he passed away, three years ago. They are also supporting me and my family in helping us to raise funds for the IKA as well as to shine a light on the plight of people on long-term dialysis and people with other types of 8 RUNAWAY CATS organ failure. Myself, Regina, Nicole COMPLETE 1020KM CHALLENGE IN 30 DAYS and Sarah and my extended family think that this is a nice tribute to the group of runners memory of my father. pledged to run 5 kilometres By “My mother Elizabeth and my five every day throughout GWEN O’DONOGHUE brothers and sisters saw my father’s November, starting on All struggles while he was on dialysis for Saints' Day, to honour the 2km distance on 30 consecutive days seven years and watched his health memoryA of the deceased father of one while both their parents Patrick Jnr. decline. In those seven years he the group and to raise awareness and Regina Williams were among the received hospital dialysis treatment about the plight of people with organ group of six adults running the 5km three times weekly. First, he received failure and funds for the Irish Kidney distance daily. Patrick Jnr. set up a his treatment in Kilkenny but in his Association. The deceased, Patrick Facebook fundraising page and at the final years as his health deteriorated, Williams Snr., who lived in Gowran, time of going to print had raised over he was transferred to the renal unit in had been a kidney dialysis patient for €1,250 for the IKA with an additional Waterford. I think he held on to life seven years, before passing away €150 kindly donated by his employer. for as long as he could for the sake of three years ago on 30th October Patrick Jnr., Regina and four other my mother but especially for his eight 2017. men and women pounded the roads grandchildren who adored him.” Supporting the fundraising in different locations around the Patrick Jnr. works on a pig farm and challenge also were the late Patrick’s marble county while wearing bright lives in Woodview, Freshford with his two teenage grandchildren, Nicole yellow IKA t-shirts. They shared wife Regina, who works as a carer for and Sarah Williams, from Freshford photos of themselves, their times, and the HSE, and their two teenage who committed to running a shorter routes on their WhatsApp group every daughters Nicole and Sarah.

Sarah and Nicole Williams Catherine Walsh, Nicola Brennan, Lindsay Kavanagh. Missing from photo: Barry Hughes

IKA SUPPORT WINTER 2020 39 Always look on the bright side of life!

lways look on the work as Secretary to the Ann on her wedding day bright side of life Managing Director of might well be the Squash Ireland until the motto through week before she gave birth which Ann lived to our first child, Kate, in herA life. 1978. This was a premature Looking back on her birth due to toxaemia, but a journey with dialysis and further pregnancy was not chronic kidney failure due to contraindicated, and she Glomerular Nephritis there went on to have our second was never a time where she child, Shireen, in 1980. A said, “why me?” and year later it was discovered bemoaned the trials which that there was protein in the kidney failure presented to urine, and this led to a her. It was a motto and an biopsy which diagnosed her attitude to life which served kidney condition. The GP at her well and which gave her the time advised me, as her a lifespan of 35 years on husband, that I could expect dialysis, being the longest her to live for about five survivor in Ireland currently years. and one of the longest Thankfully treatments survivors worldwide. have all advanced since Ann had a healthy those days and she went on childhood and only with to prove that you can still acute recollection could she have a good life and survive remember an incident for 35 years on dialysis. where, on one occasion, she Ann’s initial hospital obviously had a high treatment and temperature and where we commencement on now assume that she haemodialysis was at St. probably had a strep throat, Vincent’s Hospital. While she which may have contributed was there, she got a copy of based treatment. She had for Ann, “Don’t hold your to her glomerular nephritis the Reader’s Digest which her two young girls at home breath. You would not like in later life. We married in spoke of the possibility of and her desire was to be to get what she has!” In 1975 and she continued to peritoneal dialysis, a home- available as much as those days, the exchange of possible to care for them. A peritoneal bags had no goal she set in her mind was ultraviolet cover, so the to get the youngest into peritoneum was wide open Primary school before her to the elements during the then projected demise. exchange and consequently Ann was transferred to a very hygienic environment the Meath Hospital which was desirable. was then pioneering the She was home and life peritoneal approach to began to return to a new dialysis. We converted a normal routine. She had bedroom to a dialysis room, begun dialysis on 22nd and she came home. As an February 1984 and all was aside, she found it going well. When summer humorous to hear her was coming, she was youngest daughter say to offered a break to Butlins her cousin as she went into but on realising that it was Ann and her daughters at the Berlin Wall this room to get something possible to move outside 40 IKA SUPPORT WINTER 2020 family. Her husband can barely boil an By FRED ROUNTREE egg! – Husband of the late Ann Rountree who was 35 years on dialysis Ann had really no time to feel sorry for herself. At no stage through the 35 years did she avail of any home help and never allowed herself fall into the category of the patient. The Wicklow branch of the IKA was formed somewhere in those early days and we met in the Wicklow hospital on a Sunday afternoon. She found this a very supportive contact and looked forward to meeting all the fellow members at each event. She became the Secretary of the branch and remained in this role over many years. two daughters. A highlight of our year was always Ann was very fortunate to get a the St Patrick’s Day parade and each transplant in December 1985. This year we got more adventurous doing took place in Jervis Street Hospital with floats in Bray, Wicklow and Rathdrum. transfer to St. Mary’s in the Phoenix It was all such fun and a new window Park for recovery. It was initially very on life opened up through her successful but within three months it contacts with fellow patients with began to fail. It was not rejection but a kidney disease. Amongst these were recurrence of what occurred with her Bernie and Mark Murphy, Danny own kidney. She received a second Browne, Fergus Bolger, John Lynch, transplant in 1989 but with the same Bert Lynch, Andy O’Callaghan, John disappointing result. She said she felt Byrne and many more. very sorry for the doctors trying to Dialysis also opened many new break the bad news to her, but I don’t doors for Ann. The initiative of remember any tears from her. She was introducing Art in Tallaght Hospital as protecting those around her and just a bit of art therapy to pass the time moving forward. while on dialysis, was a very fruitful Ann holding the Denis Byrne trophy with her daughters At this stage she had to face up to journey for her. Having never lifted a Shireen and Kate at the Shannon Boat Rally the fact that she would not be paintbrush before and indeed being our home, we decided instead to gut a considered for any further transplants reluctant to even sketch something caravan and convert it into a mobile and that her future was with dialysis. instead passing it to me, she found sterile dialysis room. With this facility, However, she embraced this without that she had quite a talent for art and we were able to join the Shannon Boat complaint. Her life at this stage was went on to produce many worthy Rally as we had done on previous involved with meeting all the demands pieces. It encouraged her to join a years. By using two cars we managed that come with a young family. She local art group which proved to be a to move the caravan as the Rally took the girls to swimming, pony great outlet. moved. She was awarded the Denis riding, ballet, piano lessons and Peritoneal dialysis created great Byrne trophy, in recognition of being facilitated many play dates while being flexibility and indeed she subsequently the first participant to have done the busy in her kitchen looking after her performed exchanges in quite random Rally while on dialysis, and an article Fred and Ann upfront at their first appearance at St Patrick's Day parade about her was placed in the Irish Times entitled 'The Bravest Woman on the River'. This proved to be a great boost to her, and she later said that cracking up laughing at the talent competition, she realised there was more to life than dialysis and that she could still enjoy herself. The Irish Kidney Association was in its infancy in those days, but they gave us stickers etc. to put on our caravan promoting organ donation. The following St. Patrick’s Day we made our own float for the parade with a vintage tractor pulling along our caravan, emblazoned with colourful slogans promoting the donor card. It was all quite good fun enjoyed by our IKA SUPPORT WINTER 2020 41 Always look on the Ann received a Silver Badge award from the RNLI bright side of life! contd... places such as the Atlantic with her, succumbed to Hep Drive on Achill Island. C. Haemodialysis also was However, her peritoneum much harder in the early ceased to work effectively days and she invariably had and she eventually had to headaches after dialysis and revert to haemodialysis quite often had to stop the treatment in hospital but car to get sick on her way not before she had visited home or when collecting the the Travenol/Baxter factory kids from school. She chose in Castlebar and given a talk to drive to her hospital to the staff demonstrating treatment, making it possible the effectiveness of their to do the school collection, product as a boost to their as the alternative of sharing work. She had experienced a taxi was not ideal and a number of instances of might keep her late. peritonitis, but all were The development of the treated successfully. bicarbonate monitor as part We had many other of dialysis was another great holidays on the Shannon improvement which made while on haemodialysis. dialysis less of a trial and Ann would travel on her set reduced sickness. There were following medical through Holland and dialysis days to Sligo or back many challenges through the recommendations and was Belgium, camping as we to Dublin or on one years from creating fistulas expert at following her diet went and getting dialysis as occasion to Altnagevlin to caring for the Hickman and restricting fluid intake. arranged en route. We while she was boating on catheter tube, which became Life was still good, and stayed some days in the River Erne. the only option when her she was enjoying bringing Copenhagen, where Ann Dialysis was not without fistula gave up. One issue up her two girls. She joined had been an au pair in her problems. In the early days where she was again school fundraising teens, and we came back Ann’s blood count would fortunate was in relation to committees and actively via East Germany, the Berlin drop to as low as 4 on parathyroids. She underwent engaged with activities Wall having been knocked occasion, and she had to three surgical procedures for within her parish and that year. She was delighted have transfusions every this but still had excessively community centre and over to send a postcard home month. She was being high readings. Around that a number of years took a from Copenhagen with the maintained with a very low- time, a trial drug arrived and stall for Denmark at the message “We arrived. Oh, level haemoglobin with she volunteered for it not International Food Fair. ye of little faith!” consequent low energy knowing if she was getting As her kids were growing Having accomplished levels. One of the magic the real drug or a placebo up, she thought a family trip travel across northern developments for her was but very quickly she realised to Europe might be Europe, she planned the arrival of EPO. This she was on the new potion interesting. With the another holiday. I am not transformed her existence. which sorted out that enormous assistance of her sure if the hospital was Sadly, all the other fellow problem. Ann challenged life nurse in Tallaght Hospital, aware that we were staying patients being transfused but was extremely diligent in she firstly arranged a holiday in a tent. At any rate, with to Copenhagen. Her first what must have involved dialysis was in Cardiff. enormous commitment and Leaving there at 9pm to effort, they arranged about travel across the south of nine different locations England to reach the ferry throughout for her next morning in Dover. She dialysis. At each location we was running a high would find the hospital or temperature, and our car facility where dialysis was was also overheating. Any available. We would then sensible person might have seek out a neighbouring said ‘go home’ but we campsite after our arrival. It travelled on and got a all worked out satisfactorily. second-hand radiator for We travelled through the car, in Dover, in the Brittany, Cognac, St. morning and thankfully by Emilion, Toulouse, Andorra, then her high temperature Perpignan, Marseilles, Nice, Ann – 21 years on dialysis had subsided. We drove up Antibes, Monaco, Mont 42 IKA SUPPORT WINTER 2020 Ann with her grandaughter Jessica in the christening gown she crocheted

Ann celebrating her 70th birthday with her family Blanc, Annecy, Geneva, experience with spectacular Bruges, and Dunkirk. scenery and the sun shone Although we covered like we were on the Med! almost 4,000 miles in three Our children were weeks, we felt dialysis put growing up. My parents on the role of Souvenir night but she woke up with no barriers on our travel. came to live beside us, and Secretary running the local a sore leg the following Another year we joined a Ann cared for both until RNLI shop in Wicklow. Her morning. It turned out to be cruise-in-company with they passed away. Then her time was spent buying in disguised cellulitis. She was three international Cruising mum and sister with Downs stock and she was regularly admitted to hospital there Clubs sailing off the south Syndrome moved in there to be seen pouring through on Thursday night but sadly coast of Ireland. On dialysis and she cared for both of their catalogues. She very passed away by Sunday. She days, Ann drove off to Cork them through challenging much enjoyed this activity, was 70 years old. for her treatment joining us declining years until they and it left no room for her Ann had conquered at our next destination that passed on. She was the to bemoan her own kidney failure and lived a full evening. However, one of Carer not the cared! circumstances. Her life with it for 35 years but our more amusing Both our daughters got contribution to the RNLI was unfortunately cellulitis challenges with dialysis married and each went on recognised by three awards turning to sepsis was to be arose in Norway. My brother to give us three – Excellence in Volunteering, her downfall. had sailed across to grandchildren – Kate had Silver Badge and Gold Ann always remained Stavanger in Norway and two girls and a boy and Badge. positive. Dialysis and we flew out via Shireen had two boys and a Ann enjoyed hosting sickness, though ever Copenhagen to meet him girl. Ann could scarcely large parties in our home present, were not there. It had been his believe she had lived to see and on one occasion had a something she ever focused intention to cruise up the grandchildren and that each barbeque for members of on and as a family neither Fjords between Stavanger daughter had boys and girls. the IKA Dublin East and did we. She had a strong and Bergen. However, Her grandchildren gave her Wicklow branch. She had faith which stood to her despite repeated attempts, much pleasure in those over 70 people for a sit- through the years and she Ann was being told she latter years. She regularly down meal to celebrate her leaves many great memories could not be facilitated in cared for them and enjoyed 60th birthday. and an example to follow. Bergen. This would have knitting for them and made In latter years when our Ann was one in a million rather messed up my a spectacular crocheted children had flown the nest, – a true inspiration! brother’s cruise of a lifetime! christening gown for them. we went to the Canaries for I would like to take this We left Ireland with only Ann was determined not our holidays. We went there opportunity to thank all the Stavanger as a possibility to sit at home when her three times each Winter doctors and nurses and but during our flight the girls grew up. Having seen from 1997. The sun and ancillary staff who cared for hostess came to us with a them rescued by the change of scenery and Ann so well through all the message that when we Lifeboat when sailing with routine were always a years. It was their arrived in Copenhagen, we their father when a strong welcome break. Ann did not committed and dedicated were to phone a certain wind developed, she let her Hickman catheter care that gave Ann the last number. How they knew we decided to join the Lifeboat prevent her swimming in 35 years. I would also add were on that flight I don’t Ladies Guild as the the warm waters there as that she was lucky to live in know, but apparently my fundraising committee was she devised a careful a country which provided brother had made known at that time. She method of covering it up such a good health service representations to the became very involved, with Tegaderm. at some considerable cost, Norwegian embassy who becoming the last As usual, Ann went out but she was worth every arranged to facilitate us in Chairperson of the Wicklow to the Canaries in March penny of it! Bergen. It was a brilliant Ladies Guild. She then took 2019, arriving on a Tuesday IKA SUPPORT WINTER 2020 43 By ROBYN BLACK

FAKE NEWS How to spot misinformation online

hate the term Fake News. But it spreading through the country, as big warned about clicking virus pop-ups seems that even with the end of events like St. Patrick’s Day were and giving out our bank details the Trump presidency, his cancelled and people began to panic online, but now the real danger is Ifavourite (if often misused) phrase buy. I like to think I know better, but misinformation – and we’re willingly is not going anywhere soon; and this when I received that message I sending it on to our friends and year has been the perfect storm for distinctly remember the split second family. fake news to spread as we all look for of fear I felt, because ‘what if’ it was So whether you’re 16 or 60, here information, online, about COVID-19 true? are some tips to help you navigate whilst stuck at home. First came the The simple truth is that the internet whether something is true, false, or pandemic – swiftly followed by the is full of bots, trolls and outright liars. somewhere in between: infodemic. As a famous movie quote says, We all received the WhatsApp “Some men just want to watch the 1. PRESS PAUSE message back in March. You know world burn”. Some people have an If you read something online and it the one – forwarded from someone’s agenda, and some people just enjoy provokes an immediate emotion friend whose husband’s brother is a provoking a reaction. WhatsApp is (anger, fear etc.), it is time to slow Guard and he had been told that the particularly attractive for this – it has down and think carefully. Emotion is army would be patrolling the streets the feel of something personal and the biggest tool people on the by the weekend. There was no intimate; like you’re getting privileged internet use to get a reaction. Always identifiable source, but the message information. When the internet first read the full story, not just the added fuel to the fire of fear, already came into our homes we were headline. Other red flags include posts

44 IKA SUPPORT WINTER 2020 that ask you to share, photos or videos information you get can be very that are shared with no context or personalised and not reflect a fully GLOSSARY source, or if there is a headline that rounded view of the situation. Trolls – People who intentionally doesn’t quite seem to match with the provoke and upset others online. full story. 4. TAKE IT TO THE TOP Bots – Automated computer Look at official publications like software. They mass-share 2. DIG A LITTLE DEEPER newspapers or news websites. If you information much faster than real Think about what the information can’t find it anywhere like this, it is people can – bot controlled social presented to you – ask yourself, was likely it is inaccurate, unreliable or media accounts are a big problem. this created to inform, entertain or dated. This is especially true if it is Influencers – People with lots of persuade? Look at the , tone and something that would be very social media followers who are source to judge how reliable it is. newsworthy! paid to promote products, services Who has written the post? Are they There are a few independent and ideas. qualified, or do they have a verifiable organisations that fact check claims Algorithm – A mathematical set source for their claims? It takes less being made online. You can turn to of rules used to solve a problem. than two minutes to quickly search on them as a final resort, as they may On social media, this means using Google and seek out a more qualified already have published findings on the data about you (your profiles and view. That being said, just because a post you are seeing. behaviours) to deliver content to person is ‘verified’ on social media or Irish fact checkers include you that it ‘thinks’ you will like. has many followers, it does not mean www.thejournal.ie and Verified – This means that a social they are a trustworthy source. In fact, www.factcheckni.org, or you can media platform has, to the best of you can easily purchase thousands of view a glossary of them at their ability, verified that an fake followers! It’s also important to www.reporterslab.org/fact-checking. account does belong to a celebrity, note that so-called ‘influencers’ are paid public figure, company etc. This is to promote things online, and this can 5. TO SHARE OR NOT TO SHARE? done in a couple of ways, include things that aren’t reliable! If you have followed all these steps including submitting photo ID and and still can’t be sure, I would always completing paperwork. On most 3. CONSIDER YOURSELF err on the side of caution. I understand social media platforms, this We all have biases, even if we don’t that everyone loves rumours and gossip appears as a blue tick next to their like to admit them. Ask yourself, does and being ‘in the know’, but the name. this information challenge or match damage the flow of fake news is doing Click-bait – An article or video your views? We are more likely to is untold. Do your research, ask yourself that has a headline or title that believe information that supports our if you really know enough to click does not match the content. It is a own views, even if it is unverifiable. share, and be safe in the knowledge way to drive up engagement, as Social media algorithms are very clever that you are doing more than most to many people will share things and they will deliver recommendations help with one of society’s newest big without reading the full story or to you based on what you read, see issues. watching the full video! and say online already – this means the

We recently hit a huge 30,000 followers on Facebook! Our Digital Media Coordinator Robyn marked the occasion with the biggest balloons available, because we think any reason to be cheerful this year should be grabbed with both hands.

In case you didn’t know, we’re on all the major social media platforms – follow us and say hi!

@IrishKidneyAssociation

@IrishKidneyAs

@IrishKidneyA

IKA SUPPORT WINTER 2020 45 When Christmas drinking makes you feel blue By CAROL MOORE ll the alcohol Christmas adverts I’ve heard good reports on this. If alcohol-free drinks don’t appeal, are appearing on TV. Junk mail is Also launched recently is a lager – make sure to know the strength of your coming in the door, with special Pure Brew from Diageo which has alcohol drink, (known as alcohol Aoffers on Christmas drinks. 0.05% volume. They claim volume). This can range from 2% to Many people don’t know that the “In independent taste tests, over 70 40% depending on the drink. The Health Research Board found the per cent of people were surprised to higher the number the more alcohol majority of Irish people who use alcohol discover that they were trying a non- there is. are drinking in a way that harms them. alcoholic beer after tasting it.” If you must drink alcohol, check Things are changing though with Diageo has also launched an alcohol- what your medication leaflet states on many people realising that, just like free version of Guinness, called alcohol risk. cannabis, alcohol is a psychoactive Guinness 0.0. Hopefully it will be back drug. So more and more people are on the shelves soon. They recently had ALWAYS AVOID BINGE DRINKING beginning to drink low alcohol or to recall the product due to risk of We Irish actually have the second alcohol-free beers. microbiological contamination. highest rate of binge drinking in the Kidney transplant recipients are world. encouraged to have a healthy diet and ALCOHOL-FREE WINES Binge drinking is defined by health to increase their daily fluid intake, while There’s an increasing range of nice experts, such as the World Health taking care to limit their alcohol alcohol-free wines now available. Organisation (WHO), as six or more consumption. For dialysis patients who From Torres Natureo White which standard drinks in one session. This is are on a strict renal diet, with limited has 0.5% ABV to Flight Sauvignon roughly the equivalent of three or more fluid intake, and alcohol consumption Blanc, from Brancott Estate to Selbach- pints of beer or six or more pub not recommended, Christmas can be a Oster Wehlener Sonnenuhr Riesling measures of spirits, or three or more of lonely time as they may be the only Kabinett and G.D.Vajra Moscato d’Asti those little bottles of wines that are 2015 person, among friends and family, not served in pubs. For more information drinking. SPIRITS see https://www2.hse.ie/alcohol/ What is low alcohol and alcohol- Spirits tend to be free? much higher in alcohol It’s actually very confusing as and are best avoided. different labelling regulations apply in However, there is now different countries. In most EU an Irish version of an countries, drinks containing up to 0.5% alcohol-free gin called alcohol are classified as ‘alcohol free’. Silk Tree which is While this may seem strange, when you getting good reviews. know that ripe fruit such as bananas This is available from have a trace of alcohol it makes more high-end off-licences sense. Drinks that contain no alcohol at and supermarkets. all, are called ‘non-alcoholic’ drinks.

KNOW YOUR ALCOHOL We have a selection of low-alcohol ALCOHOL-FREE BEERS STRENGTH Alcohol-free beers have come a long Because of the health drinks to give away to 5 LUCKY READERS way and new beers are launching risks, there is no safe Just answer the following question: regularly. If you’re under pressure to be level of drinking. Binge drinking is drinking more than 3 pints, seen drinking they might be an option. Patients with end stage or six pub standard spirit measures, or three or more I like alcohol-free Erdinger (alkoholfrei) kidney disease will be pub standard little bottles of wine. but it is very gassy so I can never drink aware of restrictions TRUE or FALSE? more than one. around fluid intake and Heineken recently launched the are advised not to drink Text or email your answer, with your name and Heineken 0.0 which has no alcohol and alcohol. address to: 087-6843644 or [email protected]

46 IKA SUPPORT WINTER 2020 Woman pays tribute to nursing staff

By GWEN O’DONOGHUE

Olivia Keane years ago when her kidneys failed and this treatment is keeping her alive now. She found it very difficult at the beginning, when she started receiving treatment, but Maria and the staff at the dialysis unit helped change her outlook through their kindness and compassion and encouraged her to think of it as just a small part of her life that didn't have to define her. She also got to meet other patients in the ward who were on the same health journey as her. Some of them are on transplant waiting lists and some others, like my mother, are not. "So, over time, she made the decision that her three times weekly dialysis treatments were to be considered her 'work days' and now she just gets on with it and enjoys the Ann and Frank Keane with Snowey company of other dialysis patients who have he proud daughter of a dialysis unit in Unit 7 at Merlin become great friends. On her 'days off' which Galway woman who has Park Hospital and to acknowledge are in between her Monday, Wednesday and Tkidney failure, with little the tremendous support and Friday hospital treatments, she unwinds with prospect of an organ transplant, loving care my mother has my dad Frank and their treasured pet, a Bichon paid tribute to her 'inspirational' received from them. Frise, which they fondly call Snowey. Our mother's courage and the nursing My family knows that my family feel fortunate that the hospital is so staff who care for her, as she faces mother is in good hands with close to where they live, as it is only a matter into her third year of long term these dedicated and skilled staff. of a few minutes drive away. COVID-19 is a haemodialysis treatment. She was full of trepidation on her concern for all of us but for dialysis patients, Olivia Keane said, “October first day of dialysis treatment and who are in the very high risk group, it can be 31st, 2020 marked the second its potential for side effects but the worrying. The dialysis staff have worked anniversary of haemodialysis staff showed great empathy and through the pandemic and show up for work treatment for my mother Anne assured that 'her life wasn't with a smile on their face and a kind word for who lives in Oranmore. ending, it was just changing and their patients. They have helped retain a sense Earlier that month I took part in that she could have a really good of normality during times which are far away the VHI's virtual Women's Mini life with dialysis being a small part from normal and they have helped keep Marathon, for the second year in a of it’." anxiety levels at bay. Since lockdown in March row, to pay tribute to my mother Olivia explained, “My mother my father has been driving mam to the for her inspirational bravery and has diabetes and other health hospital for her dialysis treatment and now also to fundraise for the Irish issues that would prevent her from they have a great routine going. The staff at Kidney Association, for their work ever being accepted onto a Unit 7 really do go above and beyond what is in supporting kidney patients and transplant waiting list. Her kidney required of them and my mother and all the their families. I also undertook the function was declining, for a other patients in their care feel very fortunate challenge, to pay tribute to the number of years, prior to her to have such exceptional staff to care for them wonderful nursing staff at the having to commence dialysis two and ease the burden of their illness.”

IKA SUPPORT WINTER 2020 47 BARBER’S DIALIZE CLOTHING A CUT ABOVE THE REST... Kilkenny barber proved to be a cut above the rest when he made national headlines for his ingenious start-up online clothing business which evolved Afrom over three decades of personal experience with challenging health issues. Just three days after being discharged from hospital following a life threatnening sepsis infection, Paddy Cox (33) from Castlecomer, was rewarded with a €15,000 bursary for his business, Dialize Clothing. Paddy had undergone six surgeries in the six week period before his TV debut and making a Lazarus comeback after flatlining during one surgery. Just hours after receiving dialysis treatment, Paddy was presented with Paddy meets Ryan Tubridy on The Late Late Show the Bank of Ireland sponsored bursary on a special RTE Late Late Show which with discreet zipper openings allowing showcased small fledgling businesses By patients to remain fully dressed, stay trying to take flight through the global GWEN O’DONOGHUE warm and retain their dignity with pandemic. easy access for lines and fistulas and Dialize Clothing is a medical brand delivery in January 2021. hidden pockets for medication, urinary of discreet, yet stylish clothing, for Paddy’s triumphant story comes out catheters and insulin pumps. The diabetics and patients undergoing of adversity as he continues to receive Dialize range also includes a treatment dialysis, chemotherapy and all PICC dialysis treatment having experienced backpack and blanket. and IV-line treatments. the disappointment of kidney Paddy’s ambition was encouraged Since his TV appearance, his transplant failure, two bladder by his fiancée and new business business has gone from strength to augmentations, two brushes with partner Rachel Flanagan. He met strength with a huge increase in orders death through sepsis, kidney stones Rachel, a hairdresser, from Garryowen, for his brand and some garments sold and numerous medical procedures. Co Limerick, seven years ago. Their out with orders now being taken for When Paddy appeared on the Late plans to wed have been put on hold Late Show, he won the hearts and as they concentrate on growing their goodwill of the public when he business. described to presenter Ryan Tubridy Paddy’s journey to dialysis began his background story. As a barber and when he was just nine-years-old when a dialysis patient in the high risk group he learned that one of his kidneys had for COVID-19, he suddenly found failed and the function of the other himself out of work in March and kidney was starting to decline. His quickly turned his attention to condition was carefully monitored, developing his clothing business, and he managed to stave off dialysis which was inspired by his own treatment until he was 18-years-old, personal experience, as he identified a but he experienced a few health solution to filling a large gap in the setbacks in-between while attending marketplace. He experienced difficulty secondary school. For three years he in finding something suitable to wear attended Waterford University Hospital on his treatment days. for dialysis treatment which he He created a practical easy solution underwent 3 times a week for 3 hours with comfortable yet fashionable at a time while also honing his skill as Rachel Flanagan, Paddy Cox warm clothing, designed for patients, a barber.

48 IKA SUPPORT WINTER 2020 He was 21-years-old when he underwent a kidney transplant from a deceased organ donor, and this allowed him to continue working in Marble City. He remains grateful to his The proof of the pudding is in the eating… donor for giving him a decade of good health and greatly It has been exciting to see the extremely positive online reaction to improved quality of life. Seven years ago love blossomed Paddy and Rachel’s Dialize clothing line, after recently appearing on when he met the love of his life, his now fiancée Rachel. the Late Late Show. It is proof that there is huge support for the When Paddy returned to dialysis three years ago Rachel had concept and for their initiative in starting up their own business. put herself forward to be an organ donor but, because of We are looking to put the concept to the test so that others on Paddy’s high levels of antibodies, she could not proceed. Two dialysis can make an informed of Paddy’s sisters were also considered to be potential donors decision about the product. We but following screening they were also found to be have bought a number of the unsuitable. Dialize tops and we have seven, Paddy remains on the transplant waiting list for a donor to give away to people on kidney while he juggles between fulfilling orders for his dialysis, willing to become our business and travelling to the dialysis centre in Kilkenny City, reviewers. You will be sent a top by post, along with guidelines three times a week, for his dialysis treatment which takes over for the written review, that you four hours each time. will be required to submit in the Paddy said, “I am absolutely delighted with the positive New Year. response to our business since our TV appearance and the We are looking for honest bursary will really help to develop it. It's nice to know that out and constructive feedback. of my health experience I can now offer other patients Highlight the positives, suggest comfortable and stylish clothing which they can feel good and improvements – let us know confident in wearing, even on non-treatment days. Of course what you think... a transplant would make my life a lot easier but until then I Dialysis comes with many challenges for patients and it is will continue to plan for the future with Rachel in our business always encouraging to see people looking to address any of these and personal life.” issues. It is all the more satisfying when the initiative is coming from Paddy has another project in the pipeline as he plans to someone who is on dialysis and who therefore understands the launch a book called 'Dialysis to Dialize' in 2021 about his challenges. experience as a dialysis patient and it's impact on his If you are interested in becoming one of our reviewers, either email our National Projects Manager ([email protected]) or send emotional and physical well-being as well as bringing his him a text message (087-6843644) with your name, postal address business concept to reality. and size, as well as your dialysis unit. The seven lucky reviewers will To view the Dialize clothing range visit be selected at random. www.dializeclothing.com ? ? ? 1. Top to toe in tailbacks, oh I got red lights on the run ? 2. Good tidings we bring to you and your king 3. Treetops glisten and children listen to hear sleigh bells in the snow 4. Round Yon Virgin Mother and Child 5. This year to save me from tears 6. When you first took my hand on a cold Christmas Eve ? 7. Oh what fun it is to ride in a one horse open sleigh 8. Toys in every store 9. It’s the season of love and understanding 10. You will get a sentimental feeling when you hear voices singing, let’s be jolly 11. ‘Tis the season to be jolly 12. Let Earth receive her king 13. Come and behold him, born the king of angels 14. O night when Christ was born, O night divine 15. In our world of plenty, we can spread a smile of joy

Answers can be found on page: 61

IKA SUPPORT WINTER 2020 49 Donor family sees life from both sides now

n organ donor family before consenting to Thomas's organs from Roundstone By being donated. Five of his organs attended the ‘Circle of GWEN O’DONOGHUE were donated including his heart, ALife’ Garden in Galway lungs, liver and two kidneys. Some which featured as one which happened outside a chip shop, time later the family received a letter of the locations filmed for the Irish while on a night out on December anonymously from the recipient of Kidney Association's 35th Annual 17th, 2013. He started to make a one of his donated kidneys. Service of Remembrance & recovery while in hospital, the Royal Lauren explained, “Our family Thanksgiving. Hospital in Perth, but later took a bad found it very difficult to get answers Lauren Keaney's late brother turn and died. He passed away on around the exact circumstances Thomas became an organ donor at 27th December 2013 with his parents around Thomas’s death but our whole the age of 23 when he suffered a at his bedside very soon after they had family travelled out for the court case, head injury in Perth, Australia where arrived. They had rushed over on a which started in May 2015, and he had been living for over a year. His long flight to Australia, and then although it was difficult to hear the fatal injury was a result of an consulted with Lauren and her siblings circumstances around Thomas’s death unprovoked one punch to the head, back in Ireland, first over a phone call, we were relieved to finally get some answers. The assailant was convicted The late Thomas Keaney and he was sent to prison but was released in May 2020. Our family is serving a life sentence as we remember the loss of Thomas every single day.” Lauren (31) is the oldest in her family and Thomas was the second oldest. Lauren has two other siblings Leeann (26) and Brian (25). They were brought up in Chicago and moved back to Roundstone in Galway after she finished high school. Lauren said that: “Thomas treated his body like a temple, he ate well and enjoyed fitness. He always acted like a big brother to us and looked out for us. We knew he would have been happy with our decision to donated his organs especially as his young cousin Bernard Óg, who lived near to us in Roundstone, had kidney failure.” Lauren now works as a healthcare assistant with Marieann Keaney, the mother of Bernard Óg Keaney (now age 10), who underwent his transplant from a deceased donor when he was six years old and just three years after his cousin Thomas died. Lauren said: “my family knew our

50 IKA SUPPORT WINTER 2020 Photos by ANDREW DOWNES

Michael Prendergast, the late Thomas Keaney and Don Coyne decision to donate was the correct one and we take consolation in seeing how well Bernard Óg is getting on since his transplant. At the time of Thomas's death, Bernard Óg was in renal failure and waiting for a transplant while making the long trips up and down to Dublin three times a week for dialysis treatment. His plight Lauren, Ann and Bernard Óg Keaney was at the forefront of our minds also “Thomas’s name has been inscribed We are grateful that Thomas's when we agreed to the donation. In in the Book of Remembrance, which donation has been acknowledged in times of sadness, as we still grieve the IKA have explained to us is like a this way and to have been part of the Thomas, we are reminded how roll of honour for organ donors. It is Service of Remembrance.” Bernard Óg is now thriving because of an important aspect in the Service of Lauren and Bernard Keaney, his transplant and that Thomas's Remembrance and Thanksgiving, held Bernard Og's father, did an interview legacy means that five other families every year to acknowledge organ on Galway Bay FM to share their are enjoying his gift to them of organ donors who gave the ‘gift of life’ to stories and help highlight the Service donation. others. of Remembrance & Thanksgiving. SUPPORT THE WORK OF THE IKA Yes, I would like to make a regular donation by STANDING ORDER. £ STANDING ORDER REQUEST FORM To: The Manager of (Your bank's name and address) I/We hereby authorise you to set up a Standing Order on my/our account as specified below:

Signed: Date:

Address:

PLEASE CHARGE TO MY / OUR ACCOUNT: Name of Account:

IBAN: Bank Identifier Code - BIC: (These can be found, printed on your bank statement)

My regular Monthly Quarterly Yearly DONATION of Amount €

(Please tick as appropriate) to start on Date: / /

AND CREDIT TO THE FOLLOWING ACCOUNT: Name of account: IRISH KIDNEY ASSOCIATION at Bank of Ireland, College Green, Dublin 2. IBAN NO.: IE06 BOFI 9000 1717 1934 35 BIC NO.: BOFIIE2D

As long as you are a PAYE or self-employed tax payer, when you donate €250 or more in a year (€21 or more per month), the Revenue Commissioners will give Charity Registration the Irish Kidney Association CLG an extra rebate of 45%. For example, if you gave €250 in one year, the IKA would gain an extra €112, at no extra cost to you. No. 20011260 Please post to: THE IRISH KIDNEY ASSOCIATION CLG, DONOR HOUSE, BLOCK 43A, PARKWEST, FREEPOST, DUBLIN, D12 P5V6 (PLEASE DO NOT POST TO YOUR BANK) CHARITY REG. NO. 20011260 THANK YOU FOR YOUR GENEROSITY Anne with her oldest granddaughter Molly

Marathon woman hails taxi drivers for care of her long-term dialysis mam young Wexford woman who ran and do things when you are able. While some dialysis patients her first full marathon in October “Our mam was a legend. She was undergo treatment in their own said she was ‘blown away’ with witty, loyal and the most caring person home, many others can the support she received in raising I've ever known. And even though we struggle to accept the grind and Aover €5,100 in funds for the Irish miss her every single day, we are so happy Kidney Association. She took on the to speak about her, hear stories and laugh forced reality of having to travel 42-kilometre challenge to honour the about good times we shared with the to hospital at least 156 times a memory of her late mother who passed lady we were so lucky to call mammy. Her year for three times weekly away, at the age of 61, on New Year’s grandchildren Molly and Sadie were her haemodialysis treatment. Out of Day 2020, following ten years of dialysis pride and joy and she lived for them. treatment. She also wanted to raise Sadly, she never got to meet her their plight, many patients and awareness about patients who, like her grandchild baby Orla who was born just a their families derive comfort, mother and grandmother who from the positive relationships shared the same hereditary which are built with caring condition, bravely embrace their nursing, medical and hospital fate of life-long dialysis treatment without hope of ever receiving an staff and the valued friendships organ transplant. and shared experiences with Caitriona Graham, a native of other dialysis patients who Ballyoughter, Gorey stated on her come from all walks of life but GoFundMe fundraising page link that she was doing the marathon in share the commonality of organ memory of her late mother Anne failure. The taxi drivers, who and that, “I’m running 42.195 km become all too familiar with the for those that can’t, for those who regular dialysis routine, take on wish they could and, if I’m honest, because I think I can!” a protective and caring role Caitriona was inspired by her which offers reassurance to mother’s resilience and how she families and patients alike as tried to live by her mantra which they become unspoken heroes. she regularly stated to her five children, “life is for living, so get up Brendan, Caitriona, George, Clodagh and David

52 IKA SUPPORT WINTER 2020 By GWEN O’DONOGHUE Caitriona's younger sister Clodagh presented her mum with Caitriona and her mum Sadie (7 months) chocolates and pyjamas in Christmas 2018 61st birthday - 2019 Molly (3)

Caitriona with her niece Sadie

‘Holding Hands’

Caitriona and her mum proudly showing the participant medal few months her health really started would stop at a shop to buy mam a after she passed to decline. It was difficult for us to treat, sometimes it would be at odds away.” helplessly observe. with her renal diet when he’d buy her In 1986 “Then in 2010 her dialysis journey a 99 ice cream which was ‘forbidden Anne received a started when she joined my fruit’ but she really enjoyed it. Willie participant’s medal for running the grandmother, Mary Fortune, on their and Dinny would patiently help her Dublin Women’s Mini Marathon. three times weekly long journeys to get in and out of the taxi and they'd Caitriona explained, “For the last Waterford Regional Hospital for assist her with her wheelchair, which three years, I've ran the VHI Women's dialysis treatment. They shared the she needed in her final few years after Mini Marathon on my mam’s behalf. same taxi for a year until sadly my suffering from two stokes. We'd fundraise together. I'd run the grandmother passed away in “Our whole family owe a huge 10k and then we would hand over all September 2011, after being on debt of gratitude to Willie and Dinny, the money collected to the IKA. The dialysis for two years. as well as to Brenda and the whole IKA provides support, help, advice and “The same taxi drivers, Willie and dialysis medical and nursing team at guidance to renal patients and their Dinny, continued to bring my mother Waterford University Hospital, for families. They helped me understand for her treatment for nine more years taking such good care of my mam, what was happening to my mam and until she also died. Wille was her most and to all her dialysis friends and the assisted us as a family to improve her regular driver while Dinny also drove whole community for their kindness quality of life. her less frequently. Both men were and compassion towards her, and also “After Christmas 2019 mam would such a wonderful support to my to the IKA for its valued support and have been getting ready to finally mother and were like additional advice.” begin home dialysis treatment, which members of our family as they looked Georgina with her mum Anne, when would mean only one trip to after her so well. Many lively she arrived home from New Zealand Waterford Regional Hospital a week conversations and friendly banter on a surprise visit in August 2019 instead of the normal three trips each were reported to have been week, which she had been doing for exchanged between them and my the previous ten years while receiving mum. hospital haemodialysis. “Over the ten years, they spent “Unfortunately, this wasn’t meant more than eight hours every week to be and on January 1st, 2020 our travelling together on the journey mam passed away surrounded by from Gorey to Waterford which took family. about one hour and twenty minutes “From a young age she suffered each way. In the early days, before the from high blood pressure which led to motorway was built, the journey was other health issues including kidney considerably longer for my mother failure. I was sixteen years old when and grandmother. Often times Willie

IKA SUPPORT WINTER 2020 53 DUBLIN NORTH BY PATRICIA MACKENZIE television and RTÉ Radio 1 Extra, on generosity and openness, often absent Sunday 15th November at 11am in our world. brought the donor message to over The ‘gift of life’ therefore must be 64,000 viewers. In the wake of that commemorated in a spirit of openness our branch received considerable and inclusiveness reflecting the spirit feedback, from people who never had of the donation. occasion to attend a Service, and who found it to be a very moving and IN HOSPITAL meaningful experience. Our thoughts are with those who Our grateful thanks to all involved, have to spend Christmas in hospital. Seasons greetings to all Dublin North especially IKA members and staff who Some of us have had this experience members. did so much work. and the realisation that our health is the most valuable gift of all. ZOOMING NEW CHIEF EXECUTIVE OFFICER It puts Christmas in perspective. We decided that if we were to have Our good wishes from the Dublin any communication with our North branch go to our new CEO HOSPITAL STAFF members that Zoom is the only Carol Moore as she experiences her We pay tribute to all hospital staff, option. first Christmas with us. Carol has our who excelled in their dedication and We have had two meetings so far. full support as she works to achieve care in this troubling year. Their The first meeting went very well; the our goals in these testing times. devotion to duty often put at risk their second meeting, due to a technical own health and that of their families, glitch, started late, but was still REST IN PEACE in their care for others. We can only worthwhile. Our deepest sympathy goes to all respond by taking care not to behave We are at present expanding the who have suffered bereavements in a manner that would result in number of members we are inviting to during this difficult period. Some have imposing further risk on these good attend and would welcome additional lost loved ones to COVID-19 or seen people. email addresses from anyone death hastened by the onset of interested in taking part. COVID-19. CHRISTMAS WISHES These meetings are important to us We remember you all as we pause, Our good wishes go, from Dublin as our membership is the bedrock of and light a candle this Christmas. North branch, to all fellow members the Association. and branches. May you stay safe and THE ‘GIFT OF LIFE’ well as we look forward to Christmas SERVICE OF REMEMBRANCE & THANKSGIVING A special mention of our donor and a healthy and hopeful New Year. Our Service of Remembrance & families, whose ‘gift of life’ is Happy Christmas. Thanksgiving, broadcast on RTÉ 1 unconditional and demonstrates a WEXFORD BY MARIE DONLON We would like to thank Caitriona Graham, who completed the virtual Dublin Marathon, in memory of her mother Anne and presented us with a cheque for €5,122. Also many thanks to Patrick Curley Peak Fitness members who took on a full day of marathon distance challenges and covered a distance of over 1500kms. As a result a cheque for €4,069 was presented to the Wexford branch. We would like to wish Lorraine Costello, Patient Support Officer, many years of happy retirement and thank her, on behalf of all the Wexford patients, for her help and support over the years. Sr. Brenda retired recently from the dialysis unit at Waterford Regional Hospital and on behalf of all Wexford patients we wish her a Patrick Curley Peak Fitness presenting cheque for €4,069 long and happy retirement, and thank her for to Wexford Branch Chairman Liam Buttle, all her help and kindness. Please continue to follow us on Facebook – Wexford IKA Branch. We wish all our members, a very happy, safe and peaceful Christmas. LEFT: Caitriona Graham presenting cheque for €5,122 to Liam Buttle.

54 IKA SUPPORT WINTER 2020 LEITRIM BY CATHRIONA CHARLES

Mary Lennon, Charles Beirne, Annetha Kiernan, Cathriona Charles, Frank Heslin

VIRTUAL SERVICE We also wish Lorraine Costello a very The branch was delighted to be asked by happy retirement, she definitely deserves it Rev Linda, who usually takes part in our after so many years of hard work as our Annual Service of Remembrance and Patient Support Officer – she will be missed. Thanksgiving, to be part of a virtual Service which she is putting together for YouTube WELCOME (link will be shared on our Facebook page). The Leitrim branch welcome our new A small group of us met with Rev. Linda CEO Carol Moore. We are looking forward and her husband Steve, in an empty to meeting her (virtually) and to working Church, where we did our gifts procession. with her to enhance our Association. We were delighted to have this chance to honour our donors during this strange time. CHRISTMAS WISHES We would like to wish happy Christmas RETIREMENT WISHES to one and all. This will be a very different We would like to wish Mark Murphy a Christmas, but hopefully, still an enjoyable long, enjoyable retirement after his many one. Stay safe everyone and best wishes for fruitful years as CEO. the New Year. DUBLIN SOUTH BY JOHN SEMPLE

The branch continues to meet for her book ‘From Analysis to Dialysis and all the team for this lovely monthly via Zoom. Members share and Beyond’. You can purchase the spacious facility. their experiences, whether they are book by contacting Donor House who As we say goodbye to Mark on dialysis, transplanted, or caring for will send you a copy for €10 Murphy and Lorraine Costello, we a patient. We are all finding the including post and packaging. would like to thank them both for all pandemic difficult and look forward Remember all proceeds from the their support to the branch and wish to the day when we can all meet books that are sold, this way, go to them an incredibly happy retirement. face-to-face. It was agreed at our last the IKA. We would like to welcome our meeting that we should have a We were all delighted and very new CEO, Carol Moore and schedule of meetings over the next moved by the virtual Service of sympathise with her on the recent few months. Our meetings start at Remembrance and Thanksgiving, that death of her father RIP. We look 7.30pm and will be held on the was broadcast on RTÉ. The whole forward to Carol joining one of our following dates: 13th January, 10th broadcast was a great tribute to the Zoom meetings in the next few February, 10th March and 14th April. IKA and congratulations must go to months. We are very appreciative of the all those involved in the production. Unfortunately, we are unable to support we receive from Donor The many dialysis patients in the hold our annual Christmas party this House. We love to see new members branch are delighted with the new year, however, we look forward to a join our meetings and if you would Renal Unit in Tallaght Hospital. The better 2021. Happy Christmas to all like me to send you the link you can new facility makes life much more our members in Dublin South and a phone me at 086-3416864. comfortable and easier for both happy, peaceful and healthy New Our member Marguerite Sneyd patients and staff alike. Year. continues to receive many accolades Congratulations to Professor Mellotte

IKA SUPPORT WINTER 2020 55 CLARE BY NORETTA CLIFFORD

The Higgins family with the ‘A New Dawn’ CD’s.

GREETINGS CD FUNDRAISER Here we are at the closing weeks of A fantastic family who have 2020 which has certainly had its journeyed the ups and downs of challenges, tougher for some, more illness and kidney transplantation than others but we are all looking share their emotional story, through a forward to 2021 with renewed hope beautiful collection of music and and resilience! poetry, in their CD ‘A New Dawn’. Don’t forget, our support is always Aaron Higgins received a kidney The tracks on the CD are reflections available, so feel free to call or text transplant in January 2017, after of the emotions the Higgins family 087-6243367/087-9392148, email: many, many years of being ill and on endured through their journey – love, [email protected] or message us on dialysis. His wife Reah, was his living fear, hope, sadness, acceptance, relief, Clare IKA facebook page. donor and both them and their two joy, final tranquility and a new dawn. Also we encourage you all to keep boys, Fionn and Stephen, are grateful The CD also aspires to promote up the fundraising initiatives. We urge every day for this life-changing event. validation of all emotions and to anyone with any ideas to create your Reah says: “Our aim is to help provide hope to anyone who finds own online/virtual fundraisers, in order maintain a particular service we themselves on a difficult path. to ensure the IKA vital services can received along the way, which was the COVID-19 has put a stop to public remain for those who require it. We Irish Kidney Association's Renal unveiling and gathering of celebration are very grateful for any support in Support Centre in Beaumont Hospital, and therefore promoting the CD now these trying times. Dublin. The staff and service there is limited and restricted. You may were exceptional and accommodating support this wonderful fundraiser to say the least. The Centre provides however, by contacting us through accommodation for patients and their the Clare IKA Facebook page, or Reah families who are attending the renal directly on 087-4138626. CD’s will department for a variety of reasons. cost €13 each (plus postage, if Not only does it take away the added requested) with a percentage of financial stress of finding somewhere proceeds to the IKA. to stay in Dublin, it is so practical. One can walk over to the hospital, see the BEST WISHES team, get bloods taken or visit Best wishes to IKA Patient Support somebody on the ward and then Officer Lorraine Costello who has return to the centre for a lie-down or recently retired from Donor House, to prepare food. It became a home following 37 years' service to the away from home for us. More Association. Thanks to Lorraine for importantly it is a hive of community her dedication with organising the and chat where one receives support annual IKA Service of Remembrance from those on the same or similar & Thanksgiving. Peggy Eustace, CONGRATULATIONS journey. It was often like therapy itself. Chairperson Clare branch, adds; “I Congratulations to IKA branch Everyone there understood and found Lorraine most helpful when I member Eoin Eustace and Michelle empathised with each other and could served as a member of the Liturgy White who were recently married in validate each other's feelings – the Committee during my time as Clare the Cathedral of St Peter & Paul in positive and the negative.” Board member. She had an in-depth Ennis, pictured above with Eoin's Those of us who have been on this knowledge of the Association, some parents Val and Peggy. Peggy is also transplantation journey would 100% of which she imparted to me. This is the current Clare IKA Chairperson. agree with Reah’s sentiment. something I will always be grateful to 56 IKA SUPPORT WINTER 2020 Lorraine for.” Cyril Kelly, the IKA Finance Manager has also retired. Cyril's great work with the Association goes back to the time of our former CEO Patricia Doherty. Peggy adds: “Many thanks to Cyril for the help and assistance he gave to me as former Clare branch Treasurer and I thank him for his assistance to our present Treasurer Gerry Moran.” The branch wish them both a long, happy and healthy retirement.

SERVICE OF REMEMBRANCE & THANKSGIVING Our branch wish to thank all those involved in the virtual Service of Remembrance & Thanksgiving Service, broadcast on Sunday November 15th. It was truly special. Many of us lit Clare IKA Secretary Noretta Clifford, Niall Coonan, M. Fitzgibbon Contractors Ltd and Peggy Eustace, Chairperson Clare IKA candles, to honour and remember our at the grounds of the Donor Memorial. organ donors and their families. The memorial grounds will encompass SYMPATHY Forever grateful. three themes: We extend our sincere sympathy to Reflection: a place of reflection and our CEO, Carol Moore, on the recent CLARE DONOR MEMORIAL contemplation for all those who have death of her father. We are delighted to be able to been touched by, or support, organ share some wonderful news, also, in donation. CHRISTMAS GREETINGS relation to remembrance and On behalf of the branch we wish all Recognition: where the kind and thanksgiving. The Clare branch Donor our renal patients, transplant generous ‘gift of life’ can be Memorial is now underway. The recipients, their families, the medical recognised. memorial, located in Ennis, will pay and nursing staff of the renal units, tribute to the donors and their families Remembrance: where all donors can branch members and volunteers agus who have made the ‘gift of life’ be remembered with love. ár gcairde go léir san IKA, Nollaig possible; recipients of transplants and We look forward to sharing more in Shona agus an bhliain nua iontach. those waiting for a transplant. due course. Enjoy the festivities. greetings to all of our members for a GALWAY happy Christmas and good wishes for 2021. We hope to be able to return BY PEADAR Ó HICI to our normal monthly meetings, as soon as possible, when life returns to The members of the Galway branch Thanksgiving, which we had planned normal. wish to record our thanks to two in St Nicholas Collegiate Church. That If any of you wish to contact Eoin leaders of the Irish Kidney Association Church is an integral part of the city Madden, our Chairperson, or myself who have just retired, from Donor of Galway celebrating 700 years of Peadar, Secretary, please feel free to House, after years of sterling work for continuous worship this year. The ring us. You will find our numbers on the Association. Mark Murphy, who branch had decided to be part of the leaflet, sent out some months held the role of CEO and Lorraine their celebrations by holding our ago from Merlin Park Hospital, giving Costello who was Patient Support Remembrance Service in the Church, details as to how the Renal Officer. Both of them played a key but as all Churches were closed it did Department planned to function, role in promoting the IKA and its not take place. Hopefully, we will be during lockdown. They also sent you services, both to kidney patients and able to do so next year, 2021. a copy of the Galway branch leaflet. recipients. We wish them a long, Kleiduccio, Libby Maloney's dog At our last branch meeting in happy and fulfilling retirement. passed away in the past months. This February, the management of the Our branch was just about to start dog accompanied Libby over many Anno Santo informed us that the its annual activities, of fundraising, years, dressed in his IKA bib, when Hotel had been taken over by a new permits approved, volunteers she took him with her when she was owner. One of the plans for the Anno recruited when COVID hit Ireland and doing her street collection for IKA. He was to demolish it and rebuild we had to go into lockdown. We was well-known to all members of apartments, so that leaves the branch dared not put at risk, the lives of Galway IKA and the general public. with no fixed abode as at present. everyone, by taking to the streets and We send our sympathy to Libby on When we relocate we will inform supermarkets fundraising. Neither her sad loss. members. were we able to hold our Annual As we near Christmas the Eoin Madden, Ph: 086 6794008 Service of Remembrance and Committee would like to send Peadar Ó hIcí, Ph: 087-6536521

IKA SUPPORT WINTER 2020 57 WATERFORD BY VERA FRISBY

Frances Moynihan, with her granddaughter Aria Rose, accepts a cheque from her sister Noelle Conway, proceeds of Noelle’s Virtual Dublin City Marathon.

Welcome to the Winter edition of SUPPORT. We hope our magazine will brighten your Christmas after what has been a very strange year for us all. It was lovely to meet our new CEO, Carol Moore, virtually, before our UHW. We send Jane every good wish November branch meeting via Zoom. in her new position. Good wishes and Carol met the attending branch much gratitude are extended to all the members and introduced herself to staff at the Dialysis Unit, UHW, who everyone. She answered any questions continue to look after everyone so posed by members and reminded us well throughout the year. Your of the importance of taking care of kindness and support are much ourselves during this strange time. On appreciated. remember, with great sadness, behalf of our Chairman, Ray, and The Home Therapy Unit, UHW has patients and members who have died branch members ‘thank you’ Carol – been completely refurbished (see page during the year. May they rest in we look forward to meeting you in 19). We would like to welcome Mary peace. person during 2021. O’Grady back to the Unit, after being We extend Christmas greetings to We would like to wish Cyril Kelly a off on leave and send our good Sr. Jane and all the staff at the Renal happy and healthy retirement. Cyril wishes. We would also like to extend Dialysis Unit, UHW. ‘Thank you’ for will be greatly missed by all the staff Christmas wishes and gratitude, on the care and support you give all and members of IKA. ‘Thank you’ for behalf of all renal patients, to the staff patients, throughout the year, it is all your help over the years, it is at the Unit. greatly appreciated. greatly appreciated. Noelle Conway from Dungarvan We would also like to say a big We are extremely grateful to all competed in the Dublin City Virtual ‘thank you’ to all our members, their who have contributed to our Marathon on Saturday, October 24th families and friends who helped and Waterford branch, by way of last. Noelle raised the sum of €3,300 supported our branch during the year. fundraising and donations throughout for our branch. ‘Thank you’ Noelle, We wish you a healthy and happy the year. We thank you most sincerely everyone who supported her and Christmas and we wish a happy and for your support. everyone who sponsored the event. healthy Christmas to all our long- Congratulations to Jane Cullen on Your support in raising vital funds for standing active branch members, her appointment as Clinical Nurse our branch is very much appreciated. some of whom are unable to join us Manager of the Renal Dialysis Unit, As the festive season begins, we at our Zoom meetings. You are missed and we hope to see you all in 2021. CARLOW BY PAT MAY We are continuing with our branch meetings via Zoom. Our next virtual On behalf of the Carlow branch I want to wish all our members a meeting will be in January 2021. If happy and healthy Christmas. To those in our branch who have been you would like to join us for our hospitalised this year or who have been ill, we wish you a virtual meetings, please contact speedy recovery. We remember, with sadness, two Frances Moynihan, Ph: 087 2411549 members who passed away during the year – Seamus or email: [email protected] – Malone and Jacqueline Meaney. We are thinking of with your email address and/or their families at this time. telephone number. We look forward to 2021, when we may be able to For all patients, carers and those in meet again, and life returning to some kind of hospital, and their families, a healthy normality. and happy Christmas and a peaceful New Year. 58 IKA SUPPORT WINTER 2020 CORK BY MARY /SALLY NAGLE/SHEENA McDONAGH

Season’s greetings to one and all. We, Sally, Sheena, Mary and Michael would like to take this opportunity to wish all our members, and their families, a very happy and safe Christmas and a very happy New Year. At this time of year we remember our members and friends who are no longer with us and keep them and their families in our thoughts. We thank all the renal staff in our hospitals for the great care they give to all their patients throughout the year and wish them a very happy Christmas. Hopefully 2021 will be a better year for us all and we will be able to the children. We hope you enjoy this working with us as the organisation resume our monthly meetings. While trip down memory lane with these moves into what is both a challenging modern technology is great – you photos. – Mary Hurley and exciting new phase. can’t beat meeting in person. We miss Hopefully, in the not too distant you all. Our first Zoom meeting of ZOOM SUPPORT MEETINGS future, Carol will be able to visit Cork 2021 will take place on Tuesday, We are continuing our very in person, and we will be able to show February 2nd at 8pm. successful Zoom monthly meetings. her around the presently undeveloped Having these meetings via Zoom has Support House, adjacent to CUH. We MEMORIES OF CHRISTMAS PAST proved very successful, and it is lovely might even squeeze in a bit of Cork As we prepare for a Christmas with to meet familiar faces, and to check in hospitality too! a difference we are looking back at with everybody to share how they are Anyone who is interested in joining some of our Christmas gatherings all getting on. in our monthly zoom meetings, just over the years. Unfortunately, as we Our November meeting was held contact the Branch Secretary on 086- are unable to plan any get-together on Tuesday November 3rd. Our guest 2755754, email [email protected] for our members this year, we thought speaker was dietitian Eileen Duff, who Our meetings will continue online it would be nice to take a look back spoke on being prepared, food wise, for the immediate future on the first on some memories. Over the years we in case you have to self-isolate due to Tuesday of each month (excluding held a very successful and enjoyable COVID-19, or are unable to do a January). Hopefully, at some point, the Christmas Dinner in 2015 and regular fresh food shop. She also meetings can resume in person, but it Christmas lunches in 2017 and 2019. spoke about the importance of would be nice to keep up some They were always a great occasion, maintaining a healthy diet and weight, element of online contact, since many with plenty of good food, good combined with some exercise, to help people can’t attend due to distance or company, and plenty of chat and in the prevention of Type 2 diabetes. illness. craic. It is a great opportunity for our At our November meeting, we also – Sheena McDonagh branch members and their families to had the honour of meeting new IKA We congratulate Sally Nagle on her recent don the glad rags and meet up with CEO Carol Moore. Carol joined us to transplant. You can read Sally’s story in the friends old and new. And, of course, say ‘hi’, introduce herself, and let us Spring issue of SUPPORT. there was always a special visitor for know that she is looking forward to

IKA SUPPORT WINTER 2020 59 SLIGO BY BRIAN McHUGH

At the presentation of the cheque at the IKA garden Doorly Park were front Aoife McTernan with Sean Fowley and back: Josephine, Patrick and Sean McTernan unit. “However, because of space around €200 but the generosity of limitations, it was deemed that this is her many friends brought in more not possible,” the letter stated. than ten times that – a grand total of The letter continued: “At a recent €2,100. HSE Hospital Capital meeting, the Aoife said: “I was amazed at the matter of the Dialysis Unit was response, I wish to say a big thanks to discussed, and it was decided to all my friends. Hopefully we can have undertake an initial scoping exercise the party next year.” to facilitate the presentation of a brief Chairman of IKA Sligo Sean Fowley for a proposed capital submission thanked Aoife and Patrick and all who seeking a new Dialysis Unit.” contributed so generously. It said the brief would be Sligo branch Chairman Sean Fowley and Secretary completed by the end of 2020 or early CHRISTMAS PARTY Geraldine McHugh discuss the proposed new dialysis unit in 2021. This year, instead of the annual at the entrance to the hospital grounds. The Chairman of the Sligo IKA Christmas party, IKA Sligo will hold a HSE TAKES FIRST STEPS ON ROAD TO NEW branch, Sean Fowley said: “We see free draw for dialysis patients this SLIGO DIALYSIS UNIT this as significant progress coming month (December). The HSE has accepted that the renal from a position where there wasn’t The draw will be held in the dialysis dialysis unit at Sligo University Hospital even a mention of a new unit in the unit for all patient shifts. There will is not fit for purpose and they are hospital’s 10-year-plan.” also be a draw for the staff of the looking at the feasibility of providing a Branch secretary Geraldine McHugh unit. Thanks to Des Cosgrove of new one. said: “This is a very positive response Cosgrove’s Centra in Maugheraboy for Confirmation of this came in a and we will be in contact with the a special deal on hampers for the letter to Sligo IKA branch in response Minister again in the New Year to draw. to our campaign for a new unit. check on progress.” There will be several other valuable Details of the campaign and the prizes, all sourced and arranged by necessity for the replacement of the AOIFE’S ‘PLAN B’ RAISES €2,100 IKA committee member Eileen Nolan. renal dialysis unit were outlined in the Twins Aoife and Patrick McTernan Eileen’s son James had a kidney autumn edition of SUPPORT. of Dromahair were looking forward to transplant 26 years ago. As part of the campaign the Sligo their joint 21st birthday party which branch secretary wrote to Health was due to take place last month. But, NEW YEAR’S DAY SWIM Minister outlining like all such events this year it could A sponsored New Year’s Day swim will the serious deficiencies of the unit. not go ahead. be held with funds going to IKA Sligo In a letter of reply, a spokesperson However Aoife came up with a Plan branch. The swim, at Lissadell beach for the Minister said the HSE is B. Through her Facebook page she at 2pm, is being organised by branch preparing a brief for a proposed invited donations for the Irish Kidney member and retired nurse Noreen capital submission for a new unit. Association. Keane. All brave souls who wish to They expect this will be completed late It is a charity close to her heart as get 2021 off to a good start while this year or early in 2021. her father Sean has been on dialysis at supporting a good cause, are invited The letter, signed by Miriam Sligo University Hospital for the past to take part. Watch out for more Rooney, Private Secretary to the 18 months. Sean is well-known in details on our Facebook and Twitter Minister, revealed that the HSE had Sligo through his business McTernan pages and in local media nearer to the explored the possibility of installing Carpets at Ballast Quay. event. The swim will be supported by additional dialysis bays in the existing Aoife had been hoping to receive a GoFundMe page. 60 IKA SUPPORT WINTER 2020 SLIGO KILKENNY CONTD... BY ANN O’GRADY

TRANSPLANTS The Kilkenny Branch of the IKA would Gerry Rooney Two Sligo dialysis patients recently like to wish all our patients, carers, Gerry attended many Branch received the ‘gift of life’ with kidney members and their families a very meeting and fundraising events with transplants. happy, peaceful Christmas and New his wife Mary. He will be sadly missed Sligo town native Natasha Maguire Year. Due to the current by us all. Our deepest sympathy to his is looking forward to a better life, unprecedented COVID-19 pandemic wife Mary and family. thanks to her donor, as is another we have been unable to hold Branch Anna Connolly patient who recently received the vital meetings or organise any fundraising Anna was another loyal member of organ. events. A special Christmas greeting the Branch. She also attended many The Sligo branch wishes both to all our patients who received kidney of the group gatherings over the patients good health and happiness. transplants this year. years.

Finally, we welcome new members GOOD WISHES CONDOLENCES and are always grateful to everyone Best wishes to Bridie Nicholson We would like to take this who has contributed to the Kilkenny after her recent surgery. Calry native opportunity, to fondly remember, our branch by way of fundraising or Bridie is a dialysis patient in the Sligo recently deceased members and unit. donations. friends. More recently: If you would like to help our Kilkenny MEETING WITH NEW CEO Branch in anyway. The Sligo branch recently greeted new Irish Kidney Association CEO CONTACTS Carol Moore in a Zoom meeting. John Lacey Ph: 085-1328255 Carol was introduced to all Sligo Anne O’Grady Ph: 087-9232190 members who were impressed by her Bridie Lennon Ph: 085-7051076 enthusiasm for her new role as she Therese Hanrahan Ph: 087-7796428 outlined her vision for the organisation. DUBLIN EAST CHRISTMAS WISHES The Chairman of the Sligo branch, & WICKLOW Sean Fowley, sends Christmas wishes to all renal unit patients, staff, Hello all patients, family, carers and committee members and supporters. friends. May I start by sending “We hope we can have a more The late Betty Brennan condolences to the family and active upcoming year with the return friends of Marie O’Meara, who sadly Elizabeth (Betty) Brennan of our awareness promotion and passed away in November, RIP. Marie Betty was a wonderful and caring fundraising events,” he said. was a lovely lady, who was a person. She worked for many years as member for many years and always a Registered General Nurse in St. came to our Christmas lunch. She Luke’s Hospital Kilkenny. She joined was a very well-travelled and the Kilkenny branch when a family determined person, who once member developed renal disease. She climbed Croagh Patrick with a group held the role of Chairperson, IKA of us from the Irish Kidney Kilkenny branch for many years. Association. She will be sadly missed. Betty was a tremendous organiser We have, alas, no news from our PROVISIONAL DATES FOR and could call on her many friends for Branch at this time, but hopefully we Organ Donor Awareness Week and look forward to some good news of 2021 ORGAN DONOR Church Gate collections. She also a vaccine and getting our freedom AWARENESS WEEK cared for her late husband Billy. Our and safety back in 2021. deepest sympathy to the Brennan and We welcome our new CEO Carol Saturday 27th March – Tynan families – John Lacey, on board and wish her every success Saturday 3rd April, 2021 Chairperson, Kilkenny Branch in her new role. On behalf of Catherine, John and

ANSWERS TO NAME THE CHRISTMAS SONG ON PAGE 49 Joan Fitzgerald myself, we wish you all a very happy Holy Night. 15. Do They Know It’s Christmas. It’s Know They Do 15. Night. Holy Joan was a loyal member of the Christmas and a better New Year!

Halls. 12. Joy to the World. 13. O Come All Ye Faithful. 14. O O 14. Faithful. Ye All Come O 13. World. the to Joy 12. Halls. Kilkenny branch attending many Please keep safe and keep in Everyone. 10. Rockin Around the Christmas Tree. 11. Deck the the Deck 11. Tree. Christmas the Around Rockin 10. Everyone.

Beginning to Look a Lot Like Christmas. 9. Merry Christmas Christmas Merry 9. Christmas. Like Lot a Look to Beginning gatherings of the group over the touch – this is your Branch and your Christmas. 6. Fairy Tale of New York. 7. Jingle Bells. 8. It’s It’s 8. Bells. Jingle 7. York. New of Tale Fairy 6. Christmas. years. We will miss her. Our deepest input is always welcome, and much

Christmas. 3. White Christmas. 4. Silent Night. 5. Last Last 5. Night. Silent 4. Christmas. White 3. Christmas. sympathy to her husband Frank and needed. Best wishes to all.

1. Driving Home for Christmas. 2. We Wish You a Merry Merry a You Wish We 2. Christmas. for Home Driving 1. family. BERNIE DWYER IKA SUPPORT WINTER 2020 61 CAVAN/ BY KARL CRONIN

THE SEAN McCAFFREY FOUNDATION The patients and staff at the Cavan Renal Dialysis Unit were delighted to be presented with two outdoor teak benches, in honour of Sean McCaffrey, by Sean’s brother Kieran McCaffrey and good friend Chris McBride. Sean attended the renal clinic Dr. Kieran Hannan and the staff of the Renal Dialysis Unit at Cavan General Hospital, accepting two new outdoor benches initially, and then the dialysis unit at from Kieran McCaffrey and Chris McBride from the Sean McCaffrey Foundation. Cavan General Hospital over a period to Ireland as a 20-year-old. Coaching couple of years. of 7 years, until he passed away in was always of interest and he began McCaffrey has won a number of 2017. coaching schoolboy teams in his tournaments during his reign He had a remarkable life and a native Monaghan, before being including the U17 Nordic Cup in unique ability to influence all those appointed manager of Monaghan Iceland in August 2005, the U18 that he met, tutored and coached. A United in 1983 when just 23 – the Lisbon Trophy in March 2007 and the commemorative foundation, the Sean youngest ever manager in the League. U19 La Manga tournament in April McCaffrey Foundation, has been set In 1989 McCaffrey founded Oriel 2006. In March 2008 he guided the up in his honour with the specific aims Celtic, a schoolboy club in Monaghan. U17’s to the European Championships. of youth development through the The club quickly developed from one Sean went on to manage Dundalk medium of soccer, animal welfare and team to 18 within a couple of FC in 2012 for a brief period in the the dialysis unit at Cavan General seasons, and went on to win several Airtricity League Premier Division. It Hospital. European competitions, including the was a difficult time for the club but The following is Sean’s biography Holland Cup, the Dana Cup, the Italy current players Chris Shields and John taken from the foundation’s website, Cup and the Marne Trophy, between Mountney were signed by McCaffrey www.seanmccaffreyfoundation.com U16 and U18 level. As a result of the and played a key role in their recent Sean was appointed as Brian Kerr’s contacts he made on his travels, European exploits. successor as manager of the Republic McCaffrey was able to invite the of Ireland U17, U18 and U19 teams in youth teams of clubs like Celtic, CONDOLENCES November 2003, fulfilling a life-long Manchester United and Ajax to play in The Cavan / Monaghan branch of dream to manage Ireland. Monaghan. In 1999, McCaffrey joined the IKA extend our deepest A talented footballer in his youth, the FAI as a Regional Development sympathies to the family and friends McCaffrey (as he was called) spent Officer. Two years later, Brian Kerr and of the late Patsy Thornton from time at Leicester City before returning Noel O’Reilly brought him in to coach Glaslough, Co. Monaghan who with the Republic of Ireland underage passed away in September. Patsy was teams. a regular attendee at our branch LIMERICK When Kerr was appointed senior meetings down through the years and manager in 2003, McCaffrey was the volunteered for all branch activities obvious choice as caretaker manager including Organ Donor Awareness The Limerick and he impressed taking the U19’s Week activities and Church gate Branch would close to qualification for the 2003 collections. Patsy will be fondly like to wish all our European Championship and, after remembered, and sadly missed by all members, families and also earning good results with the his friends in the IKA. friends a very very happy current batch of U19’s, he was given Ar dheis Dé go raibh a anam dílis. Christmas. A peaceful healthy the chance to take over as U19 and and happy New year and U17 manager on a full-time basis. CHRISTMAS WISHES looking forward to meeting up His first full-time year in charge saw We wish all our branch members, with everyone in the new year. Ireland go agonisingly close to the healthcare staff in our renal units qualifying for the European U19 and all our readers a very happy and MADELEINE DONAGHY Championship Finals and that would enjoyable Christmas and the very best typify how they fared for the next for 2021. 62 IKA SUPPORT WINTER 2020 IRISH KIDNEY ASSOCIATION CLG (Company Limited By Guarantee) MEMBERSHIP APPLICATION FORM

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Please return the completed signed form to the Irish Kidney Association CLG, (Freepost), Donor House, Block 43A, Park West, D12, P5V6. There is no subscription charge. Irish Kidney Association CLG, Donor House, Block 43a, Parkwest, Dublin D12 P5V6 Tel: 0818-543639 (KIDNEY) or 01-6205306 | Email: [email protected] | www.ika.ie Renal Support Centre, Beaumont Hospital, Dublin D09 Y5R3 - SEQUESTERED Emergency Mobile Number: 087-4169907 | Email: [email protected] LOCAL BRANCH SECRETARIES

CARLOW DUBLIN EAST KILDARE LONGFORD SLIGO Susan Tobin + WICKLOW Michelle Horan Elaine Heslin Geraldine McHugh 6 Woodgrove Ave, Bernie Dwyer Farishta, Augharickard, Knocknahor, Rathvily, 40 Granville Road, Tonlegee, Athy, Shroid, Longford, Co. Sligo. Co. Carlow Cabinteely, Co. Kildare Co. Longford. Co. Dublin Phone: Phone: Phone: Phone: Phone: 087-6635910 085-7131478 087-9444515 086-8142002 086-1673467

CAVAN/MONAGHAN DUBLIN NORTH KILKENNY LOUTH/MEATH TIPPERARY Karl Cronin Patricia Mackenzie Ann O’Grady Celine Tuite Orla Hogan-Ryan 13 Landsdowne Manor 49 Martello Court, 4 Black Church Sq., Proudstown, Skryne, 17 Hawthorns, Swellan Lower Portmarnock, Inistoige, Tara, Co. Meath Nenagh Co. Cavan Co. Dublin. Co. Kilkenny. Phone: Co. Tipperary. Phone: Phone: Phone: 046-9025585 Phone: 086-8513173 087-9576808 087-9232190 086-1572088 087-2806068

CLARE DUBLIN SOUTH LAOIS MAYO WATERFORD Noretta Clifford Lenny Ryan Sarine Browne Maureen Bourke Frances Moynihan Ballylannidy, 36 Tymonville Grove, Coolglass House, St. Anthony’s, Lackendarra, Ballinamult Shanaway Road, Tallaght, Coolglass, Wolfhill, Carrowcushlaun, (via Clonmel), Ennis, Co. Clare. Dublin 24 Co. Laois. Ballina, Co. Mayo. Co. Waterford Phone Phone: Phone: Phone: Phone: 087-6243367 01-6205306 087-4177731 087-6604133 087-2411549

CORK GALWAY LEITRIM OFFALY WESTMEATH Phone Peadar Ó hIcí Cathriona Charles Leona Mahon Cathy Smyth 086-2755754 Rannoch, Gortfadda, Ballintaggart, The Beeches, Bearna, Mohill, Mountbolus, Coosan, Athlone, Email: Galway Co. Leitrim. Tullamore, Co. Offaly Co. Westmeath. secretarycork.ika Phone: Phone: Email: Phone: @gmail.com 087-6536521 087-9768637 [email protected] 086-8049487

DONEGAL KERRY LIMERICK ROSCOMMON WEXFORD Patricia Callaghan Theresa Looney Shaun Faloon Maura Quigley Dora Kent Finabannes, Inch, Kilcummin, 2 Gort Na Mblath Creevy, Newtown, Ramsgrange, Donegal Town, Killarney, Tulla Road Roscommon, New Ross, Co. Donegal Co. Kerry. Ennis, Co. Clare Co. Roscommon. Co. Wexford. Phone Phone: Phone: Phone: Phone: 086-6073339 087-2059205 087-1948679 086-8969670 086-3745788