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– SUMMER –

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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
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                                     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
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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
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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
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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
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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
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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
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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
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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
5 x €100 vouchers - SUMMER- SEE
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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