PWCF Spotlight
PWCF Spotlight
21
Oct
2014

PWCF Spotlight

The PWCF Spotlight series, which appears in each issue our newsletter Spectrum, aims to highlight the accomplishments and achievements of our members. It also provides a platform for people with CF and their families to tell their story.
 

Journey to Running the Dublin Marathon

Helen O'Sullivan, PWCF Age 37, Co Dublin

HOSMy name is Helen O'Sullivan (nee Whearity). I am married to Derek and we have one gorgeous daughter Emily. She is 9 years old. We live in Skerries Co.Dublin.

I was diagnosed with Cystic Fibrosis when I was five months old. Recurrent chest infections and little or no weight gain had a path worn to the GP. It was he who suggested a sweat test.

Fast forward 37 years and I can proudly say that I ran the Dublin marathon! It is for this reason that I am writing the article.

2014 was a great year for me. My first run of that year was 'The Great Ireland Run' in the Phoenix Park in April. It had been three years prior since my last run.

In 2011 I spent almost five months in hospital. One infection led to another and then bowel problems kicked off. A cancelled family ski holiday was a particularly low point for us. I spent the following year recovering, going to the gym and gaining strength.

In 2013 I began taking Kalydeco (Ivacaftor). This improved my lung function and general wellbeing to another level. All treatments for me remain the same; including chest clearance twice daily followed by nebulised antibiotics. At the end of 2013 with an air of confidence we booked flights to Australia to visit family the following June.

 

 

The Circle of Life is Complete and Life is Good

By Helen Ryan-Lawless, PWCF, Dublin

 HyFpljwXeObpqVDNK0kd3YjUGs2CZM8B2W38GO6A6c-1Thirty years ago this month I introduced my beautiful daughter Elizabeth Ryan-Lawless to the CF community. The previous September, I was diagnosed with having Cystic Fibrosis and admitted to St Paul's ward in St Vincent's University Hospital (SVUH) under the care of Prof Muiris X Fitzgerald. I was also told I was pregnant. David, my husband, and I were in shock.

I had been treated for bronchiectasis, had my gallbladder removed and was told I couldn't have children by my doctor. So here I was, the first CF patient to be pregnant, unable to take any medications or keep down food. What to do? We just took one day at a time...

I spent 6 months in SVUH and 6 weeks in Holles Street before my daughter Elizabeth was born. We had to wait for 6 weeks to have her sweat test, which was clear. We decided she would be our one and only. Being an inpatient on St Paul's was made easier by Sr Patricia Hennessey who talked to you each morning to see how you were doing, she looked after us all like family. Physiotherapy was a communal event and involved being tilted in the bed on the ward while Deirdre Concannon went from one to another clapping away. At times it felt like boarding school with the late night chats, games and high jinx. The camaraderie was felt all the more when one of our friends lost their fight with CF. Later through fundraising we got our own TV room with a kitchen to help us escape from the ward. So different from today's cross infection protocol.

 

SURFING – Natural Therapy!

By Claire and Brian McCarthy on behalf of their son Neil, PWCF, Age 13 from Ballyshannon, Co Donegal

Neil McCarthy
We would like to tell you about a very inspiring young surfer, our son Neil who turned 13 in November. His diagnosis of CF was when he was 10 years old. As a younger child he was always chesty, and doctors were quick to diagnose 'hidden asthma', even though he did not have a wheeze or asthmatic symptoms. He did not absorb fats, but again, the doctors measured his height and weighed him and said he was thriving. This was in part due to him avoiding fats in his diet, using multivitamins, and having a fussy mother who made sure his diet was balanced. His distended tummy was "something he would grow out of as he got older". However, it became more pronounced. As parents, we were always concerned but were reassured by the various GPs who treated him, however, we were not convinced.
 
When he was 10 years of age, an internet search of his usual symptoms, brought up a result that it may be undiagnosed CF. Immediately, we knew, this was what Neil had. A meeting with a Paediatric Consultant, resulted in him being admitted to hospitals for a series of tests, mainly due to his enlarged spleen, ruling out Leukaemia, Gaucher's disease, and eventually giving us a confirmed CF diagnosis, on 14 December 2011 in Crumlin Hospital.
 

Chasing Continents and Creon (My life travelling with CF)

By Declan Houlihan, PWCF Age 32, from Co Kildare

It's the summer of 1999 and as a Manchester United fanatic I am celebrating one of the greatest seasons in our history, winning the league, FA Cup and the coveted Champions League. I walk around school with my head held high and all is good with the world. I am also excited as I am completing 5th year in secondary school so one more year until freedom!

It is June and I am on my summer holidays, the persistent cough that I have had for more years than I care to remember is causing sleepless nights – not only for me, but for my family. Then, one morning my Mother raises me from my bed and says "Declan, I'm taking you to our GP for a check up". Nothing for me to worry about, after all I am a normal teenager doing normal teenage stuff, a bit skinny and constantly coughing with painful stomach cramps but otherwise fine.

 

 


 

My Life with CF

By Christopher Collopy, PWCF Age 17 from Co Limerick

I'm Christopher Collopy, 17 years old, and I was diagnosed with Cystic Fibrosis when I was four years of age.

When I was diagnosed it came as quite shock to my mother, as it would any mother. A heart-breaking moment to hear that one's son has been diagnosed with such a life-threatening disease.

Over the years, it became more and more difficult, not only for me, but for my parents. I would be admitted to hospital frequently due to continuous lung infections – two weeks at a time, every other month. However, as I became older I would spend a week or so in hospital, and a week at home on IVs. My mother would undertake the IV antibiotics, getting up at all hours to organise my medication for the upcoming day. 

 


The Road to Transplant and Fundraising for my Local Branch

By Aoife McKiernan, PWCF Age 30 from Co Cavan

My name is Aoife McKiernan and I have CF. As we all know CF is a degenerative disease and most of us will need a double lung transplant at some point if we choose to go down that route. I made the decision that I wanted to have the double lung transplant.

In September 2012 I got a very bad chest infection and my lung function went down from 30-31% to 22%. I was finding the most basic everyday tasks a struggle so after some consultation with my doctor in Cavan we decided to begin the process of getting on the transplant list.

 

 

 


Concentrate on the Good Days

By Aileen Henderson, PWCF Age 17 from Co Galway

My name is Aileen Henderson. I'm 17 years old and I live in Galway with my two brothers and my Mum and Dad. I was born in Scotland and was diagnosed with CF when I moved to Galway at three years of age. Currently I am a 5th year student in Salerno Secondary School in Salthill.

At the moment I am still in paediatric care in University Hospital Galway where I am very well looked after by Dr. Mary Herzig and the CF team. As I have CF related liver disease I was also under the care of Prof. Billy Bourke in Crumlin and have just transferred from there to the Liver unit in St. Vincents.

 

 

 

 


Never Lose the Fight

By Gr‡ainne Fahey, PWCF Age 22 from Thurles, Co Tipperary

Here I stand facing my opponent eye to eye. We gaze at each other with a steely determination. I'm going to give as good as I get, I always do.

No matter how tired I am, no matter how out of breath and uncomfortable I feel, I refuse to give up. I will not be defeated. I will not lose this fight.

 

 

 

 


Transition to Adult Clinic Nothing Has Changed

By Daniel O'Carroll, PWCF aged 25, Co Dublin

My name is Dan O'Carroll and I am a PWCF, and I am just going to give you a brief heads up of the transition clinic and how my life has adapted with CF since I left Tallaght Hospital in 2008, and also how no matter what CF has never held me back from doing anything.

My advice would be for anyone who will be transitioning soon – get into the habit of showing more maturity and accountability for your illness.

 

 


Don't Be Afraid to Follow your Dreams

By Lawrence Brennan, PWCF aged 29, Co Wexford

My name is Lar, I'm 29 years old and I have Cystic Fibrosis. I was diagnosed when I was 9 months old. Over the years I've met some amazing people, both staff and patients. When I look back at my childhood I have only good memories, yes I spent a lot of time in hospital but I was lucky with the amazing family I have. My Mam and Dad worked really hard to give me and my two sisters the very best in life. They tried to treat me as normal as possible by not wrapping me up in cotton wool,   which I'm very grateful for, and I would urge other parents to do the same.

 

 

 


OAK, Olly and Creepy the Bear: The Story of the Two Suitcases Film Week

By Gemma Kent, PWCF aged 15, Co Cork

For me, CF has meant a lot of different things growing up. When I was younger, it was just two letters that meant I had to take capsules before I ate something. Nothing special, no big deal, everyone else probably did it anyway. But when I started school, I realised it made me unique: I was the girl in the class who needed tablets when she ate. And that was seemingly all there was to it: tablets. In secondary school, it earned me a few glances at first but I think being honest really helped there.

 

 

 


50 Years of Life

By Greg Foley, Co Dublin

It's funny the things you remember. Back in the 1970s, I was watching the Oscars when John Wayne strode to the podium to present an award. Slightly breathless, he said in his typical drawl: "Oscar came to Hollywood in 1929". After a bit of a gap, he added "So did I." Well, the Cystic Fibrosis Association of Ireland was 'born' in 1963 and...so was I.

 

 

 


Two Transplants Later...

By Olivia Coen

I found it hard to listen to those words, the words you always knew you would hear at some stage, but wanted to avoid hearing for as long as possible. Those words that made you look at accepting your decline in health. "At this stage you should start thinking about the assessment for the lung transplant".

I am a very independent person and have been from a young age. Growing up with Cystic Fibrosis I considered the usual daily routine of taking nebulisers, tablets, etc a small part of my day. To me filling my day with other interests was much more important. CF was something that was always there but I didn't let it define who I was.

 

 

 

 


The Pursuit of a Dream

By Robert Cook, PWCF, Co Clare

'My name is Robert and I was born in 1984. At three months old I was diagnosed with cystic fibrosis. I would class my CF as being mild as it has never stopped me from living a normal life. Like everyone, my dream was to grow up get married and have kids and enjoy life. I would have to say the beginning of this dream started when I met my wife Sandra back in 2004. We got on like a house on fire and we have stuck by each other through the good times and the bad. We eventually got married in 2010. Sandra and I always spoke about having kids and about the challenges we may face in achieving this dream. I think deep down I was hoping that I would be in the lucky 2% category where we would be able to conceive on our own; my CF was not that bad so I was hopeful, but I think the two of us knew the odds were against us.

 

 

 

 

 


I've Lived a Quality Life Through Sport and Exercise

By Paul Murphy, PWCF, Co Meath

'My name is Paul Murphy and I am a 36 year old PWCF. I am one of five kids, but thankfully for my parents, the only one with CF. A brief outline of my story may be of great encouragement to PWCF, or parents with newborns who have just been diagnosed with CF. It might well show them that there is light at the end of the tunnel. So here goes...'

 

 

 

 

 

 


My Dublin City Marathon Experience

By Jillian McNulty, PWCF, Co Longford

I'm 36 years old and if anyone told me this time last year that I would train for and complete a marathon within a year I would have laughed at them!At that time I was in and out of hospital every 4-6 weeks and staying for an average of 6 weeks at a time. I was just over surgery for reflux and had been on a liquid diet as a result for 8 months, losing 14kg in the process. I was doing very little exercise, maybe a 20 minute walk a few times a week and that was even an effort.

Then I was told earlier this year that my PFT's weren't going to get any better – they had been at the same level for roughly 2 years. The 20% I had lost wasn't coming back and so there were tears, loads of tears.

 

 

 

 


CF or Not, I'm Going After What I Want From Life

Emma Fitzsimons, PWCF, Co Dublin 

My name is Emma Fitzsimons, I am 22 years old and I live in Dublin. I've got two brothers, a half-brother and a half-sister. Thankfully I'm the only person in my family who has CF.

I was diagnosed when I was around 5 months old. My mam says that it took three attempts of the sweat test before I was diagnosed – the first two were borderline – I don't quite remember but so they tell me! I was pretty sick as a baby, I spent some months in Temple Street Hospital. My mam says I was pretty much at the worst end of the scale. But now, like I said at the beginning, I've made it to 22 – wohoo!

 

 

 

 


Tai Chi and Me

By Clare Meleady, PWCF, Co Meath

My name is Clare, I am 27 years old and I have Cystic Fibrosis. I've lived in Meath my whole life and am very proud to be a Meath woman! Growing up I was always aware of CF but never saw it as a negative. It just meant that my life was a little different but I tried not let it hinder what I wanted to take part in as a kid. Mam and dad never wrapped me up in cotton wool. They let me have every furry small pet under the sun to fulfill my love for animals. They just let me live a normal life within reason and with certain precautions; they never once dampened my dreams or hopes for the future. I think this played a huge part in who I am today. 

 

 

 

 

 


Being a PWCF

By Kelli Tara Maples, PWCF, Co Dublin

'My whole life I’d wondered would I be a Mammy, should I be a Mammy; I always pictured myself with a baby as a child. I have four sisters and two brothers – I’m the baby of seven (spoiled!). I wanted a job, someone to love me; a house, a family of my own; to me that was ‘normal’ and I just wanted to be normal. I was always worried growing up about whether someone would love me because I had CF, and all that comes with it including the nebs, physiotherapy, tablets, iv’s and hospital stays.'

 

 

 


Life's Biggest Questions

By Dave Spillane, PWCF, Co Kerry

'My name is Dave Spillane, I’m 23 years old and from Co. Kerry. I was diagnosed with Cystic Fibrosis when I was 3 months old. My parents had never even heard of CF and were completely shocked but they did everything possible to ensure I stayed as healthy and active as I could, even if I was reluctant to do my treatments and physio! I was always an active child and can remember winning lots of gold medals for running. As I got older I began participating in more sports, football, soccer, running, a bit if everything. I believe a combination of sports and sticking to the daily routine of treatments has been a huge factor in what has kept me so well throughout the years.'

 

 

 

 


 A Life Less Ordinary

By Patricia Duffy Barber, PWCF, Dublin

'I’m 33, and at the moment I’m keeping well (thank God!) and definitely keeping busy! I’ve written on the different aspects of living with CF, under a few different headings; Growing Up, Transition to an Adult Hospital, College, Work, Day to Day and Getting Involved with the CFAI.'

 

 

 


Cystic Fibrosis Doesn't Define Who You Are

By Bevin Murphy, PWCF, 17

'My name is Bevin Murphy and I am 17 years old.

I am currently preparing for my Leaving Cert. I hope to go onto third level education and study Marketing in DCU. People would often say to me ‘how do you cope with the doing the Leaving Cert and having CF?’ My response is, I cope like any other Irish teenager doing the leaving cert. Yes, I do have a few obstacles as I miss numerous amounts of school, but with that bit of extra help it is extremely doable, be it coming in early the odd morning to go over what I have missed with the teachers or attending grinds.

 

 

 


I May Have Cystic Fibrosis But It Will Never Have Me!

By Andy Lipman, PWCF, 38

'My name is Andy Lipman. I am 38 years old and I am from Atlanta, Georgia in the United States of America. I was born with cystic fibrosis and lost a sister to the disease three years before my birth. In memory of my sister Wendy, we started a foundation called the Wish for Wendy Foundation which has raised $1.25 million for the Cystic Fibrosis Foundation in the United States. The foundation has events like fashion shows, softball tournaments and comedy nights in order to raise money for a cure.'

 

 

 


Live for the Day

By Rosie Fitzgerald, PWCF, 24

Rosie Fitzgerald was recently awarded a first class honours degree in Applied Psychology, and also won the HETAC award for academic excellence as best overall student in her college. Along the way she found the time to have a lung transplant. She recounts how CF impacted on her studies.

 

 

 


I'm a Very Lucky Person, CF and All 

By Katie Moore, Milliner, Artist, Traveller & Fundraiser

I was diagnosed with CF when I was 6 months old. When people ask me ‘what is it like living with CF?’ I sometimes think ‘what is it like not living with CF?’ I don’t know any different, this is me, I’m 24 years old and have always known I have CF.

I’m a very positive person. I look after myself really well, I don’t drink or smoke, I eat very well, I run or cycle everyday, and I take all my medications. I’m determined to keep myself as healthy as possible.

 

 

 


Organ Donations Save Lives

By Trevor O’Sullivan, Journalist and PWCF

The First Thing I Felt was a Fresh Cold Blast Going Into My Lungs – It was the Most Amazing Feeling I Ever Had

By Declan O'Doherty, Double Lung Transplant Recipient, Co Galway

Don’t Suffer from Cystic Fibrosis, Live With It

By Debbie McCarthy, PWCF from Cork

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