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Editorial... I t is nice to begin an editorial with funding for more staffing becomes the good news that the available. We recognise the heavy vaccination rollout has quickened work burden and stress on already pace with nearly all of our very busy healthcare professionals as community having received their first a result of COVID-19, and now they dose, and many have received their have the added issue of cyber second. The happiness and relief are hacking. It is disappointing for very obvious and almost palpable. centre-based dialysis patients that The Irish Kidney Association (IKA) they cannot go on holidays far away assisted the HSE to spread the good from their dialysis centres. Holidays news with some of our community are such an important part of taking part in HSE vaccination wellbeing. advertising campaigns We are planning to including a TV advert re-open our holiday and information booklet homes to transplant which was distributed to recipients and home every home nationwide. dialysis patients and their The vaccination families on July 1st, with campaign was planned extra cleaning to be to reach huge volumes undertaken and capacity of people, which it restricted to keep guests achieved. However, not safe from COVID-19. enough attention was There will be two spent on communication apartments in Tramore with patients, which did available for 7-day cause unnecessary holidays, and there will anxiety. The IKA worked also be availability in closely with the HSE to address this, Tralee and Killarney for 5-day and we dealt with many questions holidays. More details on page 15. from patients. We also helped COVID-19 and the cyber hacking patients who had not been contacted have had a major impact on health to get vaccinations. services, and this will continue. Much Some studies have questioned the credit is due to the HSE who have effectiveness of the vaccine in successfully continued dialysis immune compromised patients, and services and the transplant it is likely that booster shots will be programme (albeit transplant figures required. In consultation with the in the year to date are lower than National Renal Office (NRO) we normal). advise people to continue to observe What both the pandemic and the safety guidelines. For more cyber hacking have shown, is the details see article on page 6-7. need to have a strong support We also discussed the return of foundation around delivery of holiday dialysis in Ireland with the services to patients. A useful NRO. Unfortunately, due to capacity metaphor is to think of people Contents... issues in dialysis units, it is unlikely this will happen until later this Summer, when hopefully extra FRONT COVER 2 EDITORIAL staying in a house (and compare it with patient services). If the house is well insulated it will keep people safe 4 RAY OF HOPE RAY OF HOPE 6 VACCINATION UPDATE Dialysis mother 7 A SECOND CALLING...FOR THREE TRANSPLANT Lorna McSwiggan TEENAGERS and her daughter 8 TWO STEPS TO FREEDOM Nadia at their local 9 SUMMER GIVEAWAY beach in Sandycove, 10 REFLECTING ON FIRST VIRTUAL Dublin promoting ORGAN DONOR AWARENESS WEEK – SUMMER – Organ Donor 14 LIGHTING UP IN GREEN 5 x €100 vouchersat and Skincare products for Suncare Awareness Week. 15 HOLIDAY HOMES RE-OPENING 2021 SEE PAGE 9 Story on page 4-5. 16 DENISE’S STORY...LIFE BEGINS AT 40 18 TOMAS’S STORY...TIPPERARY STUDENT RECEIVES Photo: Conor McCabe LIVER TRANSPLANT 2 IKA S U P P O R T S U M M E R 2021
and comfortable – (i.e. the support cards for black fabric. Orders are already flying foundation). If the foundation of the patients, easier out for the popular unisex face house is crumbling eventually patients access to and mask, priced at €10 each including get hurt and services are affected. more supports postage and packing. The face mask The Association’s new strategy will for home is of the highest quality and has a make sure our ‘support foundation’ dialysis, ways pocket for a disposable filter and, (the house) is strong and secure, so to expand our best of all, it is made in Ireland! that patients can safely enjoy the kidney I am very conscious that many of services we provide, and we can transplant our members are not online and maintain the trust of our contributors. treatments, may not be receiving our emails or At the moment the Board is focused holiday dialysis taking part in our online forums. on strengthening the ‘house or upgrading With Government services foundations’ in order for us to have a of dialysis increasingly moving online, and the firm base for improving and expanding units? You restrictions of COVID-19, such our services. The Board has continued might let your local branch officers people are at a huge disadvantage. To working to ensure that our know your top priorities. help address this, we have partnered organisation is compliant with the If your branch would like to try with Age Action Ireland to provide up Charities’ Governance Code and has Zoom for holding meetings online, to six hours of free basic computer also been taking part in an ongoing please contact Colin White, our training and assistance in the use of independent review of its own National Advocacy & Projects Manager, smartphones for people over 55 years effectiveness as a board. who will be pleased to assist – of age. All that you need to participate In light of COVID-19, the Board colin@ika.ie is a smartphone. took the decision to defer branch We also looked at developing a More information about this can be AGMs until next year because many of phone and Zoom peer support pilot obtained from Age Action, Phone: our Branches cannot hold meetings programme. 01-4756989. effectively. Our national AGM will be As we go to print, we have just Another volunteer group called held virtually on Saturday, 4th completed a member survey to explore GenerationTech, which offers free September (details will be advised). the demand for patient services in support to people 65 years of age and We ran a successful virtual Organ Cork. A Board sub-committee is older who wish to seek advice on Donor Awareness Week 2021, and considering the options for the best technical matters, can also be you will find more details on page use of the properties we have contacted on a helpline at Phone: 10-13. Our continued heartfelt acquired, and we are also conducting 01-9633288 which is open from gratitude and appreciation goes to a feasibility study on how to maximise 8am-8pm weekdays with a call back organ donors and donor families who the benefit of the properties. facility at weekends. are central to this life-saving Following on from these findings, As you can see, we are very busy awareness campaign. the Board will be in a position to make working on behalf of you, our We had another successful Zoom a final decision as to the best way members. Hopefully, we are now at session for branch officers, where we forward. the beginning of the end of the looked at developing successful We have recently established an COVID-19 pandemic and, that soon, campaigns for improving patient online shop on our website for we can begin safely meeting face to services and the work and skills branded face masks and t-shirts as face again. needed to do this. The Branches are well as the popular kidney diet We offer our deepest condolences now looking at what the priorities for appropriate 'Truly Tasty' cookbook. The to all of you who have experienced the campaigning should be. So make sure quality face mask, pictured above, is loss of loved ones recently. your local branch knows your views! tastefully branded with 'Organ What is most important to you, our Donation, Gift of Life' and the forget- CAROL MOORE members? Is it automatic medical me-not flower emblem on one side on CHIEF EXECUTIVE OFFICER 20 SIOBHAN’S STORY...HOPE AND LOVE = 36 HERE COMES THE SUMMER! ORGAN DONATION 37 WHAT’S YOUR STORY? 22 STEPHEN’S STORY...9TH CALL GIVES BREATH OF 38 NEXT STEPS FORWARD FOR RENAL SERVICES FRESH AIR TO STEPHEN 41 A RETURN TO SPORT? 24 JULIETTE’S STORY...JUNIOR DOC JULIETTE THANKS 42 JOHN’S INTER-COUNTY SPORTING CAREER KICKED DONORS TO TOUCH! 45 WORLD KIDNEY DAY STEP CHALLENGE 26 TRANSPLANT EDUCATION & ACTIVITY MOVEMENT 46 SOCIAL MEDIA & COMMUNICATION (TEAM) 48 NORA ENJOYS 40 YEARS WITH BROTHER’S DONOR 28 TAXI TALES KIDNEY 29 GETTING MORTGAGE PROTECTION OR LIFE 49 PEDALING THROUGH DIALYSIS INSURANCE FOR KIDNEY PATIENTS 50 ‘LOOP THE LOOP’ GOES GLOBAL FOR SANDY 30 DAUGHTER’S TRIBUTE TO LATE DIALYSIS FATHER 52 AROUND THE BRANCHES 32 SOFIA’S EGG-TRAVAGANZA 62 MEMBERSHIP FORM 34 DISEASE VS. ILLNESS 63 BRANCH SECRETARIES IKA S U P P O R T S U M M E R 2021 3
By GWEN O’DONOGHUE Lorna got to hold Nadia for the first time when she was a week old. FOR DIALYSIS MOTHER AWAITING TRANSPLANT L orna, who like most other called for a register which will Springtime rays of sunshine graced our dialysis patients is in the record not only people's wishes country during Organ Donor Awareness extremely high-risk group to Opt Out but also their wishes for COVID-19, has been to Opt In, the latter offering the Week 2021 amid 5km travel restrictions as cocooning for over a year and opportunity to confirm your a result of COVID-19. half. Just after last Christmas, willingness to donate and Earning front page her husband Richard Martin and prompting conversation with position in the Irish daughter Nadia tested positive family about your wishes. for COVID-19, however luckily In June 2019, Lorna’s world Times was a photo of Lorna tested negative. was turned upside down when dialysis mother Lorna Lorna who has been on the kidney failure led her to having McSwiggan and her waiting list for a kidney to undergo a C-section to toddler daughter transplant since March 2020 deliver her baby girl, Nadia. says that ‘organ donors offer a Nadia was born two months Nadia (then 21 ray of hope’ and she shared her prematurely and weighed just 3 months old) at their story during Organ Donor pounds 4 ounces. Within a local Sandycove Awareness Week 2021 which minute of being born, Nadia beach in Dublin. garnered a lot of publicity in required CPR and then was national and local newspapers. cared for in the Neonatal Unit at Lorna (40), a nurse A month later she also did an the National Maternity Hospital who has in the past worked at Crumlin interview on national radio in Holles Street while Lorna was Children’s Hospital with kidney patient station Newstalk which was transferred to St. Vincent’s children, was herself catapulted into kidney shared on a network of local Hospital for treatment where radio stations regarding the she remained for almost a week failure halfway through her second proposed amendment to before she could be reunited pregnancy in 2019. Her two months legislation around the Human with her new-born in the premature baby was named Nadia Rae Tissue Bill in relation to consent neonatal intensive care unit. (meaning Ray of Hope). around organ donation. While Baby Nadia then came home welcoming its introduction she safely to her family a few weeks 4 IKA S U P P O R T S U M M E R 2021
later and has been thriving ever since. Lorna, the proud mother of Nadia who is now 2- years-old and Kai who is 12- Due to my years-old, said, “Being able kidney failure I to live long enough to see my children grow up would am currently be the greatest gift I could unable to return ever receive. Regrettably, to my job none of my family, although nursing as I willing, are suitable living kidney donors for me so I would ind it live in hope for a deceased impossible to donor kidney. Organ donors tolerate with its offer a ray of hope to me long hours and and others on transplant waiting lists and to our the physical families also.” impact of my Lorna explained, “Nadia condition. Rae Vale was the name that myself and Richard chose for our tiny new-born, our Ray of Hope. Nadia means Hope and Rae is the female version of Ray. Rae and Vale comes from her two has also impacted on my team at Beacon Renal. husband Richard and my grandmothers’ names ability to work as I am so I have a great support best friend Dr. Carthage Valerie and Rae. high risk and I have been network including my Carroll who has been a “I started dialysis cocooning for over a year. family, my parents and great support.” treatment in June 2019 as I “I have been on the went into renal failure transplant waiting list since during pregnancy with Nadia. I have a renal March 2020. Unfortunately, none of my family are COVID19 condition called Alport suitable donors so I am Syndrome and I am the only known family member with relying on a deceased donor transplant to happen. Tech Help this condition. “I attend the Beacon Generation Tech wants to ensure that everyone aged 65+ “Due to my kidney failure Clinic for my three hourly on the island of Ireland has access to technology. As the I am currently unable to dialysis treatments. I am so vaccine roll out continues we want to remind the public of return to my job nursing as I thankful to the care I have our presence and to ensure that the public knows we will would find it impossible to received from my continue to provide our service after the pandemic. tolerate with its long hours Consultants Professor and the physical impact of Watson, Professor Holian WE HAVE A VOLUNTEER TECH HELPLINE my condition. The pandemic and the amazing dialysis FOR OLDER PEOPLE • We will help anyone with an IT issue, as long as it is an a person aged 65 and over. • We are a volunteer IT group offering over the phone help to resolve any IT or technical issues you might have. • Tablets, phones, PCs, software, other hardware as well as Apps and communications. HOW TO CONTACT US █ Ring our contact number 019633288 and one of our volunteers will answer your call. █ Direct Message (DM) on our twitter handle @Covid19_tech – hashtag is #TechHelpCovid19 and leave a brief explanation. █ Facebook page Covid19TechHelp. • This is a completely FREE service. All time is donated by volunteers. • No personal details such as access to bank details, cards etc. is required. • Call distribution is random and all calls are recorded. The Twitter feed is also logged. IKA S U P P O R T S U M M E R 2021 5
Ireland: % of age groups that have been vaccinated – As of 24th May 2021 As of the 24th of May ~47 % of the adult population have received their 1st dose of the vaccine and ~17 % have been fully vaccinated. Note: Numbers exclude GP vaccinations from 14th of May. Chart showing the % population vaccinated by age group % of population received 1st dose % of population fully vaccinated 97% 98% 89% 88% 73% 68% 21% 15% 15% 5% 6% 8% 1% 0-19 20-39 40-49 50-59 60-69 70-84 85+ SOURCE: HSE Vaccination UPDATE F rom a survey we carried out, contact second dose of AstraZeneca for ALL with renal units and anecdotal people has been confirmed at 12 COVID-19 reports received, it would appear weeks, at the time of writing – NPHET that almost every renal patient (group 4 are reviewing the possibility of reducing vaccine or group 7) who wanted the vaccine the gap. The gap between the mRNA has received their first dose. doses (Pfizer-BioNTech and Moderna) is It is important to note that as the currently 4 weeks. Some readers will rollout continues to move down the age have received a confirmed date for their categories, it does not mean that those second dose at the time of receiving in older categories have ‘missed’ their their first dose whilst others will have Thankfully, the vaccine rollout opportunity. The programme is still been told that they will be contacted. has been able to carry on open to everyone in the current Based on the vaccine you received, despite the cyber-attack on the advertised age category AND all those you will know when you are due your who are older. Equally, it is still open to second dose. If you have not received HSE. From the graph above you people in group 4 and group 7 for their an appointment when you are can see that the uptake of the first dose. If you have not yet received approaching a few days before the due vaccines has been very high in your first dose, please contact me date, it is suggested that you contact (email: colin@ika.ie). HSE Live (tel.1850-241850 or you can the two older age categories. Second doses for people who find them on Twitter). I have found It is also interesting to see the received the AstraZeneca vaccine are them very prompt in replying to direct uptake in the 60-69 year-olds starting to happen and we shall soon messages on Twitter both from the IKA see people who received the Pfizer- account and my own personal account. as this is the first age category BioNTech or Moderna vaccines also Have your PPSN ready. that used the online portal to being called for their second dose. We We have received a number of book their appointments. have been informed by the HSE that the enquiries about the possibility of having place that organised your first dose will an mRNA vaccine as your second dose if BY COLIN WHITE, also organise your second dose. you had AstraZeneca as your first dose. Appointment notices should arrive via We have conveyed this enquiry to the NATIONAL ADVOCACY phone calls or text messages. HSE, and the latest response is that the & PROJECTS MANAGER The gap between the first and data is currently insufficient to prove the 6 IKA S U P P O R T S U M M E R 2021
value of doing this. However, research is Lana Devine, ongoing and there may be a change of Gearóid Wrafter and Rebecca Osgood policy down the line. Pic: Conor McCabe As with the rollout of the first dose, Photography we are happy to help if people are having problems getting an appointment for the second dose. You may have heard about or read of the ‘vaccine bonus’ that opens up to people after their second dose of vaccine. The specifics are obviously dependent on the conditions at the time, but it currently refers to meeting up with other households and individuals. However, it is important to realise that, like any vaccine, the efficacy of the COVID-19 vaccines is likely to be lower amongst those with compromised immune systems compared to the general population. That said, nephrologists and transplant physicians, both here and internationally, are advising their patients to take the vaccine when offered and to ensure that they receive both doses as there will be some protection. NPHET is currently A SECOND CALLING... considering whether follow-on booster shots may be required. FOR THREE TRANSPLANT TEENAGERS A The current advice, both here and in fter a year of Meath footballer Jody trepidation, three By GWEN O’DONOGHUE Devine and mother other countries, is for people who are immune compromised to continue kidney transplant teenagers Emer and two younger brothers following the precautions of wearing a came out of cocooning on Thursday, Liam (13) and Joe (7). mask, washing hands and avoiding 8th April when they attended Soon afterwards two other kidney congested indoor venues. Beaumont Hospital for an transplant recipient teens were given It appears we are now at the unprecedented cause for their second dose of the vaccine and beginning of the end of pandemic, the celebration. The former patients at an increased level of reassurance. vaccine rollout has picked up pace and Temple Street Children’s Hospital Gearóid Wrafter (16) from the early statistics coming out are were among the first in the revised Loughaun, Tullamore, Co Offaly showing that the vaccines are proving to Group 4, classified as very high-risk, travelled to Beaumont with his be very effective in the general to receive their second and final mother Theresa and sister Denise. population. We will continue to share all ‘shot in the arm’ of the Also joining them was Rebecca the reliable information that we receive. Pfizer/BioNTech vaccine, against Osgood Daly (17), whose kidney Please feel free to get in touch with COVID-19. They were photographed donor mother Bernie Osgood had your questions and experiences. outside the Irish Kidney Association's driven her daughter to her hospital Renal Support Centre at Beaumont appointment from Ballinlough, Co In a joint statement by the International Hospital. Their good news story Roscommon. Society for Heart and Lung Transplantation garnered lots of coverage in national Their vaccines were given during (ISHLT) and the American Society of and local media. the Easter school holidays. Gearóid Transplantation (AST) issued on June 2nd, on With the changes in the vaccine received his kidney transplant in COVID-19 Vaccination in Solid Organ rollout that were introduced in 2015 and is a 5th year student at Transplant Recipients (SOT), it stated, March, revised Group 4 was Killina Secondary School. Rebecca, "we strongly caution against concluding extended from 18-69 years to also a 5th year student, attends that low antibody response rate to SARS-CoV- include 16 and 17-year-olds. With Ballyhaunis Community School in 2, (COVID-19) vaccination will lead to reduced the Pfizer-BioNTech vaccine being Mayo where her mother Bernie, clinical effectiveness until more information is the only one currently approved for who donated a kidney to her in available. These results should not prompt or 16 and 17-year-olds, the three teens 2010, is a teacher. encourage vaccine hesitancy in SOT were added to the group for Lana, is a Transition Year student recipients". In the statement it concluded that vaccinations thereby allowing them in Eureka Secondary School in Kells. "until more complete data is available, we to return to school. She received her kidney transplant in urge continued adherence of all transplant First of the three to receive her 2008 when she was just 4-years-old recipients to protective measures including second dose was Lana Devine (16) following two years of nightly masking, and social distancing regardless of from Kells, Co. Meath who was dialysis treatment as she was born vaccination status." accompanied by her parents, former with dysplastic kidneys. IKA S U P P O R T S U M M E R 2021 7
TWO STEPS TO FREEDOM T here was almost a By GWEN O’DONOGHUE palpable sense of relief and Harry Ward, David Beirne, Shaun Faloon, Dublin Roscommon Limerick excitement for transplant recipients and dialysis patients as they made a return visit to vaccine centres around the country in early Summer 2021 for their second dose of a COVID- 19 vaccine. It was a momentous event back in March 2021 when the rollout for the first dose of the vaccines for this community categorised as 'very high risk' commenced as many had been hibernating for over a year. Most of this vulnerable group were allocated the AstraZeneca vaccine in two doses taken three months apart. As the AstraZeneca vaccine was not licensed for the 16 and 17 year olds, who are also in the 'very high risk' group, Kieran Murray, Donegal Matthew Holland, Tipperary Antoinette Power, Tipperary these teens received the Pfizer BioNTech vaccine Pat O’Sullivan, Cork which had a shorter gap of less than a month between first and second doses. Almost all members of this vulnerable community have now received their second vaccine dose, with the prospect of a booster shot into the future. Aodhagan Cullen, Cavan They can finally breathe a sigh of relief James Reynolds, Susan Mulligan, Dublin Roscommon and feel a little more protected against COVID- 19 though knowing that face masks, hand washing and avoiding crowds are still best practice.. Pictured are transplant recipients and dialysis patients in celebratory mood after receiving their second COVID-19 vaccine dose. Stephen Byrne, Kerry 8 IKA S U P P O R T S U M M E R 2021
Julie Sutcliffe, Wicklow – SUMMER – Angela Sherlock, Dublin 5 x €100 vouchers for Suncare and Skincare products at Elizabeth Ferry, Galway CarePlus Pharmacy is Ireland's fastest growing independent retail pharmacy group. Its first store was established in Cork in 2015 and now a CarePlus Pharmacy can be found in most key towns and counties around Ireland. The Irish Kidney Association is delighted to partner with CarePlus Pharmacy, to remind our readers, especially transplant recipients, of the importance of sun protection, not just in summer but all year round. Transplant recipients need to be particularly careful of the sun as they are at a significantly higher risk of developing skin cancer than the general population because of the medication they take. Sun protection starts with regular use of protective clothing, seeking shade, and for additional protection, the daily frequent application of sunscreen to exposed areas. Sun Protection Factor (SPF) 50+ is recommended. It is important to use a sunscreen that protects against UVA and UVB rays. These sunscreens are usually branded ‘broad spectrum’. Sunscreen should be applied 20-30 minutes before Sarah Dalton, Dublin going outside, and should be reapplied every 2 hours. Reapply SPF after exercising, swimming, sweating or towel drying. Even ‘water- resistant’ sunscreens need to be reapplied. For more information see: https://irishskin.ie/sun-protection-for-organ-transplant-recipients/ 5 lucky readers will each receive a €100 voucher for suncare and skincare products which can be used at any CarePlus Pharmacy. To be in with a chance to win, email: colin@ika.ie with your name, address and phone number, making sure to include the words CarePlus Sun Protect in the subject line of your email. 5 winners will be selected at random and will each receive a €100 voucher which can be used at any CarePlus Pharmacy branch nationwide – www.careplus.ie *Offer applies to suncare and skincare products only and does not include prescriptions, medicines, baby food, vouchers, gift cards and in-store services. IKA S U P P O R T S U M M E R 2021 9
Reflecting on First Virtual ORGAN DONOR AWARENESS WEEK Minister Stephen Donnelly speaking at the campaign ‘An Irishman Abroad’ launch. podcaster Jarlath Regan T he Irish Kidney The ‘Pass it on’ concept Association’s foray into By GWEN O’DONOGHUE was also translated into an its first ever VIRTUAL highlighting the importance liver transplant recipient, as Irish language version with Organ Donor organ donor awareness to well as comedian and ‘An Mary Kennedy and grateful Awareness Week campaign the public at large while Irishman Abroad’ blogger transplant recipients or their this year proved successful following government Jarlath Regan, who donated family members speaking ‘as with lots of publicity restrictions and not a kidney to his brother. gaeilge’. generated in print media jeopardising the safety of Previous organ donor Jarlath Regan’s podcast and online and engagement our members. The ‘mostly’ awareness ambassadors for covered three inspiring by the public. The campaign virtual Organ Donor the IKA, including kidney interviews including one has had almost three Awareness Week 2021 donor Vivienne Traynor, with Vivienne Traynor, who decades long of tradition of campaign was held, amid Mary Kennedy and Ray like him is a living kidney being held every year in travel restrictions, from D’Arcy, all willingly lent their donor, and also with James Spring, but last year it had 27th March to 3rd April. support to the campaign. Nolan, the prolific champion to be cancelled with just a It has to be Ray D’Arcy also covered an butcher, transplant recipient few weeks’ notice. This acknowledged that without interview to highlight the and founder of the unprecedented cancellation the support of volunteers in campaign on his RTE1 radio successful Punchestown was in response to the the community, the business show and so also did his Kidney Research Fund. global pandemic which took sector’s sponsorship and the fellow RTE presenter It was a particularly major all of us off guard and most media’s cooperation, it Jennifer Zamparelli, who, coup that Jarlath could of us, non-front-line would not have been like Ray, regularly covers attract Lucy Davis, the star workers, retreated to our possible to run the organ donation on her 2FM of internationally renowned homes as fears about the campaign successfully. show. TV Hit series ‘The Office’ virus engulfed the world. People from a broad Celebrities took part in a and daughter of British Since the onset of section of the community chain of videos passing on comedian Jasper Carrott, to COVID-19, transplant came on board with great the donor card with the do a candid and first ever activity in our hospitals has enthusiasm to support the message ‘Life is a Gift, public interview about her slowed down while people campaign. Social media Pass it On’. The videos were experience with kidney continued to wait for ‘the Influencers shared posts shared widely. This concept failure and receiving a donor call’. This can be seen in about the campaign and of passing on the donor kidney from her mother the table of figures at the our own community kept card started with Irish Hazel in 1997. end of this article (on page busy liking and sharing diaspora from five The Minister for Health 13). stories from our various continents around the Stephen Donnelly sent his The IKA decided that digital platforms. world on St. Patrick’s Day address by video for our first despite the challenges Celebrities supporting the with an end clip flagging ever virtual launch of Organ which still prevail with campaign included actress our Organ Donor Awareness Donor Awareness Week COVID-19, that it was vital, and singer Angeline Ball, Week campaign and how to 2021 which was held on this year, to continue whose niece Saoirse is a get a donor card. Tuesday, 23rd March. 10 IKA S U P P O R T S U M M E R 2021
IKA CEO Carol Moore, performed the role of master of ceremonies Sallyanne and Ian O’Doherty at the online launch Derry Clarke heart patient Joining in to watch the forward to the enactment of work in delivering the organ Cavan native Stephen Smith launch online were IKA the current Human Tissuc donation and who finally received a lung members and media as well Bill in relation to Opt-Out transplantation process, and transplant after being called as many others invested in consent for organ donation. he offered his condolences eight times previously. the organ donation and In his recorded speech, to all the people who have Recently qualified junior transplantation journey, the Minister also said, “With lost loved ones during doctor Juliette Duff spoke from the various transplant the continued successful COVID-19. He explained about her kidney failure and teams as well as other rollout of the vaccination how in these times it has the transplant which she patient advocacy groups. programme there are better been very difficult for received while studying Technical difficulties days ahead for all of us. If all dialysis patients and medicine. prevented some people of us share our intentions transplant recipients who These inspirational being able to watch the live with our families to pass on are extremely vulnerable to people have written launch online but, the ‘gift of life’, there will be COVID-19 infection. personal accounts of their fortunately, they could better days ahead for those People who received health stories which are watch back the recorded waiting for organ heart, lung, liver, kidney, featured in this issue on launch soon afterwards via transplants also.” and pancreas transplants pages 16-25. our website. Carol Moore, the Chief shared their experiences A particularly poignant Dr. Catherine Executive of the IKA through pre-recorded moment of the launch was Motherway, Clinical Lead, performed the role of interviews for the online a pre-recorded video of 46- Organ Donation Transplant master of ceremonies at the launch. Each of them year-old Limerick man, Ian Ireland (ODTI) spoke of her online launch and while echoed the same underlying O’Doherty, (pictured below) experience working at the outlining the campaign, she sentiment, their profound who spoke from his bed in coalface as an intensivist also welcomed the Minister’s gratitude for the ‘gift of life’ the CCU at the Mater and Head of ICU at announcement about they had received. Hospital where he explained University Hospital Limerick. additional funding. They included Tomas how he has been an in- She spoke of how humbling Referring to the profound Caffrey, a 21-year-old patient since July 2020 and it is to support families in generosity of the families of student from Tipperary who that he has received two the decision-making process organ donors, the IKA’s received a liver transplant, calls for donor hearts., around donating a loved national honorary chairman Denise Geoghegan from neither of which happened. one’s organs. Colin Mackenzie stated that Laois who received a heart Ian and his family including While applauding the “If we ever lose faith in transplant, Siobhan Brady his 19-year-old daughter work of the IKA and others humanity, just think of who underwent a combined Ava, desperately hope for in the promotion of organ organ donor families.” He kidney and pancreas the ‘gift of life’ before time donation, as well as also thanked those who transplant and her fellow continued next page honouring organ donors, Minister Donnelly gave special mention to Sallyanne and Derry Clarke for lending their support to the campaign launch by sharing their experience about their decision to honour their late son Andrew’s wish to be an organ donor. Minister Donnelly announced €.75 million funding to support improvements in organ donation and transplantation services while saying he was looking Ian in his hospital bed in CCU at the Mater Hospital Ian with his daughter Ava IKA S U P P O R T S U M M E R 2021 11
Deborah Cervi at Swords Castle Minister Stephen Donnelly, wearing the forget-me-not on TV News Dr. Colm Henry wearing the forget-me-not on TV Dr. Ronan Glynn wearing the forget-me-not on TV runs out. newspapers, and on social language versions of the In our Spring issue of media and thereby posters were well received. SUPPORT we reported that generated even more Clear Channel also over 30 public sites would awareness and goodwill for sponsored the display of be ‘lighting up in green’ a life-saving cause and was posters in over 30 shopping from dusk to dawn in a welcome distraction from centres around the country support of Organ Donor COVID-19. while some local and Awareness Week, as green A new design approach national newspapers also is the internationally was taken with the featured the poster free of recognised colour which campaign posters as they charge. The poster also celebrates organ donation. featured photos of 32 made a cameo appearance By the time the organ donor grateful transplants, of all on several days during awareness campaign week ages and all walks of life, Awareness Week on the set came around almost every who collectively are enjoying of RTE’s long-running TV County Council came on over 400 years of extended series FAIRCITY. board. life thanks to their gift of life At televised media In the end, a total of 91 from deceased donors – a Poster on display at Milford Shopping Centre briefings on COVID-19, Dr. public sites were ‘lit up in powerful message about the this issue). Ronan Glynn, the Deputy green’ for the campaign’s success of organ donation! The posters were Chief Medical Officer and week-long duration. Sites The Campaign Week poster distributed by the Irish Dr. Colm Henry, Chief included Dublin’s was adapted and another Pharmacy Union who Clinical Officer, HSE could Convention Centre, the version, for display, all year circulated them to over be seen wearing the IKA’s Mansion House, public round, features 42 people 1850 pharmacies for display forget-me-not flowers and libraries, town squares, a who also received deceased during Awareness Week and Minister Stephen Donnelly bridge, church, a donor transplants and are all year round and our was also seen on TV News monument, and lots of enjoying over 520 years of branches sought out public wearing the distinctive council town halls around extended life (and can be locations to display them emblem in support of the the country. seen on the back cover of locally. The Irish and Polish campaign. This visually impactful initiative, which was the brainchild of the IKA’s holiday coordinator, Deborah Cervi, captured the imagination of people, prompting conversation amongst the general public. It offered our network of branch volunteers and county councils an opportunity to hold socially distanced photocalls in the evenings which were covered by local The poster appeared on FAIRCITY 12 IKA S U P P O R T S U M M E R 2021
Many other people optimistic that a suitable to respond with numerous national paper of record responded to a callout on donor might come along downloads of our digital The Irish Times during the our social media to share before he exchanges organ donor card app as campaign Week. Lorna’s their health stories for organ wedding vows with his well as requests for donor story is covered on page donor awareness and they fiancée Traci next year. They cards to be posted, all of 4-5. engaged in media interviews were forced to cancel their which will generate more While fundraising for the which were broadcast on wedding celebration last conversations about the campaign is vital for the radio and could be read in year due to COVID-19. You importance of organ continuance of the work local and national papers. can read more about John donation. which the IKA does in Publicly sharing personal on pages 42-44. Stories were shared about advocating for and offering health stories is the A family with hereditary milestone kidney transplant support to kidney patients cornerstone of the success kidney disease supported anniversaries of people, and their families, the only of awareness campaigns as the campaign and featured some of whom are focus of this year’s virtual it has been proven that in a video for the Irish celebrating more than four Organ Donor Awareness hearing about and reading Independent and Sunday decades of successful Week was to keep the about real life experiences World online. This was transplantation. importance organ donation with organ failure and/or shared on our social media An uplifting story about and saving lives at the transplantation is what and garnered a lot of sisters, who underwent a forefront of people’s minds resonate with the public interest as two sisters Emma living donor kidney and hearts. prompting the all-important O’Connor and Louise transplant in December We hope that later this awareness and discussion Cowman were involved in a 2020, proved timely for year when we are all living about organ donation. living donor kidney Mother’s Day which took in a safer environment For those people whose transplant. place two weeks before which is more protected stories were not covered this In the video they Organ Donor Awareness from COVID-19, that there time round, we hope to discussed how four Week and appeared on the will be a resurgence of engage with you for future generations of their family front page of national activity and fundraising. organ donor awareness were affected by Polycystic newspaper the Irish While we successfully campaigns. Kidney Disease and a cousin Examiner. learned how to quickly Former Westmeath senior of theirs underwent a As the campaign week adapt to the challenges of footballer John Egan’s kidney transplant in Sweden came to a close, 7-year-old the pandemic and moved successful sporting career just a few days before Sofia Corey could enjoy her our activity to online, we was cut short due to his Awareness Week. first ever Easter egg thanks look forward with optimism kidney disease and he During Awareness Week to the deceased donor to working with our branch recorded a video which was another transplant counsin transplant she received just officers, our members and shared on our social media. attended the wedding of before Christmas 2020 (see supporters, and delivering a Since then he has her daughter who works as page 32-33). successful non-virtual Organ commenced home dialysis a nurse in the transplant A photo of a nurse, Lorna Donor Awareness Week and despite recently unit at Beaumont Hospital. McSwiggan, who went into campaign in 2022. learning that two members Many other health stories renal failure on her second Campaign materials of his family have been were shared in papers and pregnancy with her toddler including a video of the tested and are not suitable on radio stations around the daughter, featured on the online launch are available living donors he remains country inspiring the public front page of Ireland’s on ww.ika.ie/donorweek2021 ORGAN DONATION AND TRANSPLANTATION ACTIVITY - 10 YEAR COMPARISONS 2020 2019 2018 2017 2016 2015 2014 2013 2012 2011 10 year 10 year Total avg. Deceased Donors 62 85 81 99 77 81 63 86 78 93 805 80.5 Transplantation Kidney 95 128 127 141 122 120 112 147 131 165 1288 128.8 from Deceased Liver 37 66 56 62 58 61 44 55 50 61 550 55.0 Donors Heart 9 15 18 16 15 16 18 11 10 6 134 13.4 Lung 16 38 28 36 35 36 31 32 14 8 274 27.4 Pancreas 5 2 5 5 0 0 6 11 1 8 43 4.3 SUB-TOTAL 162 249 234 260 230 233 211 256 206 248 2289 228.9 Living kidney donors 28 25 40 51 50 33 40 38 32 27 364 36.4 & transplants All organ transplants TOTAL 190 274 274 311 280 266 251 294 238 275 2653 265.3 Living & deceased 123 153 167 192 172 153 152 185 163 192 1652 165.2 donor kidney Tx IKA S U P P O R T S U M M E R 2021 13
Light-up in green initiative Almost every County Council demonstrated solidarity in support of Organ Donor The Mansion House, Dublin Awareness Week with 91 public sites throughout the country 'Lit Up In Green' from dawn to dusk for the campaign’s week-long duration. Sites included Dublin’s Convention Centre, the Mansion House, public libraries, a town square, a bridge, church, monuments, and town halls and other public buildings around the country. The initiative captured the imagination of the general public prompting conversation about the life-saving gift of organ donation. Municipal District Office, Carrick-on-Suir Tullamore Town Square The 19 Arches Bridge, Arklow Swords Castle, Dublin Bray Town Hall Clare County Council Cavan County Courthouse St. Mary’s Church, New Ross Tullamore Library City Hall Cork Spire of Lloyd, Meath 14 IKA S U P P O R T S U M M E R 2021
Tramore Holiday Homes HOLIDAY HOMES RE-OPENING 2021 We could all benefit from a nice holiday after the months and months of daunting lockdowns and restrictions. Holidays are good for our general wellbeing and our mental health and it is nice to have something to look forward to. We have been working hard in the background to safely re- open our holiday homes this year, and we are delighted to announce holidays for Transplant and Peritoneal patients will happen this year. We will start to welcome patients from the 1st July onwards to the Kerry and Tramore holiday homes. Dialysis patients are also accepted, if Unfortunately, dialysis provision they can travel back to their home away from base will not resume until dialysis unit for dialysis treatment e.g. possibly late summer, depending on Tralee Holiday Home a haemodialysis patient attending Cork advice from NIAC for haemodialysis University Hospital (CUH) for dialysis patients. We appreciate how Priority will be given to first time treatment holidaying in Tralee, Co disappointing this will be for patients. holiday applicants and to families with Kerry could travel back to their dialysis The National Renal Office (NRO) has schoolgoing children during Summer centre at CUH for treatment. made an application for additional school holidays. funding to facilitate away from centre Please note: Holiday grants are no holiday dialysis. We will continue to longer automatically paid whilst on discuss this with the NRO. holiday. Financial support may be We will operate our holiday locations available from our Patient Support this year on a 5 and 7-night basis Manager, email: fiona@ika.ie or (Saturday to Thursday and Saturday to speak to your local branch. Saturday) as we implement longer The holiday application forms are cleaning routines and comply with available on our website at COVID-19 guidelines. www.ika.ie by clicking on the tab at Enhanced sanitation procedures and the top of the page titled ‘Our new practises have been implemented Services’ and then ‘Patient holidays’. for the safety of guests. We will Link below. continue to monitor all developments Your local branch secretary and your relating to COVID-19 and remain PD Unit also have forms or committed to ensuring a safe alternatively you can contact me by environment for guests. email at deborah@ika.ie Killarney Holiday Home We also request that guests adhere We will be ensuring an enjoyable to COVID-19 guidelines and this will be holiday experience amid the a condition of booking. There will also restrictions that prevail. be a number of other changes so, Have a lovely summer. Stay safe and therefore, please read the booking take care. form very carefully. For example, towels Deborah Cervi will not be provided. Holiday Coordinator Killarney Holiday Home - Treatment room ONLINE LINK: www.ika.ie/patient-holidays/ Killarney Holiday Home - Kitchen Tralee Holiday Home - Sittingroom Tralee Holiday Home - Master bedroom IKA S U P P O R T S U M M E R 2021 15
Denise with son Caeden (8) DENISE’S STORY HEART TRANSPLANT t was in January 2020, I went to received my first call for a new heart. apart and the only contact I had with my GP as I had swollen legs and It turned out to be a false call as I the outside world was through stomach and I was finding it very was not a suitable match for this Facetime. The hardest part was hard to breathe. He sent me to heart. I was not really too upset about knowing that my kids needed me and A&E in Portlaoise Hospital. From this news as it had all happened so there was nothing I could do about it. there I was sent to St James in Dublin quickly and I still needed time to get It was a really tough time for my for an Angiogram and it was then that my head around all of this situation husband Emmet as he visited me every I was told I had severe heart failure, that I had suddenly found myself in, single day and then went home to Cardiomyopathy and I would most and I still had to explain this difficult care for the boys while trying to hide likely need a heart transplant. My news to my sons. the huge stress he was under from all world was turned upside down. To say So, then started my long wait in of us. I was shocked would be an hospital. In total I was an inpatient in The staff in the critical care unit in understatement. I was never aware I the Mater Hospital for eight long and the Mater Hospital were amazing. I had any heart issues although it was in difficult months. As my heart was only really thought of them as my family. our family history. functioning at 10% this is where I had They went over and above to help me I was then transferred to the Mater to stay in the knowledge that the only in anyway that they could and I will be Hospital where they confirmed that I way I could ever leave was if I got a forever grateful for the love and would need a heart transplant and donor heart. support they showed me, despite that that I would have to undergo a series I found this all so difficult and I at times I was not the easiest of of necessary tests to identify my missed my kids so much. But in the patients (which they had to put up suitability to go on a waiting list for a early stages they could visit me with) while I was in that ward for half heart transplant. regularly. Then the restrictions around a year. It was somewhat ironic that it was COVID-19 hit and I was not allowed The hardest part for me was when on February 14th, Valentine's Day that visits anymore, except from my the second call for a transplant came, I was put on the transplant waiting list husband Emmett. and I got told that it wasn't a match for a heart, and that very night I This is when my world started to fall again. It was totally devastating for me 16 IKA S U P P O R T S U M M E R 2021
and I woke up about three hours later totally delighted with the new life a stranger had given to me. After four weeks I finally went home to my husband and kids. If my brush with death has taught me anything, it is that life is for living, and that is what I intend on doing. Life begins at 40, and never more so than for me as I'm 40 now with my new donor heart. I'm caring for my three sons and husband, walking every other day with my dog Max and enjoying the simple things in life and am grateful for every breath of fresh air I take. and my family. All that I wanted was Everybody needs to understand me but for my family also. to be home with my kids but it wasn't how important organ donation is and We would never have got through to be this time.My mind went through what better gift can you ever give any of this without the help from my a rollercoaster of emotions. anybody but the ‘gift of life’!! To my family and my in-laws. To my friends It was a case of third time lucky for organ donor family I cannot thank you who witnessed my despair and saw me. Finally, when I got my next call, enough and will be forever grateful for me cry, you helped me more than you the third, I don't know how, but I the new life you have given to not just will ever know. knew that this time the donor heart The love and support shown to us was meant for me and when it was from the people in the town I live in, confirmed the transplant was going from my two younger son's schools, ahead this time I was over the moon St. Patrick's Boys National School and but scared also. Coláiste Íosagáin, was really My husband Emmet was with me all overwhelming and I will be eternally that day and until I was wheeled into grateful to each and everyone of you. the operating theatre. I could see by Lastly, to everyone in the Mater his face he was terrified for me and so Hospital, from kitchen staff to the was I but I focused on the prospect of nursing and medical staff to the me being able to be home again with transplant team and surgeons who my kids, family and friends, and that performed my life-saving operation, I took away the fear for me. thank you from the bottom of my The operation took over six hours donor's heart. Given the current pandemic conditions, it is difficult for many Branches to hold AGMs. The Board has considered the position and outline the following arrangements: 1. Branches will defer their AGM until 2022. 2. There will be no election of Officers of branches or Board Directors this year. 3. Branches may replace Officers of branches and Directors who wish to stand down. 4. The existing Board and National Officers will remain in place for a further year. 5. This year’s National AGM will take place virtually on Saturday, September 4th, 2021. Further details will be advised in due course. IKA S U P P O R T S U M M E R 2021 17
I am Tomas Caffrey. I am 21-years-old TOMAS’S STORY LIVER TRANSPLANT and I received a liver transplant in 2020. When I was 17, I was suffering badly with stomach pain in 5th year in school. I thought it may have been because of a bad diet so I let it go for a while. After a month or two of putting up with it I decided that I should see someone about it. I talked to my mam and we went to my GP Dr Elaine Joyce. She was not happy with what she saw, and she set up an appointment in Clonmel hospital in Tipperary. Dr Claire O’Leary was my doctor there. She was brilliant. Soon after I had a colonoscopy, we discovered that I had Ulcerative Colitis. I did not really mind all that much, I was just glad to know what the issue was. After a while Dr O’Leary seemed to think there was something more as I had told about my itchiness. She scheduled a liver biopsy for me in July 2017. After finding out the results of the biopsy I was diagnosed with Primary Sclerosing Cholangitis (PSC). PSC is a chronic liver disease, and it causes problems in the bile ducts which eventually can cause serious problems for the liver, in some cases people need transplants – I was one of them! It was a bit of a shock to hear but as a 17-year-old lad it did not get me down much. I had no real flare-ups from the PSC and apart from itchiness and a lack of energy I felt like I could carry on like anyone else my age. I always had good support from my friends in school who were always there for me. When I was coming to the end of my Leaving Cert year, I began to see some effects from the PSC. In April of 2018 I started noticing the whites of my eyes changing to yellow followed by my skin. I went to Clonmel hospital, but it was clear after blood results that I should be transferred to the wonderful St. Brigid’s ward in St. Vincent’s University Hospital in Dublin. I had very bad jaundice and spent around a month in hospital. When I spent time in hospital, I never allowed it to get the better of me. Positivity is key when going through something like this. I always walked around the ward and would go down to the shop without a bother. I would then see people who may not be able to get out of their bed and I felt I had no right to let myself get down about my condition because there was always someone worse off than me. Near the end of 2018 is when I started to see a problem again. In the run-up to Christmas I could see my jaundice was coming back, and I knew I had to go to 18 IKA S U P P O R T S U M M E R 2021
me too much as I knew that my doctors had my best interest at heart, and they were going to find me the perfect match. When COVID-19 began in March 2020 we joked at home about how handy it would be if we got the call during lockdown as it would mean that I could get everything done while the world is at a stop. Then on the morning in early June the call came. We were always prepared for this moment. I never allowed myself to get my hopes up as I knew that the liver may not work out. We headed for Dublin that morning. As expected, I had lot of scans and tests to do. It was a long day but the (L-R): Saoirse Caffrey, Tom Caffrey, Tomas, Jane Ryan longer it went the better I felt about and Oscar Caffrey (front). Tomas evening after he had his transplant that morning. the chance of this working out. I can Dublin. It was clear that there was an honestly say the entire day I never felt was able to go back home that day. issue, and I was admitted. nervous, only pure excitement. I knew Things began to get better and better The jaundice showed no signs of this was my new beginning and I was as the weeks went on. going away and after talks of possibly ecstatic. I am now nearly a year post- getting a stent it was decided that I At close to midnight it was finally transplant and I truly feel like a new would need a biliary drain. I initially time to head to surgery. As I went man. I have so much more energy in thought the worst but after the down, I could not believe it was all everyday life. Before the transplant I situation was explained it seemed like actually happening. I walked into the used to spend my night up because of the best option. operating room and I knew that this the most horrendous itch and I would I had a drain fitted on 11th January was it, it was going to happen, and all be drained of energy every day but 2019, this helped drain my liver and the hard work was done and time to from the minute I woke up from my so the jaundice slowly went. They told leave it to the professionals. My transplant my itch was gone and over me that this might only last a little operation started at 12.40am and the weeks after my transplant my while but, hopefully, it would help finished at 6.10 am – so much quicker energy started to improve. long-term. I never was ashamed of than they thought it would take. It has changed my life for the better having a tube coming out of me. In The first couple of days are very and it’s all thanks to the amazing those situations you must be hazy. When I left ICU it began to get people in St. Vincent’s hospital and confident. I took pride in my drain and harder. I knew it would get worse Clonmel hospital. I had a heavy few I would never be shy about talking before it got easier. I was in a good bit years but I also had some of the best about it. A few days later I was put on of pain which was expected but on years of my life. the liver transplant list and that started day five I began to see the light at the If I could give any piece of advice the big waiting game. end of the tunnel. I started to feel like for anyone who is going through The drain was not always the most myself again. I was making something like this, it would be to not convenient, but I dealt with it. I had conversation and even started getting let it take over your life and see the appointments every six weeks in up a small bit. I was hesitant to start brighter side to life. radiology to get my drain changed. I getting out of bed, but I knew it was I will be grateful every day to my got used to it after a while and it just my best chance of recovering quickly. donor. became normal. The drain kept me After ten days I out of hospital apart from when I got was fit enough to go the chickenpox. home. I could not In February 2020, my mam got the believe how quick it call from St. Vincent’s Hospital just was. I was feeling after 6 in the morning. I was in great and looking Athlone at College and my mam was forward to getting in Tipperary, but we were organised back to my own bed. that if this happened my mam’s I had very little cousin, who lives in Athlone, would complications in the collect me and meet her at the weeks after. I had hospital. ascites, which is an We all got there with no problems abnormal build-up of and I had to have bloods done and fluid in the abdomen, then we were waiting for a little and we travelled back while. We were then told that the liver up to Dublin and they Tomas (10) at training was not viable. It did not dishearten sorted me out and I IKA S U P P O R T S U M M E R 2021 19
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