Ireland needs a Registry of an individual's decision on organ donation after their death. This would be a valuable resource in clarifying, for the next-of-kin, those Iwho are willing to help others after their demise. The Organ Donor Card is currently the main item in our toolbox and it has served us well. However, a Registry that can be accessed, with your decision on organ donation, is now available in countries across the modern world, but unfortunately not in Ireland. The ability to show a grieving family that their deceased relative had joined such a Registry would be a much stronger position for the Organ Donor Coordinator. The vast majority of families will follow the wishes of the deceased, when known, and a Registry would identify their wish. We would also recommend that individuals, unwilling to donate their organs, would form part of this Registry. There is much work involved in maintaining a good Registry. Making sure your next-of-kin are aware that you have joined the Registry would be a simple process. What we do not need is a Registry of only the people who have said ‘no’ to organ donation. That is what the current Government are advocating. The costs of such a Registry would be a little cheaper but a classic waste of money and a lost opportunity. Organ Donor Awareness Week 2017 is almost upon us. It appears to come around quicker each year! For those of you who are veterans of the campaign, hopefully new patients and family members will join you and share some of the work distributing organ donor cards, whilst offering the sale of 'Forget-Me-Not' merchandise to the public between April 1st-8th. I am delighted and wish to thank Vivienne Traynor, well known by now to you all, who has kindly agreed to extend Contents... her ambassadorial role for this year's campaign. 2 EDITORIAL 4 LIVING DONOR TRANSPLANT COUPLE SOON TO WED 6 ORGAN DONATION AND TRANSPLANTATION 2016 8 LIFE LESSONS LEARNED AFTER 35 YEARS OF RENAL FAILURE FRONT COVER Vivienne Traynor, 10 CENSUS OF RENAL PATIENTS 2016 once again ambassador for the 13 SUNSCREEN IKA’s Organ Donor 14 THOMAS EARL STARZL Awareness Week campaign. 16 THIRD TIME LUCKY FOR JOHN PAUL

2 IKA SUPPORT S PRING 2017 Three quarter of the Association's funding comes However, now it is clear that ‘full’ is when there from the public and so much of our activity, for are not enough staff available in a unit. Burnout is patients, depends on maintaining our funding levels. simmering just below the surface in many places. The HSE is cash strapped and, unfortunately, we are We are delighted that the Tralee Dialysis unit has well down their pecking order. However we are agreed, and is able, to facilitate some holiday dialysis grateful for what we do receive. for us again this year. I expect that the decision on Good news was delivered by David McMahon, of the new Tender for Wexford's Unit will be news the Irish Skin Foundation, concerning sunscreen before the end of the month. How long will the protection for transplanted patients - note details Waterford facility have to still cope with their inside on page 13. overcrowding I am still unsure but it will not be any Two replacement haemodialysis facilities have time in 2017 for holiday haemodialysis for our opened since the last edition of SUPPORT, one in Tramore visitors. Yet again you are still more likely to Beaumont Hospital, which I am looking forward to secure a haemodialysis holiday abroad in Europe, seeing. The other is in Limerick University Hospital including free treatment with an EHIC card, than which, fortunately, I have managed to visit. It is an ever to secure a centre transfer holiday in Ireland. outstanding facility and when I stated that it was Deborah, in Head Office, is the renal holiday expert the best facility I was ever in, people thought I was to contact. exaggerating, I am not! The annual renal census show that on December Almost all the haemodialysis units, in the country, 31st 2016, 2,075 people were receiving dialysis are struggling to employ their proper complement treatment, 60 more than a year ago of which 47 are of nursing staff. Years ago I would have deemed a on haemodialysis - see article on page 10 for more dialysis unit ‘full’ due to the lack of haemodialysis details. stations. May I take this opportunity to wish you all a successful Organ Donor Awareness Week and, hopefully, the weather will be kind to us all in our RISING POSTAL CHARGES efforts. SUPPORT If you would prefer to receive your magazine electronically it is available on our , easy to read website...www.ika.ie in a new format. We will email the link to you, each efer. quarter for each edition, if you would pr Please email: [email protected] if you do choose to magazines in the receive email only SUPPORT future. MARK MURPHY

16 KIDNEY SISTERS 30 SALT – LEAVE IT FOR THE SEA! 17 I DONATED MY SON’S ORGANS – 32 ALTRUISTIC ORGAN DONATION NOW TWO MEN LIVE HEALTHY LIVES 33 MEMBERSHIP FORM 18 ANGER – VIRTUE OR VICE? 34 AROUND THE BRANCHES 20 HAEMODIALYSIS GROUP HOLIDAY 55 BRANCH 21 FIFTY YEARS TOGETHER SECRETARIES 22 21st WORLD TRANSPLANT GAMES 56 RUN FOR 23 SPORTS ROUND-UP A LIFE 24 EXPERIENCES WITH DIALYSIS 26 MARY FLYNN 28 TACKERS

IKA SUPPORT S PRING 2017 3 Ken Byrne and Áine O’Keeffe

Living Donor Transplant Couple Soon to wed

or many people scheduled to take place the and close relationship having “When people January is considered following morning. met under hilarious to be a downer Áine O'Keeffe, a 24 year circumstances. Six years ago month with cold old Kilbeggan, Co. Áine was hunting with a ask me why weather and back to Westmeath native, was local hunt in Rahan Woods Fwork with little money after excited to donate her kidney when a young man with a the Christmas excess. to her fiancé, Ken Byrne, a camera caught her eye. I decided to However, for some the start 33-year-old Rosemount Trying to impress him she of this New Year was to be native. They had been made for a large ditch the long-awaited chance of a together for six years almost hoping to create a truly give Ken one life time! On January 15th, a to the day of their scheduled amazing image. Her seemingly fit and healthy surgery. They work together performance didn’t go so of my kidneys young couple from and live with their two well as she made an abrupt Westmeath eagerly stepped children Keelin and Fía in trip landing face first. Rather through the doors of Rosemount, Co. Westmeath. than let him know she was the answer Beaumont Hospital. It was a The couple are sharing their hurt she shouted to the place they had become very story in support of the Irish handsome photographer much accustomed to over Kidney Association's Organ "Did you catch that?" to is simple. the past few years. But this Donor Awareness Week which he laughed and gave time was different. They which takes place from 1st- her a thumbs up! He had It’s Ken, were both about to undergo 8th April which aims to raise indeed caught the whole their long-awaited living awareness about the plight sequence on camera, which donor kidney transplant of people with organ failure. proudly hangs in their My Ken!” surgeries which were They share a truly unique hallway to this day. 4 IKA SUPPORT S PRING 2017 Being photographers Ken months due to and Áine had always tried to complications. He has been see the beauty in life but for undergoing different types the past few years Ken had of dialysis treatment over been silently suffering. the past 12 years including a Diagnosed with kidney form of home dialysis, then disease when he was only progressing to hospital 17, he learned that he too based haemodialysis which might follow in the involved journeys to footsteps of his father, Beaumont Hospital three Anthony Byrne, and also like times a week for treatment his father, would eventually before eventually returning require dialysis treatment or to home haemodialysis. a kidney transplant. Seeing his father’s health Anthony had a troubled struggles only spurred Ken health history with an on to seek an explanation emergency kidney for what he considered to transplant when he was in be a family curse! Finally in Anthony and Ken Byrne his 30s and shortly after the 2013 their family was tested operation he was and research in America hospitalised for over three revealed that they had a very unique UMOD gene, again. What Áine has done which is a defective protein for me is indescribable. She Keelin, Áine, Fía, Ken in the kidney. Having finally is my queen and I cannot found an answer to their wait to marry her! I have my condition they were still no life back, Áine by my side, closer to finding a cure and our children in tow, a Ken would still require a camera in my hand and a donor kidney. Three years bright future in front of us. previously Áine and Ken So bring it on!" attended a meeting at The couple shared their Beaumont Hospital with transplant success and love Professor Peter Conlon story on Facebook when when Áine volunteered to Ken returned home from go forward for testing to hospital three weeks after donate one of her kidneys Áine. Their post, which was to Ken. shared on their Facebook Áine explained, "When photography business page people ask me why I (Ken Byrne Photography) decided to give Ken one of reached over 30,000 views my kidneys the answer is revealing to the public their simple. It’s Ken, My Ken! I secret battle and raising couldn’t be without him and awareness about organ I couldn’t imagine him being donation. tied to dialysis like so many Áine stated, “You don’t others! I want our children have to be Superman to to have a healthy daddy, save a life, there are heroes one they can play with and all around us. We are all not have to be careful capable of saving others around. I know in my heart and all it takes is to carry he would do the same for an organ donor card and tell me. I did it willingly and he your family your wishes to didn’t have to ask.” be an organ donor so that Despite a few others on transplant complications following the waiting lists might receive transplant surgery in which the ‘gift of life’. Ken’s immune system You only have to walk the required a cocktail of halls of Beaumont Hospital medication the couple made to see people in need of a a speedy recovery. life-saving transplant. Ken says of his Rather than bringing experience, "I haven’t felt your organs with you to this good since I was 16. I your grave you might be can actually think clearly, able to save someone else’s look at life and truly enjoy it life."

IKA SUPPORT S PRING 2017 5 ORGAN DONATION AND TRANSPLANTATION 2016 2015 2014 2013 2012 2011 2010 2009 8 year 8 year Total average Deceased Donors 77 81 63 86 78 93 58 90 626 78.3

Transplantation Kidneys 122 120 112 147 131 165 98 154 1049 131.1 from Deceased Liver 58 61 44 55 50 61 38 64 431 53.9 Donors Heart 15 16 18 11 10 6 3 11 90 11.3 Lungs 35 36 31 32 14 8 4 5 165 20.6 Pancreas 0 0 6 11 1 8 8 9 43 n/a SUB-TOTAL 230 233 211 256 206 248 151 243 1778 222.3

Living kidney donors 50 33 40 38 32 27 23 18 261 32.6 & transplants

All organ transplants TOTAL 280 266 251 294 238 275 174 261 2039 254.9

Living & deceased donor kidney Tx 172 153 152 185 163 192 121 172 1310 163.8 Organ Donation and Transplantation 2016 rgan donation is a relatively rare By waiting list because they received event in Ireland. Of the 30,000 transplants in the UK. 7 of these MARK MURPHY Odeaths per annum fewer than transplants were with Irish living 200 potential organ donors are with the total of 172. donors and 2 were from deceased referred to the procurement service This is the official way to present donors. So in total 181 Irish listed for assessment as actual organ the data because it describes the patients received a kidney transplant donors. 190 referrals from hospitals, activity that occurred in Ireland. last year including a total of 57 Irish with potential organ donors, was a There were 9 further HSE funded living donors being involved. The 9 record in 2016. Irish people who came off our kidney extra transplants form part of the UK In 2016 there were 4 fewer official statistics because they deceased organ donors than in 2015 IRISH LIVING KIDNEY occurred in the UK. That is simply the resulting in just three fewer (230) DONORS (57) way it is. organ transplants. But, when you add It should be further noted that the in the record 50 living donor kidney Utilised in Ireland 50 108 total of heart, lung and liver transplants you see an overall rise of Utilised in UK 7 transplants could be further 19 kidney transplants for the year enhanced if I knew how many DECEASED ORGAN DONORS 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 100 91 93 90 90 88 81 81 86 80 Average 76 78 77 80 70 63 60 58 50

6 IKA SUPPORT S PRING 2017 paediatric heart, lung and liver transplants occurred in the UK for DECEASED DONOR TRANSPLANTS Irish listed patients (but I do not 2009 2010 2011 2012 2013 2014 2015 2016 know). 275 5 of the 7 living donor kidney 256 transplants that occurred in the UK, 248 in Coventry to be precise, were 250 243 233 230 conducted in the UK paired exchange programme (cross over). A willing 225 living donor, whose kidney does not Average 222 match with the person that they wish 200 206 211 to see transplanted, joins with the potential recipient, to go on a listing system in the UK of similar 175 circumstances. If the computer programme creates a matching pair, 150 151 the living donor kidney goes to another person in the system and the 15 per year will be the new norm. 119 liver transplantation is conducted on recipient receives a kidney from a liver transplants in the last 2 years is behalf of the HSE in the UK, as I said stranger, also in the programme. The also quite an achievement by St earlier I do not have the 2016 data. normal is a cross over between Vincent’s Hospital from the level of We recognise the selfless act of couples but a chain of transplants deceased donors available. organ donation that these statistics and donors also occurs with multiple Again, I wish to highlight the reflect, and apologise, in the same pairings. cooperation the Irish Liver Transplant breath, to the grieving donor families LIVING PAIRED EXCHANGE Programme has with the UK. whose gift of life made the statistics PROGRAMME All Irish paediatric heart, lung and possible. Donor Donor ORGAN DONOR STATISTICS Mr Jones Mr Smith (Blood Type A) (Blood Type B) Hospital referrals of potential organ donors to ODTI 190 Referrals not progressed to donation 113 Recipient Recipient Deemed medically unsuitable 75 Ms Jones Ms Smith Consent was not achieved 38 (Blood Type B) (Blood Type A) Consented Organ donors 77 Mr Jones is blood type A and wants Utilised organ donors to donate a kidney to Ms Jones (When at least one organ from an organ donor who is blood type B. Mr & Mrs is removed with the intention of transplanting it) 72 Smith, have opposite circumstances Unutilised organ donors (blood type B donor who wants to (When no organs are removed from an organ donor donate to blood type A recipient. in the procurement operation) 5 The donor kidneys could be exchanged and both groups would CONSENTED ORGAN DONORS (77) undergo a living donor and Type Cause of Death transplant procedure. Heart beating Cerebral bleed 32 (brain death donor) 74 CVA (cerebrovascular accident) / Stroke 7 2 complex patients, on the Irish Hypoxia (oxygen deprivation) 21 kidney transplant waiting list, Non-heart beating (cardiac death donor) 3 Head injury (including road traffic accidents) 17 received a kidney from their Irish donor in a UK specialist transplant Ages Sex Blood Groups centre. Less than 16 2 Male (60%) 46 O 41 As I am writing this report, there 17 – 18 4 Female (40%) 31 A 24 have been no pancreas transplants 19 – 35 15 B 10 conducted since 2014 but all is in 36 – 55 26 AB 2 place and as soon as a suitable donor 56 – 65 21 is secured, the transplants will start in St. Vincent’s Hospital. 66 and older 9 For 4 years in a row, there have been over 30 lung transplants in ORGANS RETRIEVED FROM DECEASED DONORS (72) Ireland, creating the expectation that Organ Retrieved Utilised Exported Imported For Research 30+ is the new norm that is Kidney 128 122 1 0 5 considered outstanding in Liver 58 58 5 7 1 international terms from so few Heart 17 15 2 0 0 donors. Lungs 57 35 2 0 5 49 heart transplants in the last 3 years also creates an expectation that 260 230 10 7 11

IKA SUPPORT S PRING 2017 7 Life lessons learned after 35 YEARS of Renal Failure

ialysis is all consuming, both LESSON 2: Don’t give up the day job! physically and emotionally. We If your health allows, keep Dall know that the side effects working! Despite nearly 21 years on and lifestyle restrictions of dialysis are dialysis, Marie has always continued many, and things others take for to work, and currently works part- granted are just not possible for a time in hospital administration. person on dialysis. Mentally, work has been a blessing As Organ Donor Awareness Week for Marie. It has allowed her to stay approaches, I have reflected on the linked in to normal life, and serves as life lessons we have learned in the a distraction from dialysis. It also By LISA MELLON Mellon household over the last three provides social interactions, and decades living with renal failure as a means that her life doesn’t revolve family, and for those who are also on around dialysis. As I write this, my mother, the dialysis treadmill, I hope some of Unlike her peers, Marie has never these may strike a chord with you. been able to climb the corporate Marie Mellon, is currently in ladder. She is an intelligent and Mayo General Hospital, LESSON 1: Keep calm and carry on! vibrant person, but due to dialysis and receiving her 2,237th In my 30 years, I have been part of her illness her capabilities have been haemodialysis treatment. a lot of renal-related crises. You name restricted. it, we’ve had it. Night-time dashes to Unfortunately, society only sees the Marie has spent over 8,500 hours Beaumont after the transplant call, illness and not the person behind the on haemodialysis, and by this transplant failures, dialysis calamities, illness who have the same desires and August, she will have put in fistula ruptures, emergency ambitions as everybody else, but at ambulances, emergency surgeries, ICU the end of the day, work has been a fourteen years. last rites, peritoneal dialysis in the positive force in Marie’s life. And after strangest of places (!), non-compatible all, dialysis doesn’t pay the bills! Prior to this, she spent seven living donors. Kudos to my Dad, Terry, for keeping calm and collected LESSON 3: On a bad day, pick up the phone years on peritoneal dialysis. throughout all of the above events! In my experience, there is often In between were two failed One thing that I continually admire nothing more therapeutic than a good transplants, and much more. is Marie’s inner strength and ability to rant about a bad day, to someone pick herself up and move on after who cares about you. Some problems every crisis. We deal with things as can’t be solved, but talking them out From being diagnosed with they happen and don’t waste energy can provide relief, often provide a renal failure in her mid-twenties, dwelling on the past, or waiting for laugh, and ultimately makes you feel to just turning sixty (sorry for the next crisis to strike. Life is that you’re not alone in this fight unpredictable, and saving energy for living with renal failure. outing your age, Marie!), life has the day to day battles is energy well I lived in Australia for a while, and continued to bring surprises. spent. even in different time zones, Marie

8 IKA SUPPORT S PRING 2017 and I would still have long debriefs Marie Mellon about the latest dialysis drama. This works both ways – despite being a long-term dialysis patient, Marie is still my mother, and can listen to my problems, even if she happens to be on dialysis at the time.

LESSON 4: Trust the dialysis nurses Marie has been a patient of Mayo General Hospital since 1997, which means I’ve basically grown up with the staff in the renal unit. There have been days when we have been frustrated at the gruelling routine of dialysis, and Marie has been despondent and angry, but she tunnels through. On those days the dialysis nurses are a counsellor, nurse and support system all rolled into one. They have helped keep her alive and sane during the past fourteen years, and we’d be lost without them.

LESSON 5: Appreciate the small things I have just turned 30, and I can’t comprehend what my mother had to cope with at my age. At 30, Marie had to give up a new life in Australia and return home to Ireland, to start a treatment that would continue for the next thirty years. Long-term dialysis limits her life hugely, but every day enjoyed is another victory. Despite not being able to eat that meal or have that drink, and facing dialysis the next morning, Marie is And even if that call never comes, always the life and soul of every family we still have hope for the future. wedding, tearing up the dance floor Without the immense kindness of DIALYSIS IS ALL and belting out Tina Turner until the two donor families, one in 1990 and small hours! one in 1995, life would be very CONSUMING, BOTH different now. “ The Irish Kidney Association has allowed her to enjoy some sense of Mum didn’t think she would see PHYSICALLY AND normality and still appreciate a sixty years of age, and now we are holiday, something we thought looking forward at seventy. According EMOTIONALLY. WE ALL wouldn’t be possible. to the Guinness Book of Records, a With the help of the IKA, she has Croatian man by the name of Muris KNOW THAT THE SIDE travelled to the Dialysis and Transplant Mujčić spent 41 years, 112 days on Games in Slovenia in 2007 (and won dialysis, so we joke that Mum has a medals!), Lourdes, Majorca, Portugal, long way to go yet, and will outlive us EFFECTS AND LIFESTYLE Spain, and closer to home can enjoy a all! weekend in Tralee in the IKA holiday Despite everything we’ve gone RESTRICTIONS OF home. through, we still consider ourselves

very lucky. Life on dialysis isn’t the DIALYSIS ARE MANY, AND LESSON 6: Always stay optimistic ideal solution, but we have made our

Maybe, just maybe, a miracle may peace with our altered normality, and THINGS OTHERS TAKE FOR occur, and lucky transplant number continue to enjoy each day as it three might come along. Mum jokes comes. The overall message is that GRANTED ARE JUST NOT“ that she hasn’t eaten a banana in 30 every day it is just good to put your years, of all the things she would do feet on the floor, a smile on your face POSSIBLE FOR A PERSON after a transplant, the first thing she and make the best of family and would eat after a transplant would be friends. ON DIALYSIS.??????? a banana sandwich! Carpe Diem.

IKA SUPPORT S PRING 2017 9 MAP OF HAEMODIALYSIS UNITS USED BY PATIENTS FROM THE REPUBLIC OF IRELAND AND DIALYSIS PATIENT NUMBERS AS OF 31/12/16

65 Derry

6

46

Newry

70 61 77

78 113 55

Tipperary North 91 49 94 Tipperary South 45 122 81 FMC 152 83 7 169 82 85 96 Sandyford Tallaght 83

10 IKA SUPPORT S PRING 2017 CHRONIC DIALYSIS & TRANSPLANT PATIENTS - 31/12/16 Dialysis Facility HAEMO HOME DIALYSIS TOTAL DIALYSIS TRANSPLANT TOTAL ESKD ADULTS HD HHD PD PATIENTS AT CLINIC PATIENTS Beaumont 152 21 55 228 737 965 Mater 83 8 91 111 202 FMC Northern Cross 81 81 81 Beacon Drogheda 77 77 77 Cavan 70 70 15 85 St. Vincent’s 82 10 92 134 226 Beacon Sandyford 85 85 85 Tallaght Hospital 96 4 36 136 284 420 Beacon Tallaght 83 83 83 Tullamore 113 113 58 171 Cork 169 17 31 217 287 504 Waterford 122 6 18 146 171 317 FMC Kilkenny 49 49 49 Tralee 45 45 63 108 Limerick 91 3 19 113 119 232 FMC Limerick 94 94 94 Galway 78 6 18 102 165 267 Wellstone Galway 55 55 55 Castlebar 61 61 61 122 Letterkenny 65 65 70 135 Sligo 46 46 32 78 Northern Ireland 6 6 6 ADULT TOTALS 1803 57 195 2055 2307 4362 CHILDREN Temple St, Crumlin 7 13 20 72 92 OVERALL TOTALS 1810 57 208 2075 2379 4454

IRISH DIALYSIS PATIENTS - 31/12/16 he National Renal Office (NRO) are generous in their sharing of Patients % Tdata from the annual census of Centre Haemodialysis 1810 87 patients. The real-time computer data system they designed is Home Haemodialysis 57 3 covering almost all the country. I Peritoneal Dialysis 208 10 often give the comparisons with the Total Dialysis Patients: 2075 100 previous year but in most cases it is interesting to note the 2 year differences. There are 172 extra IRISH ESKD PATIENTS - 31/12/16 haemodialysis (HD) patients in the 2 Patients % PMP year. That number represents more people than the biggest HD unit, by Transplanted 2379 53.4 500 patient numbers, in the country Haemodialysis 1810 40.6 380 (Cork 169). There are now 6 centres offering Peritoneal Dialysis 208 4.7 44 home haemodialysis but it seems Home Haemodialysis 57 1.3 12 that only 2, Beaumont and Cork are Total ESKD Patients: 4454 100 936 championing the treatment option having 38 people or 66% of all the PMP = Per Million of Population Population 4,757,976 continued next page © ESKD TREATMENT BY UNIT TYPE – 31/12/16 HD % PD Home Transplanted ESKD HD HSE Hospital Renal Unit (11) 1121 61.9 195 57 2151 3524 HSE Hospital Satellite Unit (3) 152 8.4 156 308 Commercial Satellite Unit (7) 524 29.0 524 Northern Ireland NHS (3) 6 0.3 6 HSE Paediatric Renal Unit (2) 7 0.4 13 72 92 TOTALS 1810 100 208 57 2379 4454

IKA SUPPORT S PRING 2017 11 continued... ONE-YEAR COMPARISONS TREATMENT 2016 2015 % CHANGE PATIENTS HAEMODIALYSIS 1810 1763 +2.7% +47 PERITONEAL DIALYSIS 208 197 +5.6% +11 HOME HAEMODIALYSIS 57 55 +3.6 +2 TRANSPLANT 2379 2314 +2.8% +65 ESKD TOTAL 4454 4329 +2.9% +125 57 patients. It is also interesting that above the imaginary HD patients. line, from Dublin to Galway, there is nowhere that offers With the completion of the new Beaumont and Limerick peritoneal dialysis (PD) locally in the patients’ choice of facilities it is my belief that, after Tallaght Dialysis Unit is treatments. What is going on in this day and age? replaced, all the hospital based facilities have now been PD might be a more practical option in this less upgraded over the last 10 years or so. populated part of Ireland because of the longer journeys for Is it time to consider smaller (4-6 station) HD facilities to patients. Must you have a local PD unit or could you be capture the next phase of growth in areas of longer journey trained centrally for the treatment option to be given to times? West Cork, Roscommon, south Tipperary, Clare, you? I will stand corrected if someone can offer a credible Carlow, Wicklow, Nenagh, etc. answer to me. I remember the argument over 12 years ago about the I am busy arguing in Europe that there is a question to 25 people in the midlands travelling to Dublin and Galway. be asked in certain countries about the patients’ choice of Now Tullamore is the fourth largest HD centre in the treatment options, particulalry about transplantation, but country with 113 patients. If you build HD centres locally, also about PD. the individuals and the GP’s will consider HD as a Does my own backyard have a problem also? treatment option without having to consider the long Certainly not in kidney transplantation. When compared journey times in their decision-making process. with other European countries we stand up high in the fact If dialysis transport costs were more visible to the HSE, that 2,379 of our patients with End Stage Kidney Disease I think they would see the merits of this idea of smaller (ESKD) or 53.4% are transplanted. local HD satellite units. The 7-8 hour dialysis day for some In the last 2 years, commercial satellite units have grown patients could be transformed to a 5 hour day. from 5 to 7. 405 patients to 524, a growth of almost 30% Why not achieve this goal? and they stand now with a similar percentage of 29% of all 5 YEAR COMPARISON ADULT HAEMODIALYSIS BY UNIT TYPE 2016 2011 5 YEAR CHANGE % HSE Hospital Renal Unit (11) 1121 1027 +94 +9% HSE Hospital Satellite Unit (3) 152 133 +19 +14% Commercial Satellite Unit (7) 524 290 +134 +34% Northern Ireland (2) 6 7 -1 – Home Haemodialysis 57 20 +37 +285% TOTAL 1860 1579 +283 +18% NO. OF PATIENTS ON DIALYSIS DECEMBER 2006-2016

2100 2015 2075 2000

1900 1828 1831 1894 1800 1782 1795

1700

No. of Patients 1619 1679 1600 1540 1500 1500 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016

12 IKA SUPPORT S PRING 2017 IN THE NEWS

By DAVID McMAHON SUNSCREEN Irish Skin Foundation (ISF) CAN NOW BE PRESCRIBED FOR RENAL TRANSPLANT

PATIENTS Sunscreen

or the first time, the cost of certain sunscreen products is now being reimbursed, when Fprescribed to those who have had renal (kidney) transplants and to immunosuppressed patients taking a particular medicine. Following a kidney transplant, immunosuppressant medications are prescribed to reduce the body’s ability to reject a transplanted organ. However, these essential medicines of sun protection factors. People who the skin against cancer. also increase the skin’s susceptibility to are immunocompromised are more Sunscreen products are now harmful UV radiation from the sun, likely to develop skin cancers. Sun covered for patients with renal making immunosuppressed patients protection factors, when used as part transplants and who are more vulnerable to skin cancer. of the overall strategy to reduce solar immunosuppressed (i.e. those taking Last year, the ISF called on the HSE radiation, are an important part of azathioprine) under Discretionary to allow doctors to prescribe empowering a person to look after Hardship Arrangements for patients sunscreen for vulnerable patient their own skin health. Prevention is with GMS eligibility, and under the groups, like transplant patients, to always better than cure.” DPS scheme for other patients. Items allow them to offset the high cost of The ISF’s David McMahon said that that are covered are generally SPF 50+ creams essential for protecting their the move was a very positive sign that products. skin. the HSE is willing to look at the Items must be prescribed by a Consultant Dermatologist Dr specific needs of particularly consultant (i.e. written on a Patrick Ormond said, “I am delighted vulnerable patient groups and to find prescription for patients to allow the that immunocompromised patients solutions where high out-of-pocket pharmacy to apply for payment). can now access assistance in the use cost present a barrier to protecting March 2017

IKA SUPPORT S PRING 2017 13 Thomas Earl Starzl The Father of Transplantation

(March 11th, 1926 – March 4th, 2017)

arch 4th, 2017 early renal patients, view’ to a clinical reality. (one week hospitalised in the largest Several years of round- before his 91st renal transplant unit the-clock (dog and pig) birthday)… the worldwide at that time, laboratory and clinical work transplant made him also the real made the ‘impossible’ world woke up founder of renal operation possible...the first toM the sad news about the transplantation, a merit liver transplantation being unexpected, sudden, death often forgotten by the performed on March 1st, of Thomas Earl Starzl. younger generations of 1963, the first successful His initial research and, surgeons and nephrologists! one in July 1967... and the Extract from article by mostly disappointing, clinical Once the surgical procedure being recognised Prof. Em. Jan P Lerut experiences intuitionally led techniques refined and the finally in 1983 at the NIH Starzl Unit Abdominal him to rapidly understand immune rejection of the Consensus Conference as a Transplantation, that the road to successful kidney mastered by using valuable therapy for patients University Hospitals Saint-Luc, liver transplantation the ‘steroids plus with end-stage liver disease. Université Catholique Louvain, necessarily needed to pass azathioprine secret’ and the The early Denver Brussels, Belgium through the (surgically anti-lymphocytic serum experiences related to renal simpler) model of kidney ALG, liver transplantation and liver transplantation transplantation. The detailed evolved within five years were compiled in what I clinical observations of his from a ‘wild science fiction would call ‘the old and new 14 IKA SUPPORT S PRING 2017 testaments’ of and, importantly, also the transplantation medicine. donor families. The textbook ‘Experience The patient was always in Renal Transplantation’ central in his doings, and its companion encompassing thereby all SOCIAL MEDIA ‘Experience in Hepatic cultural, religious, gender Transplantation’, edited and racial boundaries. respectively in 1964 and The core value of his & 1969, an era in which both medical and human types of transplantation behaviour was never remained highly business, but always a COMMUNICATION controversial, give a patient-driven medicine he Irish Kidney Association has been live on detailed, 936 pages long, based on correctness, social media for nearly seven and a half years information about outcome altruism and public trust. and we are just about to hit the milestone of of 74 kidney and 29 liver All who worked with him T23,000 likes on our Facebook page. We work transplantations only, will also remember his really hard to constantly upload fresh and new including six renal and one unlimited memory going material without flooding people’s timelines. It is liver xenografts (!). These from remembrance of first important to keep our presence on our social media books are not only the most names and even blood platforms interesting and it is great to see the IKA frequent cited books in groups (!) of his patients via Facebook page continuing to reach over 100,000 history of medicine but most (un)usual anecdotes to people on a weekly basis. of all they witness for all details about every single It’s very pleasing to see since the last issue of future generations the operative event, being it a SUPPORT the Kildare branch have launched a meaning of honest success or a disaster. Facebook page...please search ‘Kildare IKA Branch’ (triumphs and defeats being He also had a remarkable and give them a ‘like’. It is also great to see more of equally reported!). capacity to keep track of the our branches continue to develop their presence on Needless to say that accomplishments, successes Facebook as it allows them to extend their reach numerous, national and and disappointments of all international, honorary his scholars and mentees on within their local communities and farther afield. degrees (including the ESOT a worldwide scale...it It is full steam ahead again for this years Organ honorary membership), seemed to many of us that Donor Awareness Week as we get ready to put distinctions and awards he wanted to be assured together another media campaign. Last year our social were given to him as a that as many patients as media pages hit record numbers during the Week. We token of appreciation, real possible could (indirectly) reached over 1.3 million, a number we were very admiration for his lifetime take advantage of the right proud of, so we hope to replicate it again this time achievements…he received application of his wisdom, around. Our hashtag for the week on Facebook/ them all but one, the Nobel advice and teaching. twitter will be #Donorweek2017. prize. His concern, already On Thursday, March 9th we celebrated the 12th When looking back at his expressed as early as 1974, World Kidney Day (WKD). WKD is the most widely career and impact on the for the real need of celebrated event focused on kidney health across the development of modern transplant centres and their globe. This year’s theme was “Kidney Disease and medicine – and not to optimal localisation, the Obesity”. We encouraged our followers to show their forget modern life (he was need for adequate training support online – Building on the great success of our ranked no 213 of 1000 men of a sufficient number of WKD campaigns over the last years. and women who shaped transplant surgeons but also Finally, there are so many events the millennium) – it is hard the fear for a superfluity of going on around the county during ODAW, to understand how the transplant surgeons have to if you would like me to share your Nobel prize committee be seen in this context. event on Facebook please get in omitted to recognise such Without any doubt an important service to Thomas Earl Starzl was an touch with me. humanity. exceptional scientist, an JAMES REYNOLDS Besides being a pioneer, a exceptional human, a man E: [email protected] or through our medical genius and a ‘hors pair’ who will be social media pages: legend, Starzl was also a missed greatly by his www.facebook.com/irishkidneyassociation great human, a great beloved wife Joy, his family humanitarian. All who as well as by the worldwide worked with him will transplantation community. remember his unlimited Let the fact that his empathy, respect and achievements will endure in engagement for his lives of countless patients collaborators, from the and in the work of countless lowest to the highest ranked persons he influenced be a level, and, even more so, for comfort to handle his his patients, their families unexpected passing away.

IKA SUPPORT S PRING 2017 15 Third time lucky for JOHN PAUL hen John Paul Jones was 16 years old a virus was detected which attacked his kidneys. He led a typically young life up until he turned 20 when his kidneys failed and he quickly progressed to Wdialysis treatment. Fortunately he had to undergo three times weekly hospital dialysis for just 7 months until a suitable deceased donor kidney transplant came along in June 2000. He is quick to express his gratitude to his deceased donor as he was given 4 years away from dialysis treatment until, once again, his kidney function failed but this time his wait for a transplant was to be much longer – almost twelve and a half years. Several members of John Paul’s family had put themselves forward for assessment at Beaumont Hospital to be living donors but they were deemed incompatible. Undeterred John Paul’s aunt, Tina Fletcher, a mother of two from Roscrea, decided, on the suggestion of medics at Beaumont Hospital, to enter a paired exchange programme in the UK. Paired exchange essentially provides for a pair, which includes an incompatible willing donor and a patient in need of a kidney transplant, whom they have an emotional attachment with (such as a spouse, friend or relative), to be assessed for suitability to swap kidneys with two strangers who are also in the programme. The programme runs over four cycles in the year. Their hopes had been dampened after being called for the first and second cycle but the paired exchange kidney transplant operations could not proceed. It was third time lucky for John Paul and Tina when the third cycle last John Paul and his fiancée Teresa September resulted in a successful paired exchange between them and two strangers, who they were told were from Manchester. The operations took place on the 30th September. The Tipperary man is now looking forward to getting married next year after proposing to Teresa, his teacher girlfriend, in December. They are now making plans for their wedding in June 2018.

reda Kavanagh compares after receiving her successful receiving a kidney transplant in transplant, Freda couldn't believe her FJune 2010 to winning the lottery ears when, from behind the curtain and she shares this joy with someone partition she heard a familiar voice. It she describes as her ‘kidney sister’. was David Nolan, a friend and fellow Sheila Garvey Freda from Ashford, Co. Wicklow villager from Ashford. He was in struck up a unique friendship with conversation with a doctor while surprise to Freda that, like her, David Galway native Sheila Garvey which being prepped to go down to theatre had also been called for a transplant. will endure for life. for a kidney transplant from another In expressing her gratitude for her They met for the first time under deceased donor. It came as an utter life changing transplant Freda said, unusual circumstances at "A life threatening illness makes you Beaumont Hospital when each aware of your own mortality. It of them underwent kidney increases your sense of gratitude for transplants from the same things that, perhaps, you took for deceased donor. They were granted and hadn't appreciated how informed that their deceased precious they were. Being given the donor was a retired teacher. gift of life makes you more conscious Freda and Sheila began of being generous to other people - corresponding (anonymously via not in monetary terms but in helping the transplant coordinator) with the living in whatever small way you the deceased donor's sister. can because someone once did it for While in recovery at Beaumont David Nolan and Freda Kavanagh you."

16 IKA SUPPORT S PRING 2017 I donated my son’s organs – now two men live healthy lives Barry, pictured at brother Keith’s wedding in 2010. Barry was his best – Maureen Shiel man and it was the last family occasion they shared with him hen Barry Shiel was a time, I can hardly remember anything teenager, he was watching at all. I do remember thinking that Wtelevision with his mother Barry was so big and strong and I when an organ donation advert came thought he was going to survive. I on. He expressed an interest in being didn’t think he would die.” a donor and his mother, Maureen, She’s not sure if it was the laughed and said he wouldn’t be Beaumont Hospital bereavement needing to do that anytime soon. counsellor who mentioned organ In February 2011, at the age of 25, donation but she felt it was what she ‘fit, sporty and fun’ Barry was killed in had to do. “I am so pleased that I did a car crash in Galway and Maureen consent to give the organs. It’s a remembered that teenage wish. wonderful thing to do and I have got That memory led to her decision to great consolation from it, knowing Barry Shiel allow Barry to become an organ that part of Barry is out there and he donor when he died, giving the ‘gift has helped two other men live healthy A mother who agreed to allow of life’ to two young men on the lives.” her son's organs to be donated transplant list. Being able to get a letter from the She describes the whole process at donor recipients was particularly says it has been a great the time as a blur and ‘surreal’. important to Maureen. It doesn’t consolation to know he is “You never want to bury a child, of make the loss any easier, she says, but helping others course, and when I look back on that “it helps to know that someone is suffering less because my son could Maureen and Michael Shiel be a donor.” Some of Barry’s organs could not be donated because they were damaged in the crash but both his kidneys were suitable. Maureen is delighted that both donor recipients have been in touch with her to express their gratitude. One man was the same age as one of her other sons and had a child the same age as one of her grandchildren. “They were lovely warm letters and they were so thankful for what we had done. One of the men had planted a tree in his garden in memory of his donor and thinks of him every day. That means so much to me.”

©Reprinted courtesy Irish Times

IKA SUPPORT S PRING 2017 17 Virtue or Vice? f asked the question; do you see wary of. That then is the pattern we anger as a virtue or a vice, how adopt in later life. would you respond? Your Of course little in life is black or answer to this question is white and the reality for most of us is important as your answer shows that while we may feel comfortable how you view anger and how with how we express some of our youI deal with anger, either your own emotions, we may feel uncomfortable or someone else's. With anger, as or reluctant to express others. with other powerful emotions, the It is a useful exercise to think about issue is not that we have them – that the attitude you have inherited is obvious – but with how they find towards anger. You may have appropriate expression. incorporated this without thought. It is therefore opportune to ask yourself HOW DO WE LEARN HOW TO PROCESS AND the question; in what way do I express DEAL WITH OUR ANGER? my anger now? Is it healthy and Like many experiences in life our appropriate? initial learning occurs in our family of origin. As children we observe how WHAT ARE THE CONSEQUENCES FOR US adults – particularly parents – behave IF WE CAN'T FACE OUR ANGER AND By MIKE KELLY and we copy them. During this early SEE IT NEGATIVELY? period we are exposed to a wide If we can't manage to process and range of emotions and their express our anger appropriately this expression. As we get older we has consequences for us. Failure to incorporate these behaviour patterns process and express our anger into our own lives. If we have learned appropriately means we remain how to process and channel our emotionally immature and generate emotions appropriately, then that is unnecessary problems for ourselves. the behaviour pattern we adopt. These find expression both Alternatively, if our experience is that emotionally and sometimes physically. emotions – including anger – are Emotionally we become anxious repressed or not acknowledged, then and experience unhealthy guilt. our learning is that emotions are Physically we can experience something to be feared and to be headaches, stomach problems and

The Irish Kidney Association provides a FREE and confidential counselling service for those on treatment, their families and carers, either through their counsellor, based at Donor House, or through a nationally registered, locally-based counsellor network. If, as a person on treatment, family member or carer, you feel it would be of benefit to you to speak to a counsellor or if you would like a referral to a counsellor in your local area please contact Mike at Donor House.

18 IKA SUPPORT S PRING 2017 sometimes chest pains. Furthermore, experience teaches us that when anger is repressed, it will find a way out, often in inappropriate and uncontrollable ways. One of the ways we combat this is through running scenarios – fuming inwardly, mutterings to ourselves – in our head about what we might have said or done had we allowed our anger to find expression. While this may offer some short-term relief, it should never be considered as a long- term solution.

WHAT ARE SOME OF THE REASONS WE FEAR EXPRESSING OUR ANGER? The primary reason why many of us We are intelligent people. We can indifference, giving the message ‘I find it difficult to express our anger is use this intelligence – taking the time don't care’. our fear we will hurt someone we care to reason and reflect on our anger. If Anger is a powerful emotion that for. We repress rather than express. In our tendency, for example, is to can be used positively or negatively. If fact, if we think about it, sometimes it repress or suppress our anger, take channelled correctly, it enhances our is more appropriate to express anger time to think about it; do I do this all mental, physical and psychological as that shows a level of care and the time or are their certain health and maturity, ensuring concern for the other. circumstances when this occurs and healthier personal relationships and Another reason we fear expression take steps to find another method better communication. is our own sense of insecurity. This is that is more helpful. Using our The goal is to arrive at a point in based on the belief that if we express intelligence will also help us arrive at which we have the tools to express anger then others won't like us. We the conclusion that the anger we feel our anger appropriately. This includes employ an avoidance technique, is doing more damage to us than it is feeling it, revealing it and taking rather than confronting the person, to the person we are angry with. responsibility for it. we talk – usually in a negative way – As an exercise examine how you behind their back. express your anger. Ask yourself; is it FINAL THOUGHTS Finally, people who do not like appropriate? If not, can you discover There is a story about a Native conflict will avoid expressing their why this is so? Has it something to do American grandfather who told his anger. Like their companions who fear with your upbringing, your fear of grandson how he felt about a tragedy not being liked, they resort to a type hurting someone or being hurt by that had befallen him. of character assassination...of course them? Do you fear conflict to such a never heard by the person they are degree that you bury your anger so as angry at! to avoid conflict? If so, then how does it find expression? IF WE VIEW ANGER AS A VICE, IS THERE ANY WAY IN WHICH WE CAN SEE HOW IS ANGER POSITIVE? IT IN A MORE POSITIVE LIGHT? Experience tells us that anger is one There are a number of steps we can of the many emotions we carry He said “I feel as if I have two take which, in time, may help us view through life. When anger is expressed wolves fighting in my heart. One is anger as a more positive emotion. appropriately it may lead to the the vengeful, angry, violent one. The This is the first thing to remember, solution of whatever the problem is in other wolf is the loving, anger is an emotion, a feeling. the first place. A capacity to express compassionate one.” The grandson Accepting it simply as a feeling may anger appropriately is necessary for asked him “which wolf will win the help us differentiate between the maturity, for healthy relationships and fight in your heart granddad?” The feeling and what we do about the to ensure healthy communication. It is grandfather answered “the one I way we feel. If we think about it, also important to recognise that feed.” there are many occasions when we sometimes our anger is a sign of Which ‘wolf’ do you feed? may feel like doing something but we caring for someone. In fact, in many The repressed angry vengeful one don't carry it through. cases, not to be angry could suggest or the healthy mature one?

“Anyone can become angry – that is easy. But to be Mike can be contacted angry with the right person, to the right degree, at at Donor House the right time, for the right purpose, and in the on 01-6205306 right way – this is not easy.” – Aristotle or by email: [email protected]

IKA SUPPORT S PRING 2017 19 Are you interested in a group haemodialysis holiday in Majorca (Mallorca) in September or October?

Diaverum have treatment capacity in this Spanish island.

If you would like to express your interest in joining a group of fellow Irish patients for a weeks’ holiday, please email or phone Deborah in Head Office, 01-6205306, by mid-April. 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) THANK YOU FOR YOUR GENEROSITY Fifty years together

Paul and Rose Prendergast

ubliner Paul Prendergast Being on dialysis is very hard. You celebrated 50 years of make the best of it but it’s not Dmarriage to his wife, Rose, really living well.” by renewing their wedding vows The recent wedding vow recently. renewal was held in a hotel and This ceremony was even better Paul says it was great to have the Being on dialysis than the first, he says, surrounded whole family together. “The first by their 13 children and 16 reception was in Rose’s mammy’s is very hard. grandchildren. However, Paul house and we wouldn’t have been would not have been alive to see able to get as many in. Fifty years the day without the kidney together is a long time and that You make the best of it transplant he received 18 years would definitely not have ago. A fall at the time had happened if I had not received my but it’s not really revealed polycystic kidneys and he kidney transplant. To be here and was on dialysis by the time he was healthy and have all my children 50. and grandchildren around me is a living well. “It was no quality of life. I was very special gift that I am grateful in my 40s and had poor health for every day.” and my children were small and I just could not function very well. ©Reprinted courtesy Irish Times

IKA SUPPORT S PRING 2017 21 21st WORLD TRANSPLANT GAMES This year’s summer World Transplant Games will be held in Malaga, Spain from June 25th – July 2nd. With over 2000 people already registered it looks like this year’s Games will be the biggest World Games ever!

Registrations for the Ireland team are looking good with a nice mix of regulars and newcomers as well as a broad range of ages and abilities. Registration will remain open until April 16th with more details to be found on the Games website: http://wtgmalaga2017.com/en/. Participation is open to transplant recipients who are a minimum of 12 months post-transplant and who meet the basic medical requirements of the World Transplant Games Federation.

There is a broad variety of sports available ranging from the more physical such as athletics, cycling, swimming and racquet sports to the more skill based such as ten-pin bowling, darts and petanque (French boules). With competition organised according to age categories that include the over 70 year olds. There are opportunities open to all.

The Ireland team (Transplant Team Ireland) operates by a sports for all philosophy. We see the ‘Games experience’ as being about so much more than competition. The friendship that is found within the team and the experiences that can be gained from meeting peers from across the globe is extremely uplifting.

If you would like to find out more, contact team manager, Colin White ([email protected]), in Donor House (01 620 5306). Better still, attend one of our sports sessions in the ALSAA Sports Complex, (see schedule elsewhere) and meet fellow transplant recipients who have been there, done that and are going back for more!

22 IKA SUPPORT S PRING 2017 SPORTS PROGRAMME 2017 There’s plenty on offer in 2017 and newcomers are always welcome. Contact Colin White in Donor House ([email protected] / 01 6205306) for more details.

Sunday Apr 23 Sports / Social Session ALSAA Sports Complex Badminton, Swimming Athletics, Bowling Sunday May 21 Team Kit Day ALSAA Sports Complex Handing out team kit to the team Travelling to the World Transplant Games in Malaga Team Briefing Motivational Speaker Team photos (individual/county/sport/team) June 25 – July 2 World Transplant Games Malaga, Spain Registration has opened - Deadline April 16th Contact Colin White for more information July 28 – 31 British Transplant Games North Lanarkshire Registration will open Scotland in early 2017 Contact: Colin White for more information Sunday Aug 27 Family Sports Day ALSAA Sports Complex Sports Hall Track & Field, Swimming Pool, Darts, Bowling, Squash British Transplant Games 2017

manager, Colin White ([email protected]) in Donor House on 01-6205306. When registering, you will register for either the Dublin Adults or Dublin Children’s teams – the teams are based on the location of the transplant units. With over 800 transplant recipients expected to take part in the Games it his year’s British Transplant team and a children’s team to take full promises to be an amazing Games will be held in North part in all events. Registration is experience. Lanarkshire (just outside currently open and participation is It is a great opportunity to meet TGlasgow) from July 27th – open to transplant recipients, of all other transplant recipients – to be 30th. This annual event is so much ages, who pass a medical and get inspired and to inspire. more than a sports competition, it is a sign-off from their consultant. Their children’s sports programme is celebration of the ‘Gift of Life’. You can find out more information particularly good and the peer The organisers of the Games, by checking the Games website; network that it opens to all Transplant Sport, have given us an www.transplantsport.org.uk. participants has the potential to be a open invitation to bring an adults You can also contact team life-long friendship network.

IKA SUPPORT S PRING 2017 23 Experiences with DIALYSIS

Darren, Aoife and baby Iarlaith

little over six years ago I wife, Aoife. Life with kidney failure, starting kidney received my second failure is incredibly difficult dialysis a few days later. I Akidney transplant. It at times, but it's still life, was not some sickly youth, I was an important and life and it needs to be lived, a was studying for a Sports changing time for me. Not realisation that took me Degree in England. I had just because I'd lost a many years to learn. seen my future in health kidney transplant in the I was 20 years old when and fitness or teaching. past. Not because I had an optician sent me to the From a sports and fitness spent 9 years going into hospital. He didn't say why student to kidney failure in Castlebar Hospital on and it came as an enormous a week. Life has a funny dialysis. It was because shock that within a week of way of changing your exactly one month earlier I going into hospital I was direction. had proposed to my now diagnosed with kidney As the years passed and

24 IKA SUPPORT S PRING 2017 Darren speaking at the European Acceptance is such Parliament a key word in dealing with any illness.

I adapted to dialysis, I Association I have spoken started giving talks in at the European Parliament. schools thanks to an Present were Members of initiative started by Parliament, pharmaceutical Westport Lions Club, which and patient representatives. I had recently joined. I went This talk led to more from school to school speeches and I now find telling of my experiences myself speaking part-time and explaining about donor all over Ireland and Europe. cards. The teachers found it It has become a passion greatly helped the kids in to share the positive terms of hearing stories of experiences garnered from overcoming adversity and kidney failure. These positive mental health. experiences, challenging at These talks were like the time, showed me therapy for me. I was lessons you can learn opening up to students in through adversity such as Darren at the Dublin Bay Swim

When you are young with kidney failure and on dialysis the thought of living a normal life, travelling, working or having children never seem possible. But the time on dialysis is where you have the opportunity to think about your illness and your life. It is where you develop resilience and adaptability. When I received my second transplant I realised I was a much stronger person thanks to my time on dialysis. I could get married with confidence. I went back to college doing a Masters in Health Darren with Taoiseach Enda Kenny Promotion with confidence. And with the birth or our ways I never had with resilience, adaptability and being so fit and active first child, Iarlaith, I look to family and friends and the a different viewpoint on removed all the excuses I the future with confidence. result was I became happier life. had carried around for Transplantation works, and more at ease with While on dialysis I years. Winning the 100m but do not forget to learn myself. I had finally competed in the European final at the Dublin Games the lessons that dialysis can accepted myself and my Transplant & Dialysis in 2010 was one of my teach you. illness. Games. The positive greatest experiences and Acceptance is such a key aspects of these games led to some friends jokingly word in dealing with any would fill a 20,000 word referring to me as the Darren can be contacted illness. thesis. Discovering other ‘Fastest sick person in with questions or queries Through the Irish Kidney people with a similar illness Europe!’ @www.darrencawley.com

IKA SUPPORT S PRING 2017 25 Grandmother shaves head for charity ary Flynn, from Drumkeerin in Leitrim, received a kidney Mtransplant 24 years ago. She has been through several health crises in her life including two kidney transplants, colon cancer, two gall bladder surgeries, open heart surgery and surgery to insert a pacemaker. After she had reared her family of 10 children she discovered she had renal disease. Mary received haemodialysis treatment for 3 years prior to receiving a kidney transplant in 1992 which, unfortunately, was not a success. Thankfully, she was called for a second transplant in January 1993 which has allowed her to enjoy a very healthy busy life to this day. She celebrated her 85th birthday last month on February 15th. Mary now lives on her own since her late husband Peter passed away,

twenty two years ago, but she is never Irish Kidney Association and she and short for company with her children her family help with collections for the and 22 grandchildren nearby. organisation around awareness She won ‘Slimmer of the Year’ in campaigns. August 2011 after shedding six and a In September 2016 Mary had her half stone over an 18-month period head shaved with proceeds in excess and has lost another stone since then. of €5,000 going to three charities Mary used to require a walking stick including the IKA. but since she lost weight she finds she She says that her donor is always in is much more mobile and hardly ever the back of her mind and she has needs it. Mass said regularly for the donor. Mary with daughter Ethel She is still an active member of the Mary is pictured above with some of her grandchildren

Melanie, from Slimming World in Drumshambo, Mary’s daughter Orla (middle) who is a nurse in Beaumont Hospital and Mary. Mary is pictured with her ten children and late husband Peter

26 IKA SUPPORT S PRING 2017 NOTICE OF THE IKA

The Annual General Meeting of the Irish Kidney Association CLG will be held in the RED COW MORAN HOTEL DUBLIN, NAAS ROAD, DUBLIN 22, on Saturday July 8th, 2017 at 2.00pm Members can propose Motions and Resolutions for the AGM, which must All SIGNED Proxy Voting Forms must arrive, by post, to Head Office also be seconded by another member. These SIGNED Motions and by noon on JULY 5TH. Resolutions must arrive, by post, at Head Office, by JUNE 7TH. The agenda for the Patient Conference, prior to the AGM, will be By JUNE 14TH, Donor House will send, by post, Notice of the AGM, available in the next SUPPORT magazine. including the Agenda, Accounts, Motions, Resolutions and Proxy Voting Forms to all Branch Officers. These will also be sent electronically to If you need further information you can contact your local members who have given us their email address and will be available branch or Head Office and the Constitution of the Association to all members from the IKA website. is available on www.ika.ie

BANK HOLIDAY MONDAY 5th JUNE 2017 Are you taking part in this year’s VHI Women’s Mini Marathon? Please consider getting sponsored to participate on behalf of the IRISH KIDNEY ASSOCIATION CONTACT [email protected] FOR SPONSOR CARDS, T-SHIRTS, ETC.

Closing date for entries Friday 28th April, 2017 or when maximum number of entries is reached

IKA SUPPORT S PRING 2017 27 By COLIN WHITE

his year’s TACKERS Ski Camp again took place in Anzère, Switzerland from February 4th-11th. This is a fantastic Tannual event organised by inspirational transplant recipient, Liz Schick. TACKERS brings together children from around the world who share the common experience of having received a transplant. The children get to try skiing or snow- boarding and a wonderful variety of activities with their peers. Liz Schick Every year the IKA facilitates 2 or 3 children from Ireland to attend the Camp, with sponsorship from Astellas Pharma. The benefits for the children are more than just a week of fun in the snow. The Camp offers an opportunity to step outside their comfort zone and to bond with peers from across the world and thus form a positive transplant friendship network that may be of support as they grow up.

28 IKA SUPPORT S PRING 2017 Because the Camp is specifically set up for children who are transplant recipients it gives parents the reassurance that they can let their child experience activities that they may feel insecure about in a regular school setting. Every year a number of volunteers support the activities of the Camp. This year was particularly special given that 4 of the volunteers were ex-Campers. As transplant recipients they had attended the Camp when they were younger and this year they were coming back to help ensure that other children got to enjoy the same experiences they did. Their return to the Camp is indicative of the enduring nature of the peer friendships that can form. Bringing 50 children together for such a week does Aimee Louise Fenton, Jack O'Brien and Rebecca Osgood-Daly not just happen. It takes a huge amount of work and the bringing together of many players to make it run smoothly. Liz Schick is the driving force behind it all. She continues to inspire sponsors, her local community, the wider transplant community and volunteers. The involvement of Swisstransplant in supporting this year’s Camp is testament to the esteem in which the Camp is held. Listening to the Children’s stories during the week of the Camp highlights the importance of supporting them through childhood and the transition to adulthood. More and more countries are investing time and resources into the important transition phase from child to adult medical services. Activities such as the TACKERS Ski Camp, the British Transplant Games and the World Transplant Games can help in this process

IKA SUPPORT S PRING 2017 29 LEAVE IT FOR THE SEA!

‘A high salt intake holds alt, or sodium chloride, is needed in It is important not to use salt very small amounts in the body for substitutes such as LoSalt and So-Low, as onto water, increases maintaining water balance, healthy they are very high in potassium. blood pressure and Sblood pressure and healthy muscles and nerves. However, too much salt in Avoid having the following foods as increases thirst making it your kidney diet may lead to increased they contain large quantities of salt: thirst, high blood pressure and cause harder to follow your your body to hold onto too much fluid. I Bacon, sausages, black and white kidney diet and fluid This extra fluid puts extra pressure on puddings, processed meats (corned your heart to pump blood around your beef, salami, pate); restriction’ body, thus the more fluid you retain the I Frozen and takeaway meals, higher your blood pressure will be. convenience foods, meals containing Increased thirst can make it difficult to soy sauce. maintain your fluid restriction. I Smoked fish and fish pastes Even without adding salt to your food, I Tinned vegetables (unless marked 'no you can easily get more than you need added salt') by including processed foods that have a I Tinned and packet soups, casserole high salt content in your kidney diet. It mixes (e.g. Bovril, Oxo, Marmite), can take up to six weeks for your taste stock cubes buds to adjust to having less salt, but I Bottled, canned and packet sauces Article provided by soon you should find that you are and tomato juice enjoying the real flavour of your food. I Crisps, salted biscuits (e.g. Tuc, Ritz) www.irishkidneydiet.ie To reduce your salt intake: and other salted snacks e.g. nuts and subgroup of the Irish Nutrition G Avoid using salt at the table and if popcorn I & Dietetic Institute Renal needed use only a pinch of salt in Avoid salt substitutes. cooking. Interest Group. G Choose fresh www.irishkidneydiet.ie is a patient foods instead of education website covering all aspects processed and of the kidney diet (also called the Renal canned foods. Diet) for people with chronic kidney G Use herbs and disease and their Carers. The aim of the spices instead of website is to help kidney patients and salt in cooking their Carers to understand the kidney and at the table. diet better, to help them to explore new G Check food labels avenues with regard to cooking on a for the kidney diet and to improve the food salt/sodium choices and variety available to them. Check it out to learn more about the content to help kidney (renal) diet! make healthier choices.

30 IKA SUPPORT S PRING 2017 TRY THIS TASTY KIDNEY FRIENDLY RECIPE FROM Annual Service of www.irishkidneydiet.ie REMEMBRANCE LAMB KOFTAS WITH TZATZIKI SAUCE & AND SALAD VEGETABLES THANKSGIVING

SERVES 4 Method: To make the lamb koftas, put all the Ingredients: ingredients into a large bowl and mix 800g / 32oz minced lamb, (your well. Season with freshly ground butcher can assist you with this), black pepper. Shape the mixture into 1 medium onion (150g/6oz), finely 16 balls, each about the size of a golf chopped ball. 2 cloves of crushed garlic Cover the lamb koftas with 1 tbsp of finely chopped fresh clingfilm and place in the fridge to set coriander for 1 hour. 1 tbsp of olive oil Add 1 tbsp of olive oil to a frying WILL TAKE PLACE ON 1 level tsp of freshly ground black pan and place over a medium heat. pepper Brown the lamb koftas on all sides 4 x Pitta Bread Pockets then allow to cook for a further 6-8 SATURDAY minutes. While the lamb is cooking make Tzatziki sauce the tzatziki sauce. Place all the 7th OCTOBER 300mls / 10 fluid ounces sour cream ingredients in a bowl and stir to ½ grated cucumber combine. Allow the sauce to chill in at 1 clove of crushed garlic the fridge prior to serving. 2 tbsp of finely chopped mint Ensure lamb koftas are cooked thoroughly prior to serving. 12.30PM Fresh Salad (per serving) Serve the koftas in pitta bread 3 leaves of lettuce pockets, with the tzatziki sauce and in 2 slices of cucumber fresh salad. 1 slice of tomato Ensure all salad vegetables are CORPUS CHRISTI 1 slice of red onion thoroughly washed prior to serving. CHURCH, Per Portion: This dish provides 3 protein exchanges (allowances) and 2 vegetables HOME FARM ROAD, portions. Check your daily allowances to see if you have enough remaining for this dish DUBLIN 9

IKA SUPPORT S PRING 2017 31 doctor or surgeon in my young head It took a full year to have various but the soldier head led the way for tests and interviews before I was my life. accepted as an altruistic donor and in I served my adopted country and January 2011 I donated a kidney to a retired from military service in 1995. total stranger. I was informed that the Too young to retire I found work as a kidney was given to a 60 year old man Safety Officer with a local firm and from Manchester and that the organ worked there for 12 years. I took early began working immediately upon redundancy and decided to retire implantation. totally from working life although I Initially I was shocked and had educated myself with a university disappointed that my kidney was degree and teacher status. given to a 60 year old man. During my Organ donation was still very year of tests and interviews I had it in uppermost in my mind and I enquired my mind that I was going to give life from my local GP about the possibility to a man or woman who would be on of donating when I was alive. dialysis and would have children of Although all organs are as important their own. I could see that this as each other I was informed that it donation was not only going to give was possible to donate a kidney to a life to one person but it was going to living person on the organ waiting list. give a quality of life back to a whole Because I was Irish I wanted to family. am Eamonn Byrne. I am 68 years donate to an Irish person. I sought Lying in my hospital bed I prayed old and I was born in the Rotunda information from Beaumont Hospital and asked for guidance with my Hospital, Dublin in 1948. My in Dublin but was informed that thoughts. I was guided alright. I Ifamily were originally from the although they do kidney transplants it realised how selfish I had been by my Ballsbridge area in Dublin but moved was from family members to direct self-righteous thought demands. I in 1946 to the new town called Cabra family members or organs from began to realise that no matter who West in the then Dublin suburbs. deceased people. I was told also that the recipient was, man or woman, I schooled in Cabra West and first the United Kingdom had a black or white, it was important to left Ireland in 1965. I returned in 1966 programme for altruistic donations them as someone who wanted a and joined the Irish Army Corps of (living people donating organs to quality of life and to be removed from Signals at Collins Barracks Dublin. living people (strangers)) in addition to the waiting list. I have yet to meet the During my service 1966-1970, I served a similar donation programme as in man in question and I would like to in Cyprus with the United Nations. Ireland. one day. It would be a humbling I returned to England in 1970 and experience for me as I had learned a joined the Royal Engineers and very valuable lesson that donation day. remained with them for 25 years I have taken part in the Give A serving in various theatres around the Kidney (GAK) Campaign - world. Having reached the highest www.giveakidney.org - in the Non-Commissioned rank of Warrant Lying in my hospital bed United Kingdom recently and they Officer Class 1, I was awarded the have just celebrated the 500th British Empire Medal (BEM) by Her I prayed and asked for donation. I am proud to say that I am Majesty, the British Queen. one of the 500. It was during my service in 1977 guidance with my thoughts. It has become extremely important that I saw my older brother suffering to me to make others aware of the from kidney failure. Not being a I was guided alright. possibilities of both living donation match a younger brother of mine was and donating on death. It has become and he donated a kidney to save his I realised how selfish I had important to me to ensure that my brother’s life. It was then that I family are fully aware of my decision became aware of the possibilities of been by my self-righteous to donate all of my remaining organs organ donation and I became upon my demise and, lastly, it is interested in the possibility of thought demands. important that we frequently discuss becoming a donor after my death. donation of organs as a family. We all The first heart transplant by Dr donate blood on a regular basis and Christian Bernard was a fascinating we will continue to do so as long as period for me. I wanted to become a we can. 32 IKA SUPPORT S PRING 2017 IRISH KIDNEY ASSOCIATION CLG (Company Limited By Guarantee) MEMBERSHIP APPLICATION FORM BLOCK CAPITAL LETTERS PLEASE:

Mr. Mrs. Ms. FIRST NAME: INITIAL:

SURNAME:

ADDRESS:

POSTCODE: TEL: MOBILE:

EMAIL:

ARE YOU A KIDNEY PATIENT: IF YES IF NO If yes, please indicate your current patient status. Please update our PRE DIALYSIS RELATIVE OF PATIENT records when/if status changes. HAEMODIALYSIS FRIEND OF PATIENT APD GENERAL INTEREST CAPD TRANSPLANT

HOSPITAL OR DIALYSIS CLINIC YOU ARE ATTENDING:

YOU MUST BE 18 YEARS OF AGE, OR OLDER, TO BECOME A MEMBER OF THE ASSOCIATION

AS A MEMBER YOU WILL AUTOMATICALLY RECEIVE OUR QUARTERLY ‘SUPPORT’ MAGAZINE BY POST, UNLESS THERE IS ALREADY ANOTHER ASSOCIATION MEMBER AT YOUR ADDRESS RECEIVING IT?

I WOULD PREFER TO RECEIVE AN EMAIL LINK TO THE MAGAZINE EACH QUARTER INSTEAD YES

CAN WE CORRESPOND WITH YOU BY EMAIL (if you have an email address), IN PARTICULAR NOTICES RE: ANNUAL GENERAL MEETING OF THE ASSOCIATION AND ANNUAL DIRECTOR’S REPORT, ETC.

YES NO

WOULD YOU LIKE CORRESPONDENCE FROM THE LOCAL BRANCH WITHIN YOUR AREA?

YES NO

WOULD YOU LIKE CORRESPONDENCE FROM THE SPORTS SECTION OF THE IKA?

YES NO TO BECOME A VOTING MEMBER OF THE ASSOCIATION YOU MUST SUBSCRIBE TO THE CONSTITUTION OF THE ASSOCIATION (copy available on request) OR ON THE IKA WEBSITE - www.ika.ie

I SUBSCRIBE TO (sign up to and accept) THE CONSTITUTION OF THE IRISH KIDNEY ASSOCIATION CLG (Company Limited by Guarantee).

SIGNATURE: DATE:

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. SLIGO By GERALDINE JENKINS

SLIGO IKA BRANCH Hello to everyone, and welcome to the Spring issue of SUPPORT.

ORGAN DONOR AWARENESS WEEK Sarah Healy (The Cake Lady) presenting a cheque for €697 to Michael McHugh (Chairman, Sligo IKA) Our selling of the IKA merchandise and distribution of donor cards will be held on Saturday April 8th. Our volunteers will be mainly in O'Connell Street. We will also have a sales point in Supervalu in Ballisadare.

CONGRATULATIONS Congratulations and continued good health to Patrick Cleary from Enniscrone who underwent a kidney Catherine Foley presentsMark Tuohy is presented with the Santa cake transplant in November 2016. I wish also to congratulate Patrick for wife Renee on Valentine’s day. Mark is winning the Top Oil ‘Person of the a loyal volunteer with our branch for Year 2017’. Patrick is a depot the past number of years. Manager of the company's Ballina and DONATIONS Castlebar facilities. He was awarded Our very grateful thanks to the title in recognition of his Moylough Concrete Products for their consistent dedication and hard work donation of €500 in December 2016 ethic at Top Oil, in spite of ongoing and also to Sarah Healy (The Cake personal health changes in his Lady) who made, and raffed a Santa personal life. cake which raised €697. Aine O’Grady and Michael McHugh Congratulations to Mark Tuohy who CONDOLENCES Edward Williams was the lucky winner. Thank you to all a particular interest in medicinal Our branch who bought raffle tickets and plants, of which there are plenty, so extends our sincere supported the IKA. our garden is just perfect for her to condolences to the We also received a €1000 donation look after. Pauline tends to the garden family of Edward in December 2016, from Ger on a regular basis and is doing a Williams from O'Carroll, proprietor of Arrotek in fantastic job. Grangebeg in Skreen Collooney Business park. who passed away on FUNDRAISING EVENTS Christmas Day 2016. GARDEN OF REFLECTION Friday, March 3rd - A coffee Edward was a long serving committee I would like to acknowledge the morning was held in Carraig Donn, member with our branch. Deepest volunteers on our committee who O’Connell Street, Sligo. €340 was condolences also to our committee have taken turns to sweep away the raised. A very big ‘thank you’ to member Stephen Mullen on the leaves and debris in the garden Brenda Keirns (Manager) for her kind passing of his brother John in especially during during the Autumn invitation to host the event, and thank Scotland in January. We also convey months. We have also employed a you to all the customers for their our deepest sympathy to Mark lovely gardener, Pauline, to maintain contributions. Feeney on the passing of his beloved the upkeep of the garden. Pauline has continued on page 36 34 IKA SUPPORT S PRING 2017 SLIGO IKA COFFEE MORNING IN CARRAIG DONN

SLIGO CONTD.

IKA SUPPORT S PRING 2017 35 SLIGO BRANCH LAUNCH OF ORGAN DONOR AWARENESS WEEK

Michael McHugh (Chairman, Sligo IKA) pins the ‘Forget-Me-Not’ flower on Marie Casserly, Mayor of Sligo. Also pictured are Sligo IKA Committee members and Ursuline TY students. Sunday April 2nd – A tractor run will take place, SLIGO CONTD. starting from Oxfield Sports Centre with the return trip to Raughley, €10 entry fee per car or tractor. Saturday April 8th – Fundraising night will be held in The Blue Lagoon. Music by local DJ Kevin Flannery (The Record Room).Tickets are €10 available from The Record Room and will also be available on the door on the night. Finger food and lots of great spot prizes.

ANNUAL GENERAL MEETING (AGM) Our AGM will take place on Tuesday April 18th in The Sligo Park Hotel at 7.30pm. All members are invited to attend. Michael McHugh, Marie Casserley, Luke Kerrigan

(Back row): Sean Fowley, Thomas Fallon, Helen Sproule, Charmaine Button, Bernie Patrick and Helena Cleary with their family. Patrick received a kidney transplant last November McHugh, Patrick Cleary, Eileen Nolan (Front): Marie Fowley, Michael McHugh, Ger Jenkins

36 IKA SUPPORT S PRING 2017 LIMERICK By MADELEINE DONAGHY

All members are presently welcoming Spring with plans for the Limerick branch launch of Organ Donor Awareness Week which took place in the South Court Hotel, Raheen, Limerick on Saturday, March 18th from 10am-12noon. We were delighted to welcome a well-known Limerick female personality as the face of the Limerick branch for organ donation 2017. Celia Holman Lee has agreed to spearhead our launch this Emma O’Neill (right) presents Madeleine Donaghy, Limerick IKA branch, with cheque for €810. year...’thank you Celia!’ And a very will be ‘organ donor awareness day’ on €500 to the branch. big ‘thank you’ to our very popular Campus. The Holy Trinity School, O’Neills Bar in Hospital, Co. 2016 ambassador Jon Kenny. Doon, Co. Limerick, designated Limerick collected all the income The branch is actively encouraging Wednesday, March 22nd as their received from the sale of teas and all members to help out during the ‘organ donor awareness day’. coffees in the bar and made a week. Volunteers are needed, so A darts tournament was held in Tom presentation of €810 to the branch. please contact Mary Downes on 087- Maher’s Inn, Templemore, Co.Tipperary ‘Thank you’ to O’Neills, who are also 9612133 if you can spare any time. on Sunday February 5th. This was organising a unique fundraising The University of Limerick has organised by Myles McMorrow and the initiative for ‘Organ Donor Awareness confirmed that Wednesday April 5th €650 raised on the night was Week’. The ‘Lar O’Neill Memorial presented by Myles to the Limerick Truck and Tractor Run’ will be held branch. The presentation was made in over April 8th and 9th. A music night the Fresenius Unit. ‘Thank you’ to will be held on Saturday’ 8th with Myles and to all who supported the music by Nightfall and a ‘Truck and event. Tractor Run’ on Sunday 9th. Thank you to dialysis patient Mary The cost per entry is €30 with all Sheahan who collected and presented proceeds going to the IKA. WEXFORD By MARIA DONLON

Despite the wind, and at times lashing rain, the Credit Union 5k Night Run was a great success recently. More than 1,300 registered for the Run with 1,170 turning up. The IKA Wexford branch and Wexford Marine Watch benefitted from the Run. Both charities lent their support on the night. Organiser Nicola Gregg said: “She had not worked out how much was raised for the two charities but expected it to be more than €10,000. A big ‘thank you’ to Nicola for all her hard work. We would like to extend our sympathy to the Kloss family on the passing of Gladys recently, RIP. Myles McMorrow presents the cheque for €650 to Susan Tom Cooney received a transplant recently and we wish him all the best for Canon, Limerick Board member, proceeds from darts the future. tournament

IKA SUPPORT S PRING 2017 37 LEITRIM By HELENA O’NEILL

Greetings to all our members - we hope everyone is keeping well?

INAUGURAL CHARITY RUN Kathleen and John McTeigue, with their family, who have been fundraising for the IKA for a number of years, organised a run/walk on December 26th, in aid of the Renal ORGAN DONOR AWARENESS WEEK Support Centre in Beaumont Hospital. Hubert McHugh, the Leitrim Guardian ‘Person The event started at 1pm with of the Year’ attended and launched the Leitrim registration, from 12 noon, at St ODAW campaign. The launch took place on Mary's School House, Newbridge. Tuesday, March 7th in Forde’s Inn, Drumkeeran. Afterwards there were refreshments Despite the very wet and windy weather there and presentation of trophies. was a good turn out of members and friends on This was the first planned annual St the night. Everyone enjoyed the light Stephen's Day event which had a refreshments and home baked scones. great turnout and many of the Hubert has offered his assistance during the participants requested that the route week. Our thanks to Ian Forde who gave us the be longer next time. Kathleen McTeigue (right) presents the use of the premises for the event. cheque to Patricia MacKenzie FUNDRAISING One of our most dedicated and long-serving members, Mary Flynn, presented a cheque to Patricia MacKenzie, Manager of the Support Centre. The cheque was part of the €5,000 raised by Mary who had her head shaved. Other recipients of the funds were the Transplant and Cancer Wards in Beaumont Hospital.

Mary Flynn

38 IKA SUPPORT S PRING 2017 OFFALY By KEVIN GALVIN

Hello from the Offaly branch and a belated happy New Year to you all.

ANNUAL MASS OF REMEMBRANCE, THANKSGIVING AND CHRISTMAS LUNCH We got together to celebrate our Annual Mass of Remembrance, Thanksgiving and Christmas Lunch on Jacinta Condron and Bernard Doheny presenting the FUNDRAISING cheque for €12,000, proceeds from the Tullamore Cycling At this year’s Christmas Mass and December 14th in the Tullamore Court and touring Club fundraiser to Jerome Burke (left). Hotel. Once again we wish to thank lunch Jacinta Condron and Bernard Fr. Joe Gallagher, PP, Tullamore for the Doheny from the Tullamore Cycling Mass and his lovely words. Thanks We were also delighted to have our and Touring Club presented Chairman also to Thomas Kennedy, Portarlington friends join us from other branches: Jerome Burke with a cheque for for the music he provided during the Angela and Martin Kerwin (Laois), €12,000 which they raised from Mass. Our Candle of Remembrance Teddy and June O’Neill (Cork), Eddie proceeds of their ‘Annual Pedal the was lit by brothers Fintan and Joe and Jennifer Flood (Westmeath) and Peaks Pat Colgan Memorial Race’, Clooney, Birr. Fintan received his new Siobhán and George Bates (Donegal). which took place during the Summer kidney from his brother Joe during the Santa Claus also dropped in from his of 2016. We greatly appreciate the year. busy schedule to see the boys and enormous amount of work that was Guests of honour were Cllr. Eddie girls, young and old. involved in the raising of this money Fitzpatrick, Cathaoirleach Offaly Presentations were made, by and are very thankful for it. County Council; Valerie Brady, IKA Chairman Jerome Burke, to the National Chairperson, who was Manager of the Tullamore Court SYMPATHY accompanied by her father James, and Hotel, Ann O’Loughlin; Lil Downey, We would like to extend our sincere Emma Kerwin, 2016 Offaly Rose. The Kinnitty and Jacinta Condron, condolences to Jenny Finlay on the day was greatly attended by dialysis Tullamore Cycling and Touring Club, sad loss of her husband and branch patients, transplant recipients, branch for their help and support to the member Bernard Finlay, Clara. Our members and their families and Branch. sympathies are also extended to his friends along with staff from the The day came to an end with family and friends. Ar dheis De go dialysis unit and their families. dancing to Black Lace. raibh a anam dilis.

Mary Young, Pearl Lawrence, Jerome Burke and Louise Galvin Jimmy Lowry, Jerome Burke and Alice Lowry. IKA SUPPORT S PRING 2017 39 OFFALY CHRISTMAS MASS & LUNCH

GET WELL WISHES UPCOMING EVENTS Get well wishes are extended to March 30th - Offaly branch launch of Organ branch members David Cullina, Liam Donor Awareness Week. Swayne, Eamon O’Meara and Noreen April 1st-8th - Organ Donor Awareness Week. Gleeson who are all unwell at this April 19th - Offaly Branch AGM. time. Our thoughts and prayers are with you and your families.

CONGRATULATIONS Congratulations to branch member Caroline Dolan on the 34th anniversary of her transplant, which she received from a living-related donor.

40 IKA SUPPORT S PRING 2017 IKA SUPPORT S PRING 2017 41 DUBLIN EAST & WICKLOW By BERNIE DWYER

joined by Mark Murphy and his wife this year. Frances (who was, once upon a time, Our Annual General Meeting (AGM) our Branch Secretary). will take place on April 18th in St We have had two meetings since Ann’s Resource Centre, Shankill - December and are now busy preparing please note this is an election year! for the highlight of our year...’Organ This year the World Transplant Donor Awareness Week’. Dunnes Games will take place in Malaga, Spain Stores, Cornelscourt have given us a and we have at least two athletes from bag pack on the first day of ODAW our area, Deirdre Faul, a liver (Saturday 1st April) from 10am-6pm. transplant recipient from Dalkey and Hello to our readers from Dublin We also have various locations around Michael Dwyer, kidney transplant East and Wicklow. Spring has arrived, Bray, Nutgrove and possibly Wicklow recipient from Cabinteely. We will have a bit wet and windy but bringing with Town and Dalkey. more news nearer the time but for it beautiful flowers and birdsong. As always we urgently need now they are training hard and we It feels a long time since our volunteers for ODAW to make it a wish them good luck. Christmas lunch in The Ocean Bar and success and we ask for 2 hours of your, Finally, a very happy Easter to you all Grill in Bray. Once again everyone your family's or friends’ time. and as always we are thinking of our enjoyed the food, fun, raffle and Hopefully, we will have nice weather members who have been ill or have getting to see friends from around for our outdoor volunteers and we not been able to get out and about. the Branch. We were also happy to be look forward to seeing many new faces Hopefully Spring will give you all a lift.

42 IKA SUPPORT S PRING 2017 DUBLIN EAST & WICKLOW CONTD.

Bray One Act Drama Festival One of the big cultural events in Bray every 40th anniversary, and was one of the most year is the Bray One Act Drama Festival, successful ever. The Festival is non-profit and when amateur drama groups from all over has contributed much-needed funds for Wicklow, South Dublin and as far away as many charities over the years. Pictured left (l-r): Wexford present one act plays ranging from The IKA was fortunate to be a Bernie Dwyer, Secretary, East Dublin comedy to tragedy over a period of five days nominated charity this year, and last & Wicklow Branch, John Whelan, in January. month our Branch Chairman, John Whelan, Branch Chairman, Joan Gregg, € Secretary, Bray One Act Drama This year the Festival, which has been was presented with a cheque for 5000 on Festival and Dorothy O’Brien, running every year since 1978, celebrated its behalf of the Association from the Festival. Committee Member.

IKA SUPPORT S PRING 2017 43 DUBLIN NORTH By PATRICIA MACKENZIE

Springtime greetings to all North WORLD KIDNEY DAY Dublin members. We hope you can all On World Kidney Day, March 9th now begin to enjoy the brighter days? we held a fundraising quiz in the To our members in hospital, we Hilton Hotel, Northern Cross which hope you are doing well. proved to be a great success as can be seen from the photos. We received CONGRATULATIONS great support from the business Congratulations to Brian O’Hare on community, families and supporters. receiving that special call the ‘gift of Many thanks are due to Fiona Lavin life’. Special wishes to Brian and and her brilliant team. Catherine of Dublin North branch - we Happy Easter to all. wish you both good health for the future.

‘THANK YOU’ Our thanks to members of Dublin North branch who responded to our letter re Organ Donor Awareness Week. As a result we held a special evening for new collectors on March 6th and were delighted to meet those who came along.

44 IKA SUPPORT S PRING 2017 DUBLIN NORTH CONTD.

TIPPERARY By ORLA HOGAN-RYAN

We hope all are keeping well? We are all busy around the county getting ready for ‘Organ Donor Awareness Week’. There are lots of boxes being organised and we are most grateful to our volunteers who help out during the week. Ned Crowe and Orla Hogan-Ryan attended a function. in Clonmel in February, where they were both presented with a ‘Special Achievement Award’ for taking part in the Transplant Games in Finland in 2016. It was a lovely evening with many other sports people, from around the county, also being presented with awards. Peter Ryan, a paralympian, and his pilot Shaun Hahessy. were also presented. They were both in Rio in 2016 and it was lovely to chat to them on the night.

IKA SUPPORT S PRING 2017 45 CLARE By MICHAEL MESCALL

We appeal to our members, their families and friends to help promote Organ Donor Awareness Week which runs from April 1st-8th. Promotion of the donor card, together with sales of merchandise, will take place at various locations including Ennis, Kilrush, Kilkee, Shannon and Killaloe at Noel Quinn presents a cheque for €4000, proceeds from the recent Teagasc Green Cert Class 2016 Tractor Pull held in Ennis, selected days during the week. to IKA Clare branch members Maureen Organ, Peggy and Val Eustace. Also pictured are class members Fergal Lyons ,Jennifer The Committee of Clare branch of Aherne, Ann Marie Ryan, Derek O’Connor and Carina Roseingrave. the IKA West Clare Walk have Kilrush Creek Marina are but organised a walk/run in Kilrush on the some of the sights to be May Bank Holiday weekend to raise observed on the walking funds for the IKA projects, to benefit route. Refreshments will be both Clare patients and patients available in Teach Ceoil, countrywide. Please note that the Kilrush following the walk. walk will take place on Sunday April The committee is under 30th which is the beginning of the the Chairmanship of Vincent Bank Holiday weekend . O’Halloran. We invite you to The walk will take place along the come to Kilrush on the May same route as last year commencing Bank Holiday and participate at the Square in Kilrush, heading out in the event. Sponsorship on the N67, the Wild Atlantic Way, cards are available from towards Aylevaroo and return to Vincent, 086-0854834; Kilrush via Cappagh on the edge of Peggy Eustace, 087- Kevin Moran, Lissycasey presents Colin White from Donor House with a the broad Atlantic. Splendid scenery 9392148; Geraldine Grace, cheque for €500 proceeds of the DIT Rowing Club Rowathon. with views from afar of the Loop 087-9716814; Carmel McCormack, sympathies to the relatives of the late Head peninsula, the Shannon Estuary 086-1500657 or any committee PJ Daly, Cahercalla and Ann and Kerry, together with local views of member. O’Halloran on the death of her Scattery Island, Hogg Island and The Branch wish to extend its brother Senan Lynch.

Clare branch Chairperson Peggy Eustace (pictured left) paid a visit recently to the ‘Circle of Life’ national Commemorative Garden to honour organ donors in Salthill where she remembered all donors and their families whilst also remembering her son’s donor twenty years on from when he received the precious gift of a kidney transplant The site was inspired by Martina and Denis Goggin who donated their son Eamonn's organs for transplantation and undertook this imaginative and creative project in his memory and that of all organ donors.

46 IKA SUPPORT S PRING 2017 Our Treasurer’s son, Kevin Moran, is a final year student at the Dublin WATERFORD Institute of Technology. Kevin who is Treasurer of the college’s rowing club By VERA FRISBY organised a ‘Rowathon’ on Grafton Street in December last. Through the We would like to wish all our We would like to sincerely thank usage of two training machines members a very happy New Year and John, Bobby Lyons GSK, Colligan members of the public were a pleasant Easter. GAA, Dungarvan and The Athletic challenged to row one hundred Club, Dungarvan, for supporting this meters in the fastest time possible. ORGAN DONOR AWARENESS WEEK event and helping to raise this The idea came from the success of the We will be distributing organ donor magnificent sum of money. O’Donovan brothers in the Olympics. cards, selling the ‘Forget-Me-Not’ We would also like to thank It turned out to be a very successful flowers and other merchandise everyone who took part on the day, all venture and some very respectable throughout Waterford City and who took sponsorship cards and all times were returned. County during this week. We would who sponsored the walkers and € The monies raised totalled 500 be delighted if you, a member of your runners. A special ‘thank you’ to and were presented, by Kevin, to the family or a friend, could volunteer for everyone who sponsored tea/coffee, IKA at Donor House. The branch two hours to help during this week. food etc. on the day...it was very gratefully acknowledge this venture Please contact: Patsy 087-9647231 or much appreciated. and is very appreciative of and Vera 086-8372442. thankful to Kevin. BRANCH MEETINGS Teagasc organised a very successful ANNUAL DINNER Just a reminder that our branch Tractor Pull in Ennis recently – through We are holding our annual dinner meetings are held at Edmund Rice their Green Cert class. The Branch at The Woodlands Hotel, Dunmore Heritage Centre, Barrack Street, were the recipients of the sum of Road, Waterford on Sunday April Waterford, monthly on Tuesday nights € 4000. We are very appreciative and 23rd, commencing at 4pm. We would at 7.30pm. Please try and come to thankful to all involved. love to see all patients, your families, some of the meetings - it is a great Congratulations to Sean Vaughan friends and all our helpers at this way of meeting fellow patients, on his recent successful kidney function...you are all very welcome. having a chat and hearing the latest transplant before Christmas. Please give your name to Sr. Brenda at information. the Dialysis Unit or contact Vera at 086-8372442. SYMPATHY We would like to extend our CHRISTMAS JUMPER NIGHT deepest sympathy to Molly Tyrrell and We would like to thank Séan her family on the death of Tony, RIP. Power, The Forge Inn, Portlaw, who Tony was a very active member of our held a ‘Christmas Jumper Night’ in aid branch, for over twenty years and was of our branch. A special ‘thank you’ to always willing to help with our Eddie Sullivan, Paddy Long and fundraising events. He never missed everyone who contributed to the our Annual 10K Walk since its event in anyway. inception and will be greatly missed by This Heritage Stone from the all of us who knew and respected Burren, now located in the ‘Circle WALK/RUN him. of Life’ Garden, Salthill, Galway, John D. Casey, a kidney transplant We would also like to extend our represents Co Clare’s contribution patient, organised a Walk/Run in sympathy to Noelene Saunders and to the lifegiving cause of organ Dungarvan on New Year’s Day with all her family on the death of John, RIP. donation. proceeds going to our branch. A Our thoughts and prayers are with The Garden commemorates cheque for €11,890 was presented to you. organ donors and their families, our branch Chairman, Ray and We offer our deepest sympathy to and the Clare stone forms part of a Treasurer, Vera at GSK, Dungarvan on all families who lost loved ones heritage wall consisting of stones March 7th. recently. May they rest in peace. from major sites in all 32 counties. The garden’s design also incorporates heritage stones from significant sites across all five continents to reflect the universality For Donor Cards of organ donation and welcome people from all over the world. The ‘Circle of Life’ Garden, a tranquil space across from the Prom Freetext in Salthill, offers a place for AND (ODTI) reflection and contemplation. ORGAN DONATION & TRANSPLANT IREL c/o IKA, Donor House, Parkwest, Dublin D12 P5V6 TripAdvisor has rated it as Number Tel: 01 - 620 5306 12 of 130 things to do in Galway. DONOR to 50050

IKA SUPPORT S PRING 2017 47 CORK By HELEN O’SULLIVAN

We hope that 2017 has started off 2C Dialysis ward. Tony Corbett was on well for all of you. Those of you who hand, on Thursday, with some easy got good news since our last listening Christmas songs to bring a newsletter congratulations and to all cheer and a smile to all. of you who are still waiting, hang in The patient raffle for the Christmas there it will come. Hampers took place and some of the We would like to thank those who winners were lucky to be there to assisted the Branch in selling receive their hamper from some of our Christmas cards this year. It is not an branch members. Thanks to all the easy task but we were encouraged by nurses in the various units for the number of requests we received organising the raffles and for from people all over the county, and distributing them acknowledge the effort that goes into On Friday we had our regular selling these cards. entertainers back in the ward, former Our year ended with what is now patient, Andy Dunne and his faithful CORK HAMPER WINNERS the annual Christmas entertainment in sidekick Val Cook.

Michael Kiely, Pat Drummy

John Joe Brosnan Tom O’Leary Kieran O’Connor

Helen, Breda Lucey, Veronica Denis Kelleher, Parick O’Sullivan Hampers ready for delivery

48 IKA SUPPORT S PRING 2017 ANGELSBORO CAR & TRACTOR RUN

FUNDRAISING EVENTS Their fellow employee, Richard On Tuesday, December 27th the McEvoy, featured on the RTE village of Angelsboro came to a programme ‘A Day in the Life of the standstill as over 200 tractors took to HSE’ which was shown last year. the roads for their Christmas Tractor Richard was on dialysis in Limerick Run. This year the run was in aid of at that time. We have learned that he the IKA and there were plenty of received his kidney transplant last members and their families on hand October and is doing well. He to help distribute organ donor cards competed in last year’s European and talk about organ donation and Transplant & Dialysis games in Finland the importance of having a chat with and we hope he will be fit enough to your family. compete in next year’s games in A cheque for €3,210 was Sardinia. presented to our Chairperson Noreen Thanks to all the employees of BCD O’Halloran on February 4th by the and to Kieran Kavanagh, Financial Dan Gallahue, Marian Egan, Noreel Angelsboro Tractor Run Group. There Controller, Sharon Berry and Ann O’Halloran, Michael Kiely, Mairead was a large attendance present. Marie Couch for organising the English and Dick Fraher at the presentation of cheque, proceeds BCD Engineering in Charleville fundraising raffle. from Angelsboro Car & Tractor Run recently held a raffle in aid of the IKA. Helen O’Sullivan collected a cheque

IKA SUPPORT S PRING 2017 49 CORK CONTD.

Helen O’Sullivan receives the cheque from BDC Engineering in Charleville.

of €1,950 on behalf of the Branch. explained the IKA’s position and what Ann Coakley and her daughter he, as CEO, would like to see happen recently raised money for the Dialysis to help improve organ donation ward in Cork. Ann organised a figures. Knitting and Coffee day while her Mark provided examples of other daughter Deirdre ran the Dublin City countries and what they have done to Marathon. help improve donation levels. In Spain, for instance, each ICU hospital has a FEBRUARY BRANCH MEETING donor coordinator to work with, talk CEO Mark Murphy attended our to the families and build a relationship February branch meeting to address with them to help them make a the members on some issues. Mark decision on organ donation. The spoke about the new proposed Bill yet hospital also receives a financial Ann Coakley, husband Tim and daughter Deidre presenting to go through the Houses of the contribution to help them with the the cheque to Joanne Lyons and Margaret O’Mahony Oireachtas on ‘Presumed Consent’. He costs of procuring organs and

Members of the Cork Irish Kidney Association marked World Kidney Day by staffing an information desk at Cork University Hospital. Included are Jason Kenny, Deputy General Manager CUH, Professor Liam Plant, Consultant Renal Physician, Michelle Roberts, Virology and Holiday Co-Ordinator Renal Unit, Nurses Eileeen Phelan and Joanne Lyons, members of Cork IKA, Margo McCarthy, Ann O'Halloran, Brid Kavanagh, June and Teddy O'Neill. Picture: Mike English.

50 IKA SUPPORT S PRING 2017 providing theatre space. kidney disease, how it affects people and 11th in the Rochestown Park Hotel at Similar arrangements are in treatments available. 8pm. If anyone is interested in becoming place in Croatia and Germany. involved in their local Branch, to help The IKA is also in favour of a DIALYSIS ABROAD others, or would like to become an ‘Yes’ and ‘No’ Register, that is a Please DO NOT book a holiday abroad officer or perhaps just help in any way, legal consent that ICU’s can use before making arrangements for your then please come along on the night. If to determine if patients in their dialysis. This must be done by contacting there is anything you would like to know care are consenting donors or the following: Michelle Roberts, Renal beforehand please feel free to contact not. Virology Nurse, CUH, Tel: 021-4546400 – any of the current officers. Beep 736 or 021-4920882; E: Positions to be elected on the night of UCC TALKS TO MEDICAL STUDENTS [email protected] the AGM are: Board Member to the Our members are once again, Patients need to give at least six weeks National Board; Chairperson, Secretary this year, volunteering to speak notice. and Treasurer of the Branch. to 1st and 2nd year medical These positions, excluding the Board students in UCC. Students are DATES FOR YOUR DIARY Member, also require a Vice nomnation. finding these talks very useful in Cork launch of Organ Donor Annual Golf Classic in Mitchelstown their studies as they are listening Awareness Week, Thursday, March Golf Club, Co. Cork on Friday May 26th. to real stories from real patients. 30th in the Rochestown Park Hotel at Cost per team of three, including a meal It is not an easy thing to do, 6.30pm. is €150.00. To book tee times, standing up in front of a large Cork branch AGM, Tuesday, April Email: [email protected] group of people, so a special word of thanks to those members for volunteering...Michael Kiely, Annette Beston, John Hurley, Siobhán Buckley, Donal O’Flynn, Pat O’Sullivan and Hugh Nolan.

‘BETTER HEALTH, BETTER LIVING’ COURSE On Saturday, February 25th the Branch started a ‘Wellness Programme’ in the Rochestown Park Hotel. The programme will run for 6 consecutive Saturdays and it is hoped that we may be able to run another such course later on in the year. ‘The Better Health, Better Living’ course is a self- management programme for people living with kidney disease. Living with a chronic health condition can leave people feeling as if they have lost control of their health and wellbeing. The IKA self-management programme is designed to help people learn ways of managing many of the symptoms common to those living with kidney disease.

WORLD KIDNEY DAY World Kidney Day was held on March 9th and, once again, the Branch was to the fore in providing volunteers to assist the renal medical team in CUH, Cork, meeting people coming in and out of the hospital and making them more aware of IKA SUPPORT S PRING 2017 51 DONEGAL By SIOBHÁN BATES

Eleven year old Patrick Lee McGinley (second from left) from Casheleenan, and a pupil of Scoil Cholmchille, Termon, with his younger brother, Michael Owen, and his mother Dolores, at the renal unit of Letterkenny University Hospital to present a cheque to Geraldine McGrory, CSM of the Dialysis Unit, and Siobhan and George Bates, Chairperson and PRO respectfully, of the Donegal branch of the IKA. Many thanks to all those aunt who was a patient on dialysis in fundraisers from the Donegal branch, Letterkenny. Patrick Lee raised a whose efforts are appreciated. To all fantastic sum of €2,565. who participated in the New Year Ann McGonigle, from the swim, at Rathmullen beach, and sent Glendowan Craft Studio, Meentagh monies raised to head office in Dublin Glen, Clonmany, who never forgets us we thank you. and who, once again, hosted another Thanks also to Darragh McClafferty music afternoon of ceol agus craic, and family, at the Beach Hotel in and raised €221. ‘Thank you’ to one Downing’s, for organising a fancy and all. dress for the Donegal branch €390. Thanks also to all who supported Hello everyone. was raised. the branch by buying Christmas By the time you are reading this A great big thanks goes out to cards...it was greatly appreciated. you will have all received your letters Patrick Lee McGinley from Termon for A big congratulations to Alister and from Mark Murphy, Chief Executive of organising a head shave for his late Fiona Black. Alister donated a kidney the Irish Kidney Association, asking to his lovely wife, Fiona, and both are you all to spare a few hours during doing well. ‘Organ Donor Awareness Week’. All A few days prior to this event help is needed and greatly Fiona’s brother, John Kelly, got a call appreciated. for his kidney transplant. Fantastic All Aldi stores’ in Donegal’ are celebrations for health and happiness permitted to collect on Saturday, 8th to you all. Congratulations also to all April. Stores are located in those who received the ‘gift of life’. Letterkenny, Donegal town, Our condolences to all who have Ballybofey, Buncranna and Dungloe so lost a loved one. May their souls rest do please help out in your area. in peace. Churchgate collections are taking Hello to everyone in our dialysis place on the weekend of April 16th units, the nurses, doctors and all and 17th at all Masses. Would involved in our renal care and ‘thank everyone please check that their you’ to all in the Renal Support parishes and Mass are covered and if Centre, in Beaumont,for facilitating all you need help or churchgate posters of our Donegal patients when they are and collection buckets (permit has attending their appointments in been granted), you can contact me at Dublin. anytime. Above: Darragh McClafferty and George Bates Slán go foìl...

52 IKA SUPPORT S PRING 2017 DUBLIN SOUTH

By JAMES REYNOLDS DUBLIN SOUTH IKA BRANCH

Hello and welcome from the Dublin South Branch. If you would like to help us out with the various We have a busy few months ahead with a number of locations we will be collecting at by giving us an hour or events and promotions, so stay tuned! two of your time please call James, 087-213 8309 or Thank you to all of our members and their families for email: [email protected]. their continued support. RUN FOR A LIFE ANNUAL GENERAL MEETING (AGM) This year’s Run for a Life is on Saturday, May 20th, in The IKA Dublin South branch will hold its AGM on Corkagh Park, Clondalkin, Dublin, and we are delighted Thursday April 13th in the IKA Head Office, Donor House, to see the event again in one of our local parks. Block 43A, Parkwest, Dublin 12 at 7pm sharp. Colin If you feel up to walking, jogging or running please White the National Projects Manager of the IKA will be register for the event by visiting www.runforalife.ie our guest speaker. If you would like to volunteer at the event please email: For directions or any questions call James 085- [email protected]. 2138309. It is always a great family day out and we hope to see you there! ORGAN DONOR AWARENESS WEEK This year’s Organ Donor Awareness Week is from April 1st-8th. For Donor Cards Freetext

ODTI) ORGAN DONATION & TRANSPLANT IRELAND ( c/o IKA, Donor House, Parkwest, Dublin D12 P5V6 to Tel: 01 - 620 5306 DONOR 50050

CARLOW By PAT MAY JJ CONNOLLY MEMORIAL TOURNAMENT

(L-R): The family of JJ Connolly, his sister Christine, her daughter Ashling, his parents Gerry and Jacinta presenting the cheque to Susan Tobin, Secretary Carlow Branch IKA. The Connolly family organise this fundraiser each year to keep the name of their son JJ (who died in 2014) alive.

IKA SUPPORT S PRING 2017 53 GALWAY By ANGELINE COOKE/EOIN MADDEN

Hello to everyone! Another national ‘Organ Donor Awareness Week’ is nearly upon us. The Galway launch of ODAW took place on Thursday, March 23rd in the Menlo Park Hotel, Galway at 8pm. We were delighted to once again welcome Pauline May, CNM, Organ Donation Nurse Manager for Saolta University Health Care Group as our guest speaker. Light refreshments were served. At the cheque presentation from the Corrib Hillwalking Club are (L-R): Norrie Flynn, Pat Flynn, John Farrell, Mary Flanagan, Angeline Cooke, Kevin Duffy and Frank McCann. Our annual ‘Mass of Remembrance and Thanksgiving’ for organ donors featured Counsellor Mike Kelly and they would make an ideal gift – or and their families took place in the Professor Matt Griffin, whilst the treat yourself! Church of St. John the Apostle, second featured Dietician Orla Slevin Knocknacarra, Galway, on Sunday and again Mike Kelly. They were well ANNUAL GENERAL MEETING (AGM) 26th March at 12.00 noon. More attended and very useful. Our Galway Branch AGM will be about it in the next SUPPORT. Thanks to Mike, Orla and Professor held after ‘Organ Donor Awareness Galway members will have already Griffin for giving their time. Week’ and before April 30th. We will received our branch letter with details If you have any ideas about talks or notify you in advance, by letter. Do of our ODAW fundraising. We really social events that you would like us to please give serious consideration to need your help to make this ODAW a organise, please contact Eoin, Ph: taking an active part in running your success, so if you can help, in any 086-6794008. Association. Have you a family way, please contact Eoin Madden, Ph: member or friend who would be 086-6794008 or email: ART EXHIBITION interested in attending our monthly [email protected] “Anseo is Ansiúd – Here and meetings? The only way forward for There” is Angeline Cooke's second our branch is for new people to FUNDRAISING solo exhibition of paintings in become involved. A coffee morning was held in watercolour, oil and on silk in Renzo Looking forward to meeting you at Smyth’s Service Station, Dunmore, on Café, Eyre Street, Galway (near one or all of our events, and to Friday, December 9th. ‘Thank you’ to Debenhams). The exhibition run from hearing from you. Teresa Smyth, her family, and the March 7th to April people of Dunmore for their 18th. Opening night generosity. was Saturday March The Cumann Siúl Cois Coiribe, the 11th, proceeds going Corrib Hill Walking Club, raised to IKA and the €1,520 for IKA through their Dialysis Arts sponsored climb of Croagh Patrick, in Programme at Merlin inclement weather, on January 8th. Park Hospital. Many thanks to the courageous If you are in walkers and their generous sponsors. Galway any day up to Easter, do drop in INFORMATION AFTERNOONS to Renzo’s for a cup During the year we organised two of tea/coffee and information afternoons, one last April have a look at the and one in October, specifically to beautiful paintings. help new dialysis patients. The first Reasonably priced, Oil painting by Angeline Cooke

54 IKA SUPPORT S PRING 2017 Irish Kidney Association CLG, Donor House, Block 43a, Parkwest, D12 P5V6. Tel: 01-6205306 | Lo-Call: 1890-543639 | Email: [email protected] | www.ika.ie Renal Support Centre, Beaumont Hospital, D09 Y5R3 Tel: 01-8373952 | Email: [email protected] LOCAL BRANCH SECRETARIES

CARLOW DUBLIN EAST KILDARE LONGFORD SLIGO Susan Tobin, + WICKLOW Philip Meagher, Elaine Heslin, Geraldine Jenkins, 6 Woodgrove Ave, Bernie Dwyer, Thomastown, Augharickard, 96 Doorly Park, Rathvily, 40 Granville Road, Enfield, Shroid, Longford, Sligo, Co. Carlow Cabinteely, Co. Meath Co. Longford. Co. Sligo. Co. Dublin Phone: Phone: Phone: Phone: Phone: 087-6635910 083-4877091 087-9444515 086-0873552 086-1673467

CAVAN/MONAGHAN DUBLIN NORTH KILKENNY LOUTH/MEATH TIPPERARY Richard Conlon, Patricia Mackenzie, Seamus Carrigan, Mary Traynor, Orla Hogan-Ryan, Drumnaveil North, 49 Martello Court, Burnchurch Viper, 9 Blackhill Crescent, 17 Hawthorns, Station Road, Portmarnock, Kells, Donnacarney Nenagh Cootehill, Co. Cavan Co. Dublin. Co. Kilkenny. Co. Meath Co. Tipperary. Phone: Phone: Phone: Phone: Phone: 087-6478851 087-9576808 085-7683179 089-4348086 087-2806068

CLARE DUBLIN SOUTH LAOIS MAYO WATERFORD Michael Mescall, Peter Pardoe, Angela Lyons, Maureen Bourke, Patricia Meade, Lissenair, 57 Monastery Dr, Cloverfield, St. Anthony’s, 1 Brook Road, Kilmihil, Clondalkin, The Swan, Carrowcushlaun, Knockboy, Co. Clare. Dublin 22. Co. Laois. Ballina, Co. Mayo. Waterford City. Phone Phone: Phone: Phone: Phone: 087-2933963 087-2424350 087-7633438 087-6604133 087-9647231

CORK GALWAY LEITRIM OFFALY WESTMEATH Helen O’Sullivan, Eoin Madden, Cathriona Charles, Maureen Allen, Cathy Smyth, 25 Aldworth Heights, Carnakelly North, Gortfadda, St. Mary’s Road, 31 Churchhills Road, St. Joseph’s Road, Athenry Mohill, Edenderry, Coosan, Athlone, Mallow, Co. Cork. Co. Galway. Co. Leitrim. Co. Offaly. Co. Westmeath. Phone: Phone: Phone: Phone: Phone: 086-2755754 086-6794008 087-9768637 086-1982024 086-8049487

DONEGAL KERRY LIMERICK ROSCOMMON WEXFORD Sharon Gallagher, Theresa Looney, Mary Downes, Maura Quigley, Dora Kent, Pillar Park, Inch, Kilcummin, 6 The Gardens, Creevy, Newtown, Ramsgrange, Buncrana, Killarney, New Rd., Pennywell Roscommon, New Ross, Co. Donegal. Co. Kerry. Co. Limerick Co. Roscommon. Co. Wexford. Phone Phone: Phone: Phone: Phone: 086-3459112 087-2059205 087-9612-133 086-8969670 086-3745788