Service of Remembrance - and Thanksgiving will be broadcast on RTÉ One television and - Irish Kidney Association
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The first virtual
35th Annual
Service of Remembrance
and Thanksgiving
will be broadcast on
RTÉ One television and
RTÉ Radio One Extra (LW252)
on Sunday 15th November
at 11.00am
EDITORIAL
Some initial thoughts on
entering my new role
I
feel extremely honoured to be appointed as your new
CEO. Many years ago, a family member experienced
kidney failure and we benefited from the services of the
Irish Kidney Association (IKA), so I have had a particular
interest in the work of the IKA since that time.
Thanks to my predecessor Mark Murphy, (full tribute page
30-33) I join a high-profile organisation which has
consistently had much more influence than its size would
suggest in supporting patients with end stage kidney disease
and their families. This is due to the excellent staff and the
huge number of committed, energetic and passionate
volunteers.
On my first day, I participated in the recording of the
Service of Remembrance and Thanksgiving for TV in Newman
Church. This was a marvellous introduction into the real heart
of the IKA. It was an exceptionally moving and emotional
experience. You can read the full report on page 5-7. Not
many people are privileged to have the benefit of such a
meaningful first day in a new role.
We live in an incredibly challenging time. COVID-19 has
impacted both our physical and mental health. People with kidney disease are particularly
affected. From previous experience of patients who are medically compromised, I can fully
understand the challenges faced by kidney patients when suddenly having to adapt from
living a somewhat normal life to having to accept further vulnerability and restrictions.
However, the best minds in the world are working on solutions, but it is likely we will still
have to live with this virus for some time. It will also continue to impact our activities as a
patient-centred organisation. For example, our Support Centre continues to be sequestered by
Beaumont Hospital, (refer to article on page 9).
Of most concern is the fact that organ transplant figures are disappointing – particularly,
when we see the progress being made in Northern Ireland where two thirds of the waiting list
has been cleared – albeit under a different and unique structure than we have here.
We are also faced with increasingly onerous regulations, which also have a cost. However, it
is right that we be both transparent and accountable to our members and to the people who
so generously donate their time and money. Not only must we continue to be of assistance to
our community, but also the positive impacts and results of our activities must be seen. Our
Board, which is representative of all our Branches, has a key role to play in this regard.
We must make sure that we are focussing on the needs and priorities of people with kidney
disease and ensure that we understand what these needs really are. We must remember the
needs of those patients on long-term dialysis and some of those patients whose specific
health circumstances prevent them from hope of an organ transplant. We have to ask
ourselves where our major priorities lie: should they be in improved healthcare, easier access
to home dialysis and increasing organ donation, or are better Government disability supports,
patient aid, mental health services or supports to return to work more pressing priorities?
I look forward to working with you to hear your views.
Our new Strategy Plan is nearing finalisation. It will have a strong focus on delivering high
quality services to both Members and Branches at a reasonable cost. The world of information
technology and digital health presents many opportunities for us to help our members more
effectively. While this will initially require more expenditure, it will ultimately enable us to
reduce the annual income deficit, while improving services in the longer term.
IKA people work closely with healthcare professionals. Often, we have filled a gap in
2 IKA S U P P O R T A U T U M N 2020
healthcare systems by providing
2 EDITORIAL
CONTENTS
resources and information. While we
will continue to collaborate closely 4 NEW IKA CHIEF EXECUTIVE OFFICER
with all health care professionals, we
also need to maintain our 5 35TH ANNUAL SERVICE OF REMEMBRANCE & THANKSGIVING
independence and become an even 8 EUROPEAN DAY FOR ORGAN DONATION & TRANSPLANTATION
stronger advocate and effective
campaigning organisation for our 9 RENAL SUPPORT CENTRE
members. We will work closely with 10 DUCKS QUACK FAREWELL TO ETDSC
Irish and International organisations
working to improve the lives of those 12 CHAMPION DANCER PLEDGES 18TH BIRTHDAY FUND
with kidney disease. 13 BILLION STEPS CHALLENGE
We are already faced with many
healthcare issues. These range from 14 TO SCHOOL OR HOMESCHOOL
ensuring that we minimise the 16 MAINTAINING OUR MENTAL HEALTH IN TOUGH TIMES
impact of COVID-19 on our renal
community to advocating for an 18 PEER SUPPORT
increase in the number of transplant 20 LIFE IN LOCKDOWN
operations. From coping with the
effect of the eventual enactment of 22 EMERGENCY SURGERY TO SENIOR HURLING
the proposed Human Tissue Bill and 25 SOCIAL MEDIA & COMMUNICATION
the development of Sláintecare to
advocating for the automatic setting 26 TRANSPLANT LADIES HAVE IT ALL SEWN-UP
up of dedicated renal hospital wards 28 “AN APPLE A DAY KEEPS THE DOCTOR AWAY”
once patient numbers reach a certain
level at an individual hospital. 30 TRIBUTE TO MARK MURPHY
So, there are plenty of challenges, 34 3 DAVES RUN VIRTUAL BOSTON MARATHON
but we are very fortunate to have an
active community, and, thanks to our 36 CARLOW’S GALS AROUND THE GLOBE
extremely generous benefactors and 37 CELEBRATING 17TH ANNIVERSARY OF SECOND TRANSPLANT
branch fundraising, we also have the
capacity and potential to make the 38 TEARS OF DELIGHT FOR LAUREN
IKA an even stronger and more 40 POOCHES UNITE WITH RORY’S STORIES FOR FUNDRAISER
effective organisation.
Once we update the Strategy Plan, 42 JASPER THE ROOKIE KIDNEY
with your input and after Board 44 BAKER RAISES DOUGH FOR CHARITY
approval, we will be arranging a
special launch event to tell you about 46 AROUND THE BRANCHES
our new strategy. 58 MEMBERSHIP FORM
I am excited to be in my new
position as CEO of this significant 59 BRANCH SECRETARIES
organisation, and I am confident that 60 CHRISTMAS CARDS
by working together we can make an
even bigger difference to the lives of FRONT COVER
those affected by kidney disease.
Donor mother Sallyanne
I could not finish without
acknowledging, once again, our Clarke, Prof. Jim Egan, ODTI,
heartfelt gratitude, appreciation and The first virtual
and Revd. Gary Chamberland
35th Annual
thanks to our donors and donor Service of Remembrance
and Thanksgiving
filmed by cameraman
will be broadcast on
families. It is only their exceptional RTÉ One television and
RTÉ Radio One Extra (LW252)
ber
Seamus Callagy of Kairos
on Sunday 15th Novem
generosity, often in times of great
at 11.00am
Communications at Newman
personal tragedy, which continues to University Church, Dublin 2
make the ongoing life-saving work of for the pre-recorded Irish
organ transplantation possible. This is Kidney Association's
truly the ‘gift of life’. 35th Annual Service of
Remembrance and
Thanksgiving for broadcast
on RTÉ One and RTÉ Radio 1
Extra on Sunday, 15th
November at 11am.
CAROL MOORE Photo: Conor McCabe
CHIEF EXECUTIVE OFFICER
IKA S U P P O R T A U T U M N 2020 3
THE IRISH KIDNEY ASSOCIATION APPOINTS
Carol Moore as new Chief Executive Officer
CAROL’S CREDENTIALS...
Carol Moore brings to the Irish Kidney
Association (IKA) her considerable experience
in healthcare, education, telecoms, and
not-for-profit organisations delivering
community services.
Carol is a fellow member of Chartered
Accountants Ireland with over 30 years’
experience working in the private and public
sectors in management consultancy roles.
She holds a Masters in Psychology,
post-graduate qualifications in social science,
education and psychometrics and she is a
qualified mediator.
Just before taking up her new role with
the IKA she was a co-founder of LIFEWISE, an
online alcohol harm reduction service as well
as Governance Manager with Mental Health
Ireland, the national Mental Health
Carol Moore and Colin Mackenzie. Photo: Conor McCabe Photography Organisation with member branches all
around the country.
She is also a co-founder of the registered
charity Dual Diagnosis Ireland, the
O
n behalf of all involved with the IKA, it is my pleasure organisation for people who have the
and privilege to welcome our new Chief Executive co-occurring disorder of both mental health
Officer, Carol Moore. issues and substance abuse.
Carol, as a Chartered Accountant with a Masters in Carol also helped co-found Mental Health
Psychology, among other qualifications, and a former CEO Reform, the leading national coalition of
brings with her a wealth of administrative experience, mental health care in Ireland which has over
70 member organisations. She was a
especially suited to the current needs of our Association.
non-executive director with CORU, the state
We look forward to working with Carol through this agency regulator for multiple health and
challenging period, and are confident that present difficulties social care which promotes high standards
in communications, due to the current pandemic, can be among health and social care professionals.
overcome. Carol lives in Rathfarnham, Co Dublin with
Carol's already apparent dedication to the welfare of Caitríona, the youngest of two daughters,
patients and carers, together with new approaches and who works in fundraising for Movember, the
global men’s mental health charity. Her eldest
supported by our dedicated staff gives us great optimism for
daughter Sarah works as a Speech and
the future. Language Therapist in New Zealand.
Carol, on behalf of myself and the Board and Staff, I offer Carol strongly believes in social justice and
you our support as we continue our endeavours to improve compassion for people experiencing hardship
the welfare of all kidney patients. and with her broad wealth of knowledge and
experience we look forward to having her at
COLIN MACKENZIE the helm guiding our Association through
these challenging times.
Hon. Nat. Chairman
4 IKA S U P P O R T A U T U M N 2020
The Irish Kidney Association's first virtual and
35th Annual Service
of Remembrance and Thanksgiving
will be broadcast on
RTÉ One television and RTÉ Radio 1 Extra (LW252)
on Sunday, 15th November, 2020 at 11.00am (GMT)
and available to view on RTÉ Player www.rte.ie/player and on www.ika.ie
Previously recorded at
Newman University Church, Dublin 2
by Kairos Communications
During the broadcast you will be invited to participate in the
Service of Light ceremony by lighting a candle in memory of
organ donors who have given the precious ‘gift of life’ to others.
Sean Connelly
PRESIDENT, CLERGY, CELEBRITY & TRANSPLANT COMMUNITY
UNITE FOR TELEVISED EVENT HONOURING ORGAN DONORS
First Virtual
35th Annual Service of Remembrance
and Thanksgiving
T
he IKA promises a truly candle will be lit in memory of
People from all walks of life and
special and poignant Service deceased donors who gave the ‘gift of
beliefs, united in their wish to honour
for people of all beliefs which life’. The Service will be led by two
organ donors, are encouraged to come
together for the Irish Kidney is laced with beautiful music members of the successful Transplant
Association’s 35th Annual Service of and symbolic processions, Team Ireland, liver transplant recipient
Remembrance and Thanksgiving which readings and messages from Deirdre Faul and Team Captain Harry
will be broadcast on RTÉ on Sunday, the President of Ireland and two Ward, a kidney transplant recipient.
15th November 2020 at 11am. This will Archbishops, and other celebrated The ‘Book of Remembrance’, a ‘Roll
be the first time for the inter- members of society, who are all of Honour’, has been an integral part
denominational Service to go virtual, invested in acknowledging deceased of the Service since its inception with
transitioning from a previously large donors and their legacy, the ‘gift of the names of organ and tissue donors
in-church congregation of 2000+ to a life’. This Service is a mixture of carefully inscribed by calligrapher
broadcast production by Kairos sadness and joy for the families of Annette Daly from Glenageary, Co
Communications which will feature on organ donors and transplant recipients Dublin for the past 35 years who also
RTÉ One and RTÉ Radio One Extra alike. For many donor families this features.
(LW252). It will also be available to unique annual Service has become an This year’s Service includes a special
view on RTÉ Player (www.rte.ie/player) anniversary to both remember their message from the President of Ireland,
and on www.ika.ie loved ones, and for transplant Michael D. Higgins, Patron of the IKA,
recipients, the opportunity to which pays homage to deceased
honour and give thanks for organ donors and their families.
the wonderful ‘gift of life’ Grateful transplant recipients
they have received. including heart, lung, liver and kidney,
The IKA is asking the and members of deceased organ
public to actively participate donor families, have been filmed
in this year’s Service, carrying out various symbolic roles for
especially during the very the pre-recorded Service.
symbolic Service of Light The inter-church Service was
ceremony, when it is hoped recorded at Newman University
that, in households the Church, Dublin 2, in October with
length and breadth of the celebrant Rev. Gary Chamberland and
Fr. Finbarr Treacy working on camera shots
country and beyond, a Archbishop Michael Jackson delivering
6 IKA S U P P O R T A U T U M N 2020
the Homily. Archbishop Diarmuid
Martin shares a Reflection. Music at
the Church is directed by Steven
Warner, Associate Director, Newman
University Church and involves the
widely revered cantor Dr. Sharon Lyons
and music by the Vocare Ensemble.
There is a special inclusion from the
‘Circle of Life’ Commemorative
Garden for organ donors in Salthill,
Galway with Eleanor Shanley singing
accompanied by classical guitarist
John Feeley. They are watched on by
the Garden’s creators, Martina and
Denis Goggin, the parents of a
deceased donor, and some grateful
transplant recipients.
Among those filmed at Newman
University Church, is Sallyanne Clarke,
Fr. Finbarr Treacy,
the mother of deceased donor Producer, Kairos Communications
Fr. Gary Chamberland from different camera views
Andrew who was baptised in the
same church. Sallyanne and her Sunday, 15th November to watch the evolved from a grieving organ donor
husband Derry run the Michelin star Service, which was filmed in the mother who contacted the IKA in
L’Ecrivain Restaurant in Dublin. Alan magnificent setting of Newman their first office in Monkstown, Co.
Finnegan, delivers a testimony about University Church and at other Dublin. The mother expressed her
the profound impact of the passing of locations, amid COVID-19 distress and sadness that her son’s
his late brother, deceased donor Paul, restrictions.” organ donation had never been
the chef, who famously prepared a Producer Fr. Finbarr Treacy, from acknowledged. At the time there was
meal for Michelle Obama and her Kairos Communications and Steven no system in place at the Old Jervis
daughters when she visited the family Warner, Associate Director at Street Hospital to acknowledge and
pub in Dalkey, Co. Dublin. Newman Church, worked closely with thank organ donors and their families.
Senator David Norris, who the IKA’s Liturgy committee, who In consultation with the then newly
underwent a liver transplant, recites were involved in its planning and appointed National Transplant Co-
Seamus Heaney’s poem, ‘The Miracle’, content and they include:- Colin ordinator, Phyllis Cunningham, it was
at Newman University Church. Majella Mackenzie, IKA Honorary National decided that a Service be held to
O’Donnell, whose mother had Chairman (Dublin), Lorraine Costello, publicly acknowledge and recognise
experienced temporary kidney failure, Patient Support Officer (Dublin), the courageous generosity of organ
sends a message of encouragement Gwen O’Donoghue, IKA PRO, Board donors and their families. The
from her home in Donegal. Members members Valerie Brady (Meath), Joan inaugural Service, in 1986, had an
of the medical profession Dilly Little, Gavan (Tipperary), Monica Finn attendance of 300 people in St Mary’s
Transplant Surgeon and Surgical (Roscommon) and Pat May (Carlow). Church, Haddington Road,
Director of the National Kidney The flowers which adorn the church Ballsbridge. Since then, the numbers
Transplant Service and Professor Jim altar were arranged by Una Whelan have increased annually with an
Egan, a lung physician who is the (IKA Dublin East+Wicklow). attendance of over 2000 people now
Director of the HSE’s Organ Donation The concept for this Service attending from all over Ireland.
Transplant Ireland, also feature. Transplant Surgeon Dilly Little
Speaking in advance of the Service, being recorded by Ita Callaghy
IKA Hon National Chairman, Colin at the monument
for organ donors
Mackenzie, explained, “This Service at Beaumont Hospital
embraces people from all walks of life by production company
Kairos Communications
and all beliefs including humanists. It for the virtual
is a hugely important event on the Service of Remembrance
annual calendar for many donor and Thanksgiving
families and transplant recipients as
well as for the wider community,
including donor and transplant
coordinators and medical, surgical and
nursing staff. We are confident that
our first virtual Service provides a
worthy and fitting replacement to the
traditional church event that has been
taking place since 1986. We sincerely
hope that people from home and
abroad will tune in to RTÉ at 11am on
IKA S U P P O R T A U T U M N 2020 7
EUROPEAN DAY FOR
ORGAN DONATION AND
TRANSPLANTATION (EODD)
‘The one bright light
in a very dark time’
he aim of the day is to promote centralised database where the public can
This year the
European Day
for Organ
Donation and
T awareness of organ donation in
Europe. It is an opportunity to
honour all organ donors and their
families and to thank
transplantation professionals throughout
Europe whose hard work helps to save lives
register their wish to be an organ donor –
unlike in Ireland. In 2015 Wales introduced
a Soft Opt-Out system which necessitated
the addition of a ‘No’ option to their
national registry. Any successful public
awareness campaign needs a clear ‘call to
Transplantation and improve the quality of life of many action’ that gives the public the opportunity
people. to engage and respond and having a
(EODD) was There is a specific focus on the YES/NO Registry allows for this.
importance of making one’s own wishes on Last year in Ireland, 274 organ transplants
held on organ donation known to families and next were carried out. 153 kidney transplants
Saturday of kin. The day is also an opportunity to pay were performed at the National Renal
tribute to all the deceased and living donors Transplant Service at Beaumont Hospital, 25
10th October. who have helped severely ill patients to of which were living donor transplants. 66
regain a normal life. liver transplants occurred at the National
In Ireland, the Organ Donor Card has Liver Transplant Service at St Vincent’s
been the national ‘Call to Action’ since it University Hospital, and 38 lung transplants
was first introduced by the Irish Kidney and 15 heart transplants took place in the
Association over 40 years ago. The card National Heart Lung Transplant Service at
continues to be the public prompt to the Mater Misericordiae University Hospital.
encourage the family conversation – this is Organ donors are at the centre of the
why it has the space for the next of kin success that is transplantation. Whilst we
signature. We took this into account when are all aware of the need for organs, we
developing our Digital Organ Donor Card must also look at organ donation from the
App in that the sharing of your wishes with donor’s perspective. It is the potential to
family and friends is at its core. leave a legacy to your family. Many donor
Whilst our European neighbours have families have described the donation as ‘the
organ donor cards, they also have a one bright light in a very dark time.’
8 IKA S U P P O R T A U T U M N 2020
RENAL SUPPORT CENTRE
will continue to be used by
Beaumont Hospital until October 2021
A
s members know in
the early days of the
pandemic, Beaumont
Hospital officially
sequestered (legally took
over) the Irish Kidney
Association’s Renal Support
Centre at Beaumont for use
during this COVID pandemic.
I visited this wonderful
centre and talked online to
the Support Centre staff. I
can really appreciate the
enormity of the temporary
loss of the Centre. It is not
just a roof over people’s
heads, away from a sterile
hospital environment, but a
place of comfort, safety and
warmth. It is a place where
patients and their families
can relax together, have a
cuppa, cook their own
meals, talk to staff who are
also patients, and also chat
to other families
experiencing the same
struggles. Strong and lasting Centre cannot be operated of bringing the Centre up to up a sub-group to develop a
relationships are formed in the current COVID hospital infection control plan for the return of the
there. This “peer support”, pandemic environment. This standards. They are also Centre and also the
as the professionals call it, is is because the Centre was paying for patients to stay in development of our Cork
a vital part of the IKA not built to conform to a nearby hotel, the Clayton property and we will be
community and the Support hospital level infection Hotel. So, when the Centre bringing in various volunteer
Centre is our crown jewel. control standards. This is returned to the IKA in experts to consider how best
This COVID pandemic has means that any patient October 2021, we then to do this.
broken many of these staying in the Centre would anticipate (subject to expert For patients who would
connections, but hopefully be at increased risk of health advice) to be able to normally have stayed in the
only temporarily. infection. Additionally, the safely operate the Centre Support Centre, alternative
The IKA have had staff (who are also patients again, without incurring the accommodation, which
considerable discussions with in a high-risk group) considerable upgrade costs. includes bed, breakfast and
Beaumont Hospital operating the Centre are also We really understand the parking, has been arranged
Management on their very at increased risk of harm. As fact that people will be upset with the nearby Clayton
urgent ongoing requirement a responsible employer, we by the temporary loss of the hotel which can be accessed
for the Centre. The IKA cannot expose our Centre, but we believe we from the M50. Members
Board itself debated this committed and valued staff had no other course of should phone Patricia, Frank
issue at length. to increased infection risks. action in these very difficult or Simon at 087-4169907
A major factor for the Beaumont Hospital is now circumstances. for bookings.
Board, was the fact that the paying the considerable cost The IKA Board is setting Carol Moore, CEO, IKA
IKA S U P P O R T A U T U M N 2020 9
2020 EUROPEAN TRANSPLANT & DIALYSIS SPORTS CHAMPIONSHIPS
Ducks quack farewell to ETDSC
which fell ‘fowl’ to pandemic
W
ere it not for COVID-19,
Sunday, August 9th would
have marked the final day of
what would have been the largest
international organ donor awareness
event this year and held in Dublin –
the 2020 European Transplant &
Dialysis Sports Championships
(ETDSC).
500 participants, including heart,
lung, liver, kidney transplant recipients
as well as dialysis patients and
supporters, from 30 nations, would
have been saying farewell to the
week-long 11th ETDSC 2020. The
Championships were due to begin on
August 2nd and organised by the Irish
Kidney Association (IKA) but had to be
cancelled due to the pandemic.
To mark the cancelled
Championships, which are a
celebration of life through sport, two
grateful Irish transplant recipients and
members of Transplant Team Ireland
were joined by a kidney donor father
and his transplant son who enjoyed
the fun and frolics of a virtual
international Duck Race. The Duck
Race, involving 30 green ducks, each
with their nation's flag colours on
their plastic plumage, was held at a
10 IKA S U P P O R T A U T U M N 2020PHOTOS BY CONOR McCABE PHOTOGRAPHY
Harry Ward Sam and Ivan Kinahan
water feature beside the IKA's head office at Donor House Kinahan (5) from Baldoyle.
in Dublin's Park West. Ivan who had returned to work since donating a kidney
A video of the event was shared online via YouTube with to Sam last June had taken this week off work for the
the 30 nations (link https://youtu.be/cEBDcKAhZzU). A Games and had planned to take part in a Donor Race for
Slovenian duck won convincingly followed by Germany in families of deceased organ donors and living donors.
second place and Cyprus third while Ireland's duck bobbed Harry said, "we are sad that our Championships in
along behind. Dublin this year were called off but, in the true spirit of the
Team Ireland Captain Harry Ward, from Baldoyle, Irish team, we made sure that at least some fun was to be
underwent a kidney transplant 13 years ago while had. We hope one day again we can say a Céad Míle Fáilte
newcomer to the team Simon Keegan from Dublin 1, who welcome to Ireland. We should have been celebrating with
was on life support before undergoing a heart transplant competitors and supporters from all over Europe to Dublin
two years ago observed with father and son Ivan and Sam this week for the 11th European Championships.”
Simon Keegan
IKA S U P P O R T A U T U M N 2020 11CHAMPION DANCER PLEDGES
18th Birthday Fund
Katie and Matt McAlevey at their home our appreciation to Jackie and the staff
the day after Katie's18th birthday. at the Beacon in Drogheda for taking
(Photo by Andrew Spearman)
such good care of my dad when he
was receiving dialysis treatment and
also to the transplant and nursing
team at Beaumont Hospital who took
care of him when he received his
transplant.
“When he got his transplant last
year, I could see the difference in him
straight away, it was like night and
day. He has a much better quality of
life now. We are making the most of
having him stay at home with us. He
has much more energy now and his
complexion looks so much healthier
now also. Unfortunately, after COVID
lockdown, he has had to close the
M
arking an 18th birthday for was a success for a long time, and business because of all the restrictions
many young women means even though it eventually failed, my on pubs, as well as the fact that
glamming up for a big family are very grateful to his first because he is a transplant patient and
celebration and being gifted kidney donor for giving him a lifeline immune suppressed and must be
with an abundance of presents, part and eighteen good years to enjoy life, extremely careful.”
and parcel of what is expected for get married, run a pub and have a Katie and her sister Holly (16) are
their coming of age. However, for a family. 6th and 5th year students respectively
young Dundalk woman, who “His second transplant took place in at St. Vincent’s Secondary School in
celebrated this milestone birthday May 2019 because of another selfless Dundalk. They are both world dancing
amid pandemic restrictions, on Sunday organ donor. Before this transplant, champion medallists from the hugely
11th October, she had a different for six years he had to have dialysis successful dancing school Scoil Rince
perspective. and attend the Beacon in Drogheda Mona Ni Rodaigh. Katie and Holly as
Katie McAlevey from Drumcar said, three times a week for his treatment. solo dancers have been placed among
“I am just grateful to be able to share For most of my teens my father has the top-30 finalists from all over the
my 18th with my family and especially been struggling with his kidney failure world every year for almost a decade
my father whose quality of life has and even though he managed to keep while also winning the coveted World
improved considerably since his kidney running the family pub in Champion title as part of the 8-hand
transplant last year. That’s why, instead Castlebellingham, he had very little reel team. This year would have been
of getting presents, I want to help energy and poor quality of life. Even their 10th year to take part in the
highlight organ donation and raise when he was having a difficult time, World Dancing Championships which
funds for the Irish Kidney Association he always remained upbeat. With the would have taken place in Ireland
through a Facebook fundraising little energy he had, he still made the were it not for COVID-19. Katie and
platform.” Katie's fundraiser has effort to travel around with me and Holly’s younger brother Mark (12)
already raised over €1400 for the my sister as we competed in dancing doesn’t share his sisters’ passion for
charity. competitions in different parts of the Irish dancing, he is a keen footballer
Dancing since she was three years world while organising dialysis playing with his local club, Rock Celtic
old Katie is a world champion Irish treatment wherever we would go. He in Blackrock.
dancing medallist. She is the oldest of also was on the sidelines to support Katie who is now in her final year of
three siblings and daughter of my younger brother when he played school is undecided about whether
publican Matt and nurse Ciara football. He helped raise €4500 for she should pursue a career in nursing
McAlevey. Katie explained, “my father the IKA through fundraisers he ran in or as a primary school teacher when
has had two kidney transplants in his the pub while he was on dialysis. I am she leaves. However, she explains “the
lifetime. He received his first transplant proud of my father for the way he has one thing I do know is that were it not
when he was 30 years old before he lived with his kidney condition and I for organ donation my father may not
married and it lasted eighteen years. am also proud for the families of his be here and I felt very fortunate to
That’s the same length of time that I kidney two donors. have him around to share with me in
have been alive! His first transplant “Our family would like to express celebrating my birthday.”
12 IKA S U P P O R T A U T U M N 2020BILLION STEPS CHALLENGE
T
he Billion Steps Challenge is WHAT IS THE BILLION STEPS people, with the aim of walking and
an opportunity for everyone CHALLENGE? exercising regularly and counting those
(including family, friends and • The Billion Steps Challenge aims steps to add to a collective total.
even nurses, doctors and hospital to encourage everyone in the • We are partnering with MoveSpring, an
staff!) to get involved in a global wider transplant community to online fitness platform which integrates
programme that is aimed at take the first step towards a life of with most fitness trackers, however
encouraging people to be active activity and movement. manual entries will also be an option for
and also to talk about organ • Regular exercise not only benefits those who do not have a fitness tracker.
donation. physical health but also boosts • All physical activities count and can
You can find out more, and how mental well-being. be converted to steps with our
to sign up here: • We want to show the world that Activity to Steps Convertor guide.
www.wtgf.org/Billion-steps- those living with a transplant are This means a cycle, swim or yoga
challenge serious about their health and the class can all be easily converted to
precious gift they have been steps. Every step counts!
IT’S FREE AND OPEN TO given. What better way than to • The challenge is open to everyone. Teams
EVERYONE! walk a collective billion steps to can be made up of many different
The Challenge is taking place the moon and back? combinations including, but not limited
now and the collective goal is to • The Billion Step Challenge invites to, transplant recipients, medical
reach a total of one billion steps everyone to sign up into small professionals, living donors and donor
between now and December 13th. teams of between 2 and 5 families, friends, family, colleagues and
neighbours.
• There is no age limit and no experience
needed. It starts by taking the first step
to a more active and healthy life.
WHAT’S IN IT FOR ME?
• A healthy lifestyle is important for
everyone, but it is especially important
after an organ transplant. Poor lifestyle
habits can increase the risk of organ
rejection.
• The Challenge is designed to motivate
transplant recipients to get active. We
also recognise the benefits for the entire
transplant community.
• COVID-19 may have kept many of us
apart with restrictions on social
interactions and travel but this challenge
allows us to come together as a
community, promote organ donation and
transplantation and get active.
• This challenge is part of the greater
Fit for Life! initiative which is designed
to help transplant recipients live full and
active lives through ongoing physical
activity and participation in organised
sports.
• This challenge aims to motivate everyone
in a fun and interactive way to exercise
within their means, starting with some
simple goals, such as walking around the
block and building towards more
ambitious goals.
• There is a great interactive chat facility in
the App which opens up the opportunity
to connect with others around the world!
Contact colin@ika.ie if you have any
questions.
IKA S U P P O R T A U T U M N 2020 13To school or
Pranathi O’Donovan
homeschool
That is the question..
for transplant children
Pranathi with her
mother Anne Marie
RTÉ One TV News and children’s TV news transplant child, has been were advised that, if
getting on with her home possible, we should seek to
News2day, covered a story at the beginning schooling through her homeschool her rather than
of September on the dilemma and parents who are also returning to school as her
working from home. immunosuppression regime
uncertainty around children who are health Anne Marie said, would increase her risk of
compromised returning to school. “Pranathi will be four years COVID infection should
post heart transplant in the positive cases present within
E
arlier in the year, the featured two lively Spring (2021) and since her her school or social
then Taoiseach Leo transplant recipient girls transplant she is doing contacts.
Varadkar announced from Waterford, one a heart amazingly well, full of “Pranathi is doing very
the sudden closure transplant recipient and an energy, happiness and well with her home-
of all schools from only child, who didn’t return health. Paranthi's care is schooling routine. Each
the 12th March which was to school while the other jointly managed by the morning she has a zoom
to continue until the 29th girl, who had received a Children's Heart Centre in meeting with a Newtown
March to help combat the combined liver and kidney Crumlin and Great Ormond Junior School liaison teacher
spread of COVID-19. transplant, returned to Street, London. Throughout and is working away on all
However, as the prevalence school along with her two the COVID pandemic she the usual school subjects
of the virus continued to siblings. has been very fortunate to albeit remotely. She loves
escalate, the government Almost two months since have had the very best of being able to go to the
ruled that children should their appearance on RTE we medical advice as to how skate park for her 11 o’clock
not return to school until checked in on their progress her family should keep her break and the biggest
after the Summer holidays. just before schools’ mid- safe and reduce exposure to positive of homeschooling is
Pupils and parents tried to term break. Coronavirus risk. that we have promised not
adapt to the new normal for Anne Marie Lally and her “Our family cocooned to give homework!
learning, homeschooling, husband are both lecturers throughout the first “There is no doubt that
during the extended hiatus. at Waterford IT. Anne Marie lockdown and maintained arts and craft have been a
As schools re-opened in described how their only a very small number of super fun element of
September RTE News, daughter Pranathi interactions since then. In homeschooling and the
facilitated by the IKA, O’Donovan, a heart August as her parents we good autumn weather
14 IKA S U P P O R T A U T U M N 2020Lexi and sister Ali Lexi with her mum Kim
and dad Declan at the
national launch of Organ
Donor Awareness Week
in 2017.
presented lots of happy for her to continue
opportunity for nature walks going to school. Thankfully
and outdoor learning. any of their young liver
Pranathi recently had her patients between Ireland
annual flu jabs and we are and the UK that have tested
all hoping that her next positive for COVID-19 have
vaccine will be a COVID recovered well. The school
vaccine so that she'll be able has been great in keeping
to get back to school, family me reassured that all public
visits and lots of playtime guidelines are being
with her friends.” followed. Obviously, Lexi
Lexi Murphy (10) herself was already so used
underwent a combined liver to the importance of good
and kidney transplant in hand hygiene so she
Birmingham in 2016. After continues to be extremely
much consultation between happy to stay going to
her parents, Kim and school.”
Declan, and her medical Pranathi embarked on a
team and consideration to 100km cycle challenge,
the complication of having starting on 30th July cycling heart failure four years faster, I want to raise money
two siblings who would be a 10km distance on ten previously. for Ronald McDonald House
attending school, it was different days within a On her online fundraising so that all families with sick
decided that Lexi should month. She raised an platform IDONATE she children can stay together
return to National school impressive €4500 for explained her motivation. “I and have a home away from
along with her younger Ronald McDonald House was very lucky to get a home as long as they need
sister Ali (6). It was also where her parents had wonderful donor heart three it.”
important that her older stayed to be near her when years ago and now that I'm Well done Pranathi and
brother Dillon (15) returned she became gravely ill with able to cycle farther and Lexi!
to school as he is in 3rd year
preparing for his Junior
Cert. Kim who works as a
hairdresser has to be very
vigilant in ensuring that she
doesn’t carry the virus home.
On the RTÉ News feature
Lexi displayed impressive
flexibility with acrobatics on
and off the trampoline at
her home. In the almost two
months since returning to
school her mother Kim
explained “Lexi continues to
bounce around and is full of
energy and she loves
attending school. She has
been keeping great, thank
God. She was in Crumlin
hospital this week for a
routine check-up and a Pranathi on completing her fundraiser
scope. Her doctors are for Ronald McDonald House.
IKA S U P P O R T A U T U M N 2020 15Maintaining our
Mental Health
in Tough Times
I
n my last article I wrote about and vitally important that we do what we can
complimented the emotional to manage our own mental health.
resilience I see in so many of you The WHO, HSE and Mental Health
who are living with the uncertainty Ireland, have continually updated and
and unpredictability that comes with circulated a vast amount of information
a long-term health condition. The coping online, to make resources widely
skills that are developed to deal with the available to anyone looking for support.
difficulties of illness can really stand to us One area that is greatly focused on is
in challenging times. anxiety. I thought it might be useful to
However, I am also very aware that the share some information that is presented
prolonged situation of the COVID -19 around anxiety and how best we might
pandemic is affecting all of us in various manage it in these tough times.
ways and with this a high level of stress
may be experienced. People who WHAT IS ANXIETY?
previously coped well may now be less Anxiety is one of the most common
well able to cope. Some may newly mental health problems presenting
By AOIFE SMITH develop a mental health condition. Those worldwide. However, anxiety is a normal,
who previously had few experiences of understandable response and its function
anxiety may suffer an increase in number is to increase a person’s ability to respond
or intensity, and those already diagnosed, to a threat.
may see a worsening or a relapse of a Anxiety can keep us safe; it is our
previous condition. body’s natural way to warn us when
The World Health Organisation (WHO) something doesn’t feel right. It involves a
has reported an increased level of mental type of fear usually associated with a
health conditions seen in several studies perceived threat or something going
around the world due to the impact of wrong in the future.
COVID-19. Therefore, right now it is Research has shown that severe or
Aoife can be contacted The Irish Kidney Association provides a FREE and confidential counselling service for those on
at Donor House treatment, their families and carers either through their counsellor based at Donor House or
through a nationally registered locally based counsellor network.
on 0818-543639
If, as a person on treatment, family member or carer, you feel it would be of benefit to you
or 01-6205306 to speak to a counsellor or if you would like a referral to a counsellor in your local area,
or by email: aoife@ika.ie please contact Aoife at Donor House.
16 IKA S U P P O R T A U T U M N 2020ongoing threat can play a control emotionally and
prominent role in the physically. If COVID-19 has
development of anxiety disorders. increased your anxiety feelings
Persistent unpleasant feelings of remember that you can help
uneasiness, apprehension and to manage them, remember
worry can be distressing and can what is in your control.
have physical, behavioural and Mental Health Ireland
emotional effects. produced a poster to help us
to do just that - ‘Focus on
WHAT DOES ANXIETY FEEL LIKE? what you can control’.
Everyone experiences anxiety If you want to talk to a
differently. Physically it can professional, many therapists,
manifest as a racing heart, including myself, are now
sweating, rapid breathing, doing appointments by phone
disturbed sleep, tensed or weak or conference call, in
muscles, loss of appetite, accordance with current
stomach churning, dry mouth or guidelines and will resume
feeling dizzy. normal service when it is safe
Emotionally, it can manifest as to do so. You can continue to
excessive or undue worry, feelings contact me here at the Irish
of panic, loss of self-confidence, Kidney Association and I will
difficulties concentrating or arrange it for you, or you can
irritability. contact your GP to avail of the
Any of these symptoms, range of options they have
individually or in combination, available.
can affect the way we behave in Thank you to all who called
any situation. or emailed the counselling
services provided here at the
WHAT CAN WE DO... IKA. Please continue to email
These feelings can be intense and of it can help. Anxiety can cause sleep me with topics that might benefit you
alarming to experience, nevertheless it disturbances, but sleep disturbances to read about. Your comments to me
is important to remember that these can cause anxiety. It can be useful to will be completely confidential, no
feelings can be managed. If you feel use relaxation techniques such as names will be used, and no reference
that you are worrying excessively, that meditation or mindfulness to help you will be made to any person or any
it is interfering with everyday life and prepare for sleep. specific email. If there is a common
that it has become upsetting or Breathing techniques are particularly theme in the requests, I will base the
difficult to control, it may be the right beneficial when it comes to managing next article around that topic.
time to look for support. anxiety. It is well proven that simply Thank you to the Tipperary Branch for
Anxiety, like many other mental breathing out for longer than you the invitation to join their Zoom Branch
health conditions can be harder to breathe in has a relaxing effect on your meeting. I look forward to the day that
treat if you wait, getting help early will body. Try breathing in for a count of I get to meet you all in person!
really help to reduce the impact. Now three and breathing out for a count of I would also like to take this
more than ever is a ‘good time to talk’, six to notice if there is a difference in opportunity to wish Mark Murphy the
it is highly likely that whoever you how your body feels. very best in his recent retirement and
choose to talk to may be experiencing There are many YouTube videos, to express heartfelt good wishes to
some of these feelings too. Talking it downloads and apps to guide you Lorraine Costello on her pending
through with family, friends or through these techniques if you are retirement. It has been a pleasure to
colleagues may help you both feel ‘techie’, or if not asking someone who work with you both.
supported. is will help. And to our new CEO, Carol Moore,
How my physical activity is, how I Often people describe an experience the very best of luck in your new
eat and how I sleep, if unbalanced, of anxiety as an ‘anxiety attack’ position. I am excited about the
have all been shown to affect mood because they are left feeling out of journey ahead!!
and well-being negatively. So, it is
important to check the basics.
A small increase in physical activity HELPFUL LINKS
has been shown to trigger brain
• If you need urgent help, Samaritans can be contacted on 116 123 or email
chemicals that improve our stress
jo@samaritans.ie.
levels. Very sweet foods can cause an
• https://www.who.int/teams/mental-health-and-substance-use/covid-19
initial sugar rush which often can be
• https://www2.hse.ie/wellbeing/mental-health/covid-19/minding-your-mental-
followed by a sharp dip in blood sugar
health-during-the-coronavirus-outbreak.html
levels which can cause anxious
• https://www.mentalhealthireland.ie/
feelings.
• https://www.aware.ie/
Caffeine is also known to increase
• Mindfulness apps such as Calm and Headspace.
anxiety levels, minimising your intake
IKA S U P P O R T A U T U M N 2020 17PEER SUPPORT
WHAT DOES IT MEAN
AND WHY IS IT IMPORTANT?
A
ccording to our and lifestyle changes that
constitution, ‘The By COLIN WHITE, IKA NATIONAL PROJECTS MANAGER are associated with living
main objectives of with a chronic condition.’*
our Association are significant impact on how management refers to Individuals who provide
to aid, assist by any we, as individuals, interact ‘support for a person with a peer support offer three
means, counsel and support in so many aspects of our chronic condition from types of support based on
people living with, or daily lives. As a support and someone with the same experiential knowledge:
affected by end-stage renal service driven organisation, condition or similar emotional, informational
disease.’ it is therefore an opportune circumstances.’* and appraisal. Emotional
If we speak of the moment to reflect on our With the growing support involves caring,
Association in broad terms, core values and activities incidence of chronic illnesses empathy and
our Branches can, ironically, and think about how we worldwide, society is having encouragement;
be likened to our roots continue to deliver on our to reflect on how best we informational support
whilst the Board, through objectives. can work towards replacing involves advice, suggestions
Donor House, oversees the When looking at the role a centralised care model with alternative actions and
bigger picture in terms of a of our Branches, fundraising with one that involves factual feedback relevant to
national representation and and peer support generally appropriate self- a particular topic; and
also supporting individuals come to the fore but what management where ‘self- appraisal support involves
through the provision of a does ‘peer support’ mean management refers to a affirming feelings, thoughts
broad range of services and and why is it important? person’s ability to manage and behaviours and thus is
supports. Peer support in the the symptoms, treatment, motivational, encouraging
COVID-19 has had a context of chronic disease and physical, psychosocial the individual to continue
18 IKA S U P P O R T A U T U M N 2020with problem-solving about it and they are likely security of an established a day! Whether we are
attempts despite setbacks.** to speak of it in positive like-minded community. living under COVID-19
This is a very academic terms. However, as a good Traditionally, our Branches restrictions or not we can
way of saying that peer peer supporter they are held face-to-face meetings embrace the networking
support comes out of an going to address the on a regular basis. Now that ability we have as a national
individual’s own experiences question from the our collective realities have organisation with roots in
of a situation similar to that perspective of the person changed we need to look at every county. Let us
of their peer. asking, rather than simply being innovative so that we facilitate people getting in
For peer support to be basing their response on remain relevant. Zoom has touch with each other in
truly impactful it clearly their own experience and become one of the new their own time whilst letting
needs to be objective and circumstances. means of communication them know that the
rooted in fact but there also When it comes to peer and a number of our structures of the Association
needs to be a relationship of support, how do you get to Branches are holding regular are there to offer support
trust and understanding understand the other ‘meetings.’ The value of and services.
between the peers to ensure person’s perspective such contact can be It’s all about offering clear
that it is both appropriate whether you are giving or immeasurable; an communication pathways to
and relevant. The supporter receiving the support? It encouraging word, a new everyone living with, and
needs to be clear about the comes down to empathy – insight or a feeling that you affected by, end stage
limits of their experience, having an understanding of are alone can be particularly kidney disease and meeting
knowledge and the individual and what they informative and supportive their needs in the way that
understanding and be very are bringing to the in these isolating times. is most appropriate to them.
open about the importance discussion. Put simply, We currently hear so There are always many
of seeking confirmation and getting to know each other. much about contact tracing questions but there are also
reassurance from medical This is where our in the media. Let’s put our many answers, some of
professionals, and others, Branches come in. Offering own twist on it and consider which can come from within
where necessary. a forum for peers to meet, tracing contacts at Branch our own community.
A question often asked get to know each other and level who can support each #StrongerTogether
by individuals who are due discuss shared experiences, other. The facilitation of #TogetherApart
to start dialysis is which our Branches are our peer support does not only Please contact Colin
treatment type; grassroots network. The have to happen at a formal White (colin@ika.ie) if you
haemodialysis or peritoneal added value that our meeting. A ‘virtual’ coffee have thoughts and
dialysis is ‘better.’ An Branches bring outside of can help brighten up many suggestions on this area.
individual who has had a simple friendship is the
positive experience with connection into support *
Online peer support interventions for chronic conditions: a scoping
peritoneal dialysis is services, the contacts to review protocol. Sarah Elizabeth Patricia Munce, BMJ Open 2017
Sept 24
obviously going to be able follow up issues beyond an **
Peer support within a healthcare context: a concept analysis. Dennis CL,
to talk more knowledgably initial enquiry and the Int J Nurs Stud. 2003 Mar; 40(3):321-32.
Individuals who provide
peer support offer three
types of support based on
experiential knowledge:
emotional, informational
and appraisal.
IKA S U P P O R T A U T U M N 2020 19last ten years. However, emboldened
Life in
by a successful attempt at peanut
butter cookies I was suddenly churning
out caramel slices and lemon drizzle
cake like no man’s business. I attribute
this unexpected development to an
extremely unsound theory involving
Lockdown
the transfer of baking powers via my
mother’s kidney, considering she’s a
woman who can knock out an apple
tart in her sleep and would have a tray
of scones baked and in front of you
before you knew what had happened.
Of course, it could also have been
B
ack at the end of January, I got down to quarantine boredom, but I
home from hospital after my like the magic kidney powers
kidney transplant, which I explanation better.
received thanks to my As the COVID case numbers rose,
wonderful donor mother Frances. In the situation grew ever more serious,
between watching everything on and when people over 70 and the
Netflix and indulging in all the things I medically vulnerable were encouraged
desperately missed while on a renal to cocoon, (a term we’ve all come to
diet (specifically jambons from the know and loathe), the daily walks had
nearest deli counter and crisps – all of to go out the window. For those six
which I now only have in moderation weeks my exercise involved a steady
before any dieticians give out to me), a amount of swearing at Joe Wicks
countdown was on. While reading while I huffed and puffed my way
over all the recommendations that the through his daily YouTube workouts,
hospital send you home with – hating every minute of it. The fact that
avoiding any large gatherings, washing my dad is a kidney recipient too meant
hands regularly and not allowing any that he was also cocooning for that
visitors with coughs or colds for the stretch of time, although in his case,
first six to eight weeks post-transplant living in gorgeous rural Waterford
By KARYN MOYNIHAN
– I don’t think anyone could have meant that he could do loops of the
known how familiar it would all
(October 2020)
large garden or walk along the road
become. considering making it a karaoke party for an hour and not meet a single
By now it’s so commonplace that so I could call it kidneyoke, a term that other person, something I was highly
masks and hand sanitiser join the I was extremely pleased with. While I jealous of when I couldn’t go past my
‘phone, wallet, keys’ checklist before count myself very lucky that my own front door in Dublin.
leaving the house. But back then, I operation went ahead when it did and When some of the restrictions for
was looking forward to reaching the without any issues, I couldn’t help cocooners were eventually lifted and
end of my post-transplant quarantine, feeling a little hard done by when I we could go outside again, I
meeting up with friends in the pub, reached the point that I could be out completely lost the run of myself and
maybe going on holiday later in the in the world again, only for it to demanded that my partner and I go
year and actually having the energy to coincide with Government for a 10k walk on the first day of the
be out and about, even just for a announcements shutting the country new guidelines. I had a great time
wander around a shopping centre. The down and initiating what would striding around Phoenix Park, looking
last time I had been in a shopping become lockdown. for deer and taking photos by the
centre before that point I was At first, it wasn’t so bad. I was still Papal Cross, but needless to say, 10k
completely worn out after twenty getting out for daily walks, and my after six weeks of not being out
minutes. This time I’d be doing laps of partner Aengus and I got into jigsaws walking at all was ridiculous and I
Liffey Valley and there’d be no in a big way. I even started baking, could only stagger out for significantly
stopping me! which was extremely unlike me, as up shorter and more ache-filled walks for
Once I was free to go out and see until then my go-to creation was a the rest of the week until I got back
people I was going to throw a new banoffee pie, which is more a case of into the swing of things. By the end of
kidney party too. I hadn’t ironed out putting a series of things in the fridge June I was back on form and without
any of the details by then, but I was and I had made it maybe twice in the doing any damage to myself, managed
another 10k walk, this time for the
Getting through this pandemic when you’re IKA’s virtual ‘Run for a Life’. It’s not
quite the level of my auntie Noelle
medically vulnerable really does just mean Conway, a seasoned marathoner who
having to adapt your routine over and over to will be taking part in this year’s KBC
virtual Dublin Marathon and raising
make sure you feel as safe as possible. funds for the IKA on the 26th October,
20 IKA S U P P O R T A U T U M N 2020You can also read
