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“Becky was a wonderful, caring person. She worked alongside her family and friends on multiple fundraisers for others like the Second Chance Ball. So when she passed away, it only seemed natural that we would continue fundraising for transplants and medical research on conditions like Cystic Fibrosis.” – Mary Elizabeth Jones.

In September 2011, Becky Jones sadly passed away following a double lung transplant and a history of Cystic Fibrosis and a drug-resistant infection called Aspergillosis. Becky had spent her young life helping to fundraise for Life-saving medical research and treatment. She had worked with her parents and family friends to help organise multiple fundraising events such as the Second Chance Ball.

Over the years, her friends and family have organised a series of commemorative events called Becky’s Ball. They’ve raised tens of thousands to fund medical treatment and research programmes and to honour her memory.

Funds raised from the most recent ball, Becky’s Ball 2017, will go towards the MedEx/BreatheSmart programme run by Dr Noel McCaffrey following the recommendation of the Head of the Mater Heart and Lung Transplant Unit, Dr Karen Redmond. This programme focuses on developing the physical fitness of patients pre- and post- transplant in order to greatly improve their chances of a full recovery, particularly for those undergoing a transplant because of Cystic Fibrosis.

Becky Jones Ball 2017 with Barry Jones, Becky’s father, and Mary Elizabeth Jones, her cousin

Mary Elizabeth Jones, who is Becky’s cousin and works as a staff nurse in the Pain Medicine Clinic of the Mater, spoke about how the ball has been a lasting memorial as well as a key fundraiser to important medical research.

“Becky, her parents and their friends were incredible advocates and fundraisers. They organise fundraisers like the Second Chance Ball and raise money for medical equipment for things like Ex Vivo treatment and ground-breaking research. That was very much a part of who Becky was, she was an advocate. So a couple of years after she passed away, her close friends Jill Houston, Noelle Healy, Kate O’Loughlin organised a fundraising ball in her memory and called it Becky’s Ball. It was incredibly successful. It was a wonderful and personal way to remember her. So we knew we had to run a second one.

“We were guided by Brenda Finn and Aisling, Becky’s mum. We decided to do it in June as a Summer Ball and wanted the money to break new ground and increase recovery rates for transplant patients, especially for those requiring transplant because of Cystic Fibrosis who need tailored preparation in the pre-transplant stage. We were looking for how to create a lasting and positive difference in Becky’s memory.

So we held Becky’s Ball 2017 in the Shelbourne in aid of the Med Ex/BreatheSmart programme. There was an incredible amount of support for it. Local businesses from Castleknock and Ranelagh sponsored us, the hotel staff were a huge support and there was a huge attendance on the night.”

Becky Jones Ball Cheque Presentation

Captioned from Left to Right: Dr Karen Redmon, Marie Brennan, Johnny Jones, Jill Houston, Noelle Healy, Mary-Elizabeth Jones, Dr Noel McCaffrey and Kate O’Loughlin. This photo was taken of the Becky Jones Committee presenting the Mater Foundation with a cheque for €52,500 that will go to the MedEx/BreatheSmart Programme, run by Prof Noel McAffrey and recommended by Dr Karen Redmond also pictured.

We’re really happy to have done something in her name that will make a lasting difference to recovery rates for transplant patients. I used to work in the Cardothoracic Unit so I have huge respect for Dr Karen Redmond and am really grateful she helped steer the funding towards a programme with huge potential. Most of the committee for the Becky Jones Ball, including my brother Johnny and Noelle Healy, either have a role in medicine or have an understanding of health and the importance of research. So we’re excited to see Dr McCaffrey use this funding to break new ground.”

Mary Elizabeth especially wished to thank all the businesses who supported the Becky Jones Ball and the wonderfully generous guests who contributed to the funding of the MedEx/BreatheSmart programme.

“This is the 11th Family Room to open in the Mater Hospital in the last 6 years. It will be a place of comfort and solace to patients and their families. A space where they can relax and feel at ease with one another during difficult times. The importance of the financial contribution from fundraisers like Sarah, Mary and the Jordan family cannot be overstated” – Gordon Dunne, CEO of the Mater Hospital.

On the 17th January 2018, the Mater Misericordia Hospital opened a new Family Room in the Cardiothoracic High Dependency Unit. Thanks to people like you, there are now 11 new Family Rooms across the different wards of the Mater Hospital. Family rooms are places of solace and comfort for patients and their relatives. They exist to provide a space for people to be together at difficult moments during a healthcare journey. They are somewhere to process bad news. They are also somewhere patients and relatives can meet and have a cup of tea outside of the noise and activity of a public hospital ward setting.

The opening of a new Family Room in the Cardiothoracic High Dependency Unit is thanks to generous donations raised from their local community by Mary and Sarah Jordan and the Jordan family.

The Jordan family have also been instrumental in funding several key projects for the hospital over the years, ever since Sarah Jordan underwent a successful heart transplant in the Mater Hospital in 2011.

From left to right: Mater Foundation CEO Mary Moorhead, fundraisers Mary and Sarah Jordan, End of Life Care Co-ordinator Diarmaid Ó Coimín, Staff Development Coordinator Mary Ryan, Directorate Nurse Manager Nina Sheridan and Acting ADN Marie Brennan

Funds raised by the Jordan family and their community have previously gone to the Heart and Lung Transplant Unit of the Mater Hospital, driving essential training, the purchase of vital equipment and supporting patients who suffer from conditions like Cardiomyopathy, Cystic Fibrosis and Congenital Heart Disease.

With the opening of the new Family Room for patients in the Mater Hospital Cardiothoracic High Dependency Unit, senior hospital staff and hospital foundation staff said a few words in appreciation of the Jordan family and others like them.

“A huge thanks is due fundraisers like the Jordan family. The donations raised by community events have allowed an incredible scope of work in a short space of time. This is the 11th Family Room to open in the Mater Hospital in the last 6 years. It will be a place of comfort and solace to patients and their families, a space where they can relax and feel at ease with one another during difficult times.”
– Gordon Dunne, CEO of the Mater Hospital

“The Jordan family have raised over €35,000 for the Mater Foundation, including €6,000 for this Family Room, since 2011. That’s an incredible commitment and has made a world of difference to patients that have been through the Mater in recent years. At difficult times, people who’ve taken ill want their loved ones close by. Thanks to the Jordan family, visiting relatives of someone who’s taken very ill will be able to stay close by, even overnight, using this facility.”
– Mary Moorhead, CEO of the Mater Foundation

“When you’re used to the noise and alarms of a public hospital ward, you don’t think twice about them. As hospital staff, it’s just your everyday workplace. But for visiting relatives of a sick patient, it’s nerve-wracking. Add that to the constant commute, trying to find parking, worrying about someone you love, and it’s clear that they don’t need the additional stress. This Family Room means a space away from all that where they can relax and have a cup of tea or, when things take a turn for the worse, recuperate together after hearing bad news. It’s a very necessary resource and I see everyday the positive impact it makes on the lives of those who use it.”
– Mary Ryan, Staff Development Coordinator

“I was 19 and the doctors were afraid I was going to have a heart attack. That’s how high my blood pressure was at the time. So the doctors sent me to the heart monitor ward. That was my first experience of a hospital.”

Andrew Browne is a talented, young golfer and massive Real Madrid fan. He’s also been through 3 major surgeries in the past 2 years and is living with ulcerative colitis, Crohn’s disease and an ileostomy bag.

The stand out feature of his game, as he contemplates turning pro, and his medical history is pure mental toughness. Not many people could handle almost having a heart attack at 19 years old. But Andrew just laughs it off.

Andrew at his local club in Luttrellstown

Andrew at his local golf club, Luttrellstown Castle

“Who gets a heart attack at 19? I was active I was sporty. But I went from weighing 9 stone to 5 stone in eleven days and my blood pressure was through the roof, it was about 200 over 100. I remember the nurse saying it was the highest she had ever seen.”

Andrew’s story starts with what he thought were flu symptoms. He had diarrhoea with blood, joint pain, extremely tired and just didn’t feel right. But after medical staff at the Mater ran a few tests, he was diagnosed with ulcerative colitis. He was initially able to treat the condition with a medication called mezavantor.

But after a couple of months, Andrew’s symptoms worsened. He was admitted into the Mater Hospital and underwent an emergency colonoscopy. Then he was rushed into surgery.

“My bowel was about to explode. The doctors told me I would die in a couple of hours if I didn’t have surgery right away. There was a rush to prepare me for operation and get me into the theatre as soon as they could.

When the porter came in to bring me down for the surgery I couldn’t move there was no life in me. My dad had to lift me up off my bed onto the trolley. He told me a couple of days later it took no effort to lift me onto the trolley. Not surprising really considering I only weighed 5 stone.

During the operation, the surgeons had to remove 90% of my large bowel. But I was obviously unconscious of all that. I had been in such a bad way prior to the operation that I wasn’t fully aware of everything.

When I woke up after surgery, I was in ICU. But it was night by that stage and the room was pitch black. I was so disorientated and out of it that I didn’t recognise I was in a hospital ward. It was seemed so dark and quiet, I thought I was dead.

This woman, a nurse, came out of nowhere and the first thing I said to her was, Am I dead?

No you’re alright, she said.”

Andrew was moved to St Monica’s Ward of the Mater to recover after being discharged from ICU. He now had an ileostomy bag after having undergone a colostomy to remove a large part of his colon. This was a massive and sudden change.

“I remember after the surgery even though I survived I was still in a really bad way. I had two bags on my stomach, two drains coming out of my stomach, a morphine drip in my left, a TPN line in my neck, and an NCG tump up my nose. I had to learn now to walk again. The first time I walked after the surgery I needed the help of five other people to do so, and we only walked about ten yards. Not surprising after all I had been through and only weighing 5 stone.

I didn’t realize how difficult it was going to be to live with Crohns, Colitis ,and an ileostomy bag. The side affects I suffer from all three has changed my life so much its unbelievable. Fatigue, joint pain, memory loss, lack of sleep, headaches, and extreme tiredness just to name a few. People can’t believe now much I suffer. People often say to be you look really good. Just because someone looks good doesn’t mean they are. That’s why crohn’s and colitis are called invisible illnesses. People like me are in constant pain. It sucks.”

Furthermore, there’s still a lot of stigma about ileostomy bags and Andrew had to adjust straight away.

“At first, I was worried about it. I was even down about it for a while. I wondered how it was going to affect my life and my game. Golf was my big hope for the future. I wanted to play pro. And of course, I was worried about the social aspect of it as well.

But then, once I talked with the doctors and realised it wouldn’t have an impact on my golf, it became easier not to care about what people think. I read stories from other people with ileostomy bags like Leanne Hammond. That helped too. There is still a lot of stigma about bags. But it’s just ill-informed.

Andrew's stoma selfie, breaking the stigma and shame about stoma bags

Andrew’s stoma selfie which he posted on Instagram, breaking the stigma about the size and noticeability and any sense of shame in wearing one.

I had this moment of realisation about how hard they actually are to notice when I was talking to an older player at my club in Luttrellstown. He’d heard I’d had the operation and told me he’d a bag too. He’d had a colostomy 20 years ago. All that time, seeing him around before, I’d never known. It was a wonderful gesture and it just shows that people think they’re more noticeable than they are.”

Andrew suffered further complications following his initial operation. He needed follow up surgery a few months after getting the ileostomy back due to a blockage in his bowel. During recovery from that second operation, he was diagnosed with Crohn’s disease as well as colitis. He then later developed a hernia on the site of his ileostomy bag and went for a third round of surgery.

But despite the setbacks to recovery and constant hospital trips for surgery or consultation, Andrew kept his mental toughness and played golf when he could. He broke course records at his club and even won the Captain’s Prize. There were bad days when he couldn’t play and he considered packing in his career given the obstacles he was facing in his professional career because of his health.

And those were the moments he turned to his second love, Real Madrid and big Classico football matches in Spain.

“I’m a massive Real Madrid fan. And that’s only a good thing as a person with Crohn’s disease. The energising effect of the sun on you when you have Crohn’s and colitis is unbelievable. It’s a huge help.

Andrew proudly sporting his Real Madrid jersey in Spain

Andrew proudly sporting his Real Madrid jersey in Spain

I went over for a few matches. I remember one of them took place at 11 o’clock at night and it was 35 degrees. The game went well into the next morning. It was just an amazing atmosphere and an amazing break. The whole lead up to going away to Spain every time I go and the experience of being over there really takes me out of my own head for a while, for a week or so. It makes everything easier to handle.”

Experience of St Monica’s Ward and staff

Andrew spent a lot of time recovering in St Monica’s Ward, a surgical ward of the Mater Hospital. He had nothing but good things to say about the staff.

“They work their asses off in St Monica’s. I’ve been in a few wards and St Monica’s is by far the busiest. I remember one night after my initial operation, I was getting sick a lot and had a high temperature, there was a nurse who stopped to talk to me for a while. She went above physically taking care of me to checking if I was alright at a personal level, considering the major change in my life following the operation I’d just had.

I was the youngest on the ward at the time. And it’s a serious ward. It’s a place where people come to go for surgical, potentially life-altering procedures. So it was daunting for me at the time. They made sure to check in on me mentally as well as physically while I was there. That meant a lot.

They’re also just a great laugh. I get on well with all of them. They’re the hardest workers, I know, by a long way.”

PHOTO

“I was in hospital for 10 months. I had a viral heart disease, then a stroke, then major surgery for a heart transplant. Pretty much every piece of Life saving equipment that exists in a hospital was used on me. But thanks to my heart donor, I was there for my daughter’s first day of school and my best friend’s wedding.”

Damien Keogh suffered a stroke whilst in hospital for viral myocarditis, an inflammatory heart disease. As a result, he has difficulty fully recalling everything that happened to him. He relies, in part, on conversations with his friends and his wife, Sally. But what he can tell from his time in the Mater makes for one of the most incredible stories to come out of the hospital.

“They tried everything. I was on an LVAD, then an ECMO, and the clock was running down. I had had a stroke, I’d lost weight from 16 to 10 stone. I thought I’d missed my chance at a transplant because, on the first call I got, the organ wasn’t viable. I remember thinking, that’s that. I’ve missed my chance. I was basically at that stage when I’d almost given up when I got a second, successful match.”

Damien and his "miracle worker" cardiothoracic surgeon, Guillermo

Damien and his “miracle worker” cardiothoracic surgeon, Guillermo

Damien’s story starts at his job with the Tifco Hotel Group. He was fit and healthy, playing football regularly with friends and on a good career track. But on the way back from lunch one day, that suddenly all changed. His colleague, Wes, remembers him suddenly turning pale and saying: If I didn’t know any better, I’d reckon I had a heart attack.

When he got home from work that day, his wife Sally was concerned. She was training as a midwife and recognised that something was very wrong. She called a friend who’d qualified for a second opinion. Damien ended up being rushed to hospital.

10 Months in Hospital with Viral Heart Disease

Damien had contracted myocarditis, an inflammatory heart disease, from a viral infection. Even today, he doesn’t know why or how. But a few days after his little girl should’ve been celebrating her birthday, he had major surgery to give him a Left Ventricular Assisting Device or LVAD.

The LVAD was meant to keep him alive despite his failing heart.

“It’s like an old-fashioned, 1980s computer. It’s a big massive black box and it had two pumps that went from the machine straight into my heart. I couldn’t leave it. Whenever I was going anywhere, like for an X-ray, I had to be hooked up to a portable version of it. A portable LVAD which looked a bit like a roll-on luggage suitcase.

But sometimes when they’d do the changeover between the two LVADs, plugging the standard one out and the portable one in, I’d just spark out.

It’d be lights out and I’d wake up a couple of seconds later with 15 people standing over me. And I’d be like, What? But I got used to it eventually.”

Then things took a sudden turn for the worse. Damien developed a blood clot and cardiac tamponade around the site of the LVAD. He was rushed back to surgery. During the operation, his health went downhill fast.

He began to bleed very heavily. Then he had a stroke, and his heart stopped beating for 12 minutes.

Damien was saved from the brink by the Cardiothoracic team at the Mater Hospital. He emptied the blood bank of the hospital during surgery. He required 92 units of blood in a 24 hour period. But he was stabilised and moved to intensive care. Once he recovered, he was then moved to the Cardiothoracic High Dependency Unit or CTHDU.

“There was a couple of nurses there I got on really well with. Eimear Foy was one. She’d come in and always try and put you in a good mood. Mary Ryan was another. You could have a laugh with her. I’d be playing Grand Theft Auto, which I completed in hospital and that’s no mean feat, and they’d be shocked and appalled at it. We had a bit of craic.

There was two lads in particular, Manny and Kamal, that I became good mates with. They were both Indian and had known each other for years. They were nurses on the ward and we just got on really well. They used to bring in takeaway some of the nights, which was just such a big deal after so long on hospital food only.”

By this stage in his treatment, it was clear that Damien’s heart was in a bad way. He wasn’t going to recover from viral heart disease without a Life-saving intervention. He needed a heart transplant. The LVAD was not a long term solution. But when he finally got the call to go into surgery for the operation, it was cancelled. The organ was not viable.

At this stage, having been through the works, Damien felt like giving up. But he didn’t, and that was thanks to one person. Despite the stroke he suffered, he still remembers everything she did for him.

“I can’t say enough good things about my wife, Sally. She was there for every hard conversation, every tough decision. I spent 261 days in hospital and she visited me for every single one of them while studying to be a midwife at the same time. The only day she took off was to see Ed Sheeran in concert and that was across the road from the hospital anyway, in Croke Park!

I don’t know how she did it. She had to manage the kids and exams and seeing her sick husband. She’s an incredible person.”

Damien and his wife Sally

Damien and his wife Sally

Damien got very lucky on two days in his life. The day he met Sally. And the day of his successful heart transplant. It came right after the first cancellation. The next day, he got told there was a second match. This is very rare. It doesn’t normally happen that there would be two matches from two donors on consecutive days. He couldn’t believe it.

“Manny came running into me. He pulled open the curtain and said, Are you ready to go again? I was like, Fuck off Manny. You know, I thought he was joking. There was no way there was two calls in two days.

He said, No I’m serious. This is it! If it’s a match in any way shape or form, it’s for you because you need it right now.

So I rang Sal. I said, You need to come back in here. She was like, There’s no way! I told her, Look they’re telling me you all need to get in here.”

Damien went into the operating theatre for a heart transplant on the 14 July 2015. The most difficult part was explanting the LVAD that he’d depended on for life for so many months. Thankfully, there were no further complications and the transplant was successful.

A New Heart and a New Lease of Life

Thanks to his heart donor and the incredible work of his surgical team, Damien had a successful transplant. When he’d been hoping for this second chance, he’d always imagined another long stay in hospital following the operation. But the speed of his recovery surprised him. He was discharged from intensive care after a week post-transplant and spent the rest of his stay healing in St Cecilia’s Ward.

He even got permission to leave hospital to be groomsman for his best friend’s wedding.

Damien and his family and his friend Stuart's wedding

Damien and his family and his friend Stuart’s wedding

“Not to sound clichéd but it was like I got a new lease of life. I went from literally dying in a bed to being up and walking around on my own. And then I got to go to Stuart’s wedding.

Basically, I made arrangements with my Cardiothoracic surgeon Guillermo. And a local lad who’s a barber in Celbridge came in and cut my hair. The lads then came in and got me fitted for a suit. One of my best friends, Paul Sweeney, picked me up on the day.

And there I was at the top of the church. People were staring at me because of the change that had taken place. I’d been on the brink of death and now I was attending Stuart’s wedding. The only really noticeable sign of what I was going through was that I had to wear a face mask. But I kept that out of the photos.

It was just surreal after so long outside of a normal setting. It was just kind of a phenomenal thing. I had a great time at the wedding. I went back to the reception for an hour or so and an hour turned into two and that turned into three. But then, I remembered my promise to Guillermo that I’d be back by 6 o’clock so I left. I ended up laughing to myself in the ward because I realised I could’ve stayed longer and he would’ve been none the wiser. But I made him a promise and don’t regret sticking to it.”

Damien had been isolated in hospital for a long, long time. But he’d always had a goal of being there for his daughter’s first day of school, to walk her. Things ended up working out in terms of his transplant timeline. He had to put in serious work with the physios at the Mater in terms of physical rehabilitation. His body had been through so much that he had to re-learn how to walk again.

But he made it.

“It was always one of my biggest goals when I was in hospital. I wanted to walk Ava on her first day of primary school. Now, thankfully, her school was at the end of our estate so I didn’t have to walk far. But it was one of those ‘dear diary’ moments being able to be there for that. I’ll always remember the smile on her face that day, starting school. That’s a moment that’ll always stay with me.”

Recovery & Support

Damien put a lot of effort into cardio-rehab but still suffers from trouble with his short term memory. It’s a result of his stroke. He will often take a photo of his car if he parks it as a prompt to help him remember where it is after the shopping’s done.

After 15 months of absence, Damien went back to the Tifco Hotel Group and found his desk exactly as he’d left it. No one had moved any of the papers he’d left there. He even found a post-it from before he left by the computer.

At the time he first fell ill, the owners of Tifco, Gerry and Aidan Crowe, looked into what they could do to help Damien. They and the entire company were fully supportive of him and his family at a moment of crisis and continue to be so today.

“Coming up to Christmas, Tifco were having a staff awards night in Clontarf Castle. The place is beautiful that time of year, all done up in lights. I’d got an invite to go to the dinner there. After everyone had eaten, they started calling people up for 20 years service awards, 15 years, 10 years and then when it came to 5 years… they called my name out.

It was overwhelming. I hadn’t worked for them for basically the past year and a half. But I got an award saying that I’d been a valued member of staff for the past 5 years. I stood there at the top of the room and it was a pretty amazing gesture on their part.”

Damien’s wife Sally, meanwhile, finished her course at Trinity College and qualified as a midwife.

Sally graduating from her midwifery course at Trinity College Dublin

Sally graduating from her midwifery course at Trinity College Dublin

Their family life is settling back to normality. Damien’s son spent a lot of time looking after Sally while Sally looked after Damien. The viral illness took a toll on all of them. But they all recently went on a Christmas holiday to London together and that was amazing.

“I’ve had serious downs over the past two years. But I’ve also had massive ups. Getting to my best mate’s wedding – amazing. Walking Ava – amazing. London – amazing. Seeing Sally graduate from college was phenomenal.

Right now, I’m working on my recovery. I’m working on putting my stroke issues behind me and getting back to work again. I’m working on being active and being social. The new project is to get a few Walking Football games started.

It’s something I’ve looked up and it’s big in America. It’s played with a weighted ball and the rules generally agree that the ball can’t really leave the ground. So that’s great for me because if I got a smack in the chest, I’d be a goner. I’ve been speaking to a few other lads doing physical rehab and on their own recovery path from brain injuries and the like. It’s definitely a goal for 2018.”

Damien's family at a picnic in Phoenix Park. He's continuing on the path to recovery with the help of his loved ones.

Damien and family at a picnic in Phoenix Park.

“While I was on the heart transplant list, my late mother came up and visited me a lot. On one of her visits, she brought up an article about a Galway man called Ernesto Antonio. He’d had a heart transplant and had recently swam from Clare to Salthill in Galway. He’d also done the Dublin Marathon. He’d made a full recovery and that lit a fire in me. I knew I’d be back to full strength one day. If he could do it, I could do it too.”

Owen Trill is a well-known name to people in Ireland waiting for a heart transplant. He’s an example of someone who’s fully back to an active lifestyle after a successful operation. Only 5 months after his transplant, he caught the first salmon of the season in Galway, which weighed 9.5lbs. He then climbed Croagh Patrick the following year.

Owen’s life has always been outdoors. He’s waded the Galway Salmon Weir and the River Drowse, hiked Diamond Hill and the Twelve Bens, fishes, hunts, shoots and has worked hard on building sites around the country.

But coming back to that lifestyle after major surgery and an illness that almost cost him his life was a difficult process. Owen appreciates it all the more since recovering from cardiomyopathy and a heart transplant.

Owen caught his first salmon at the age of 10. He loves life outdoors

“I’m back out climbing, fishing and shooting. That’s what I always did. But I take nothing for granted now. I’m grateful and enjoy life even more, so I do. After having to learn how to walk again, after not being able to wade into the water to fish and only being able to fish from the banks for 12 months, I take none of it for granted.

I always used to eat healthy. I made my own bread. I shot my own game. I never even took a dispirin in my life.

But even still, I got no warning. No warning whatsoever. I suddenly started getting very short of breath. I felt a tight squeeze on my chest. Three days later, I was rushed to hospital. I was going into multi-organ failure. I had clots in my lungs and clots in my liver. I swelled up to the size of the Michelin man.”

Owen had dilated cardiomyopathy. He was put on a balloon pump and given medication. But, ultimately, it was decided that he would need a heart transplant. For someone who had been so physically fit all his life, this was huge news and a huge change in circumstance.

Owen’s late mother visited him in hospital while he was waiting on the heart transplant list. On one of her visits, she brought him up a newspaper article about another Galway man, Ernesto Antonio, who’d had cardiomyopathy and a subsequent heart transplant. The article was covering his recent participation in the Frances Thornton Memorial Galway Bay swim from Clare to Salthill and his world-record Dublin City Marathon time of 3.45, which was the fastest a heart transplant patient had ever completed a marathon.

“She showed me the picture and story. This man was swimming channels, climbing mountains, cycling hundreds of kilometres. I said to myself — if that man can do all these things, then I can go back fishing and hunting. From reading about him as a successful heart transplant recipient, it gave me a huge boost. A kick in the behind.”

From then on, Owen spent his time looking up dates, times and planning fishing trips while he was waiting to be matched for a heart transplant. He got the call three and a half weeks after being put on the list and had a successful transplant. The night after the operation, he tried to get on his feet. The story his mother had brought up for him had stayed with him. He was determined to make a full recovery.

 

“That’s what I focused on. The moment they gave me a zimmerframe to help me stand, I tried to walk. I couldn’t, mind, and had to fall back onto the bed. And I did listen to what the physio told me. But on the day she came to bring me for my first walk, myself and one of the nurses were laughing. Because I’d went on my first walk with the nurse an hour beforehand. The nurse told her — Owen was already out for a walk. I caught him up walking around. We were watching him for ten minutes walking around in the room.

So every day, the littlest thing I’d do was a big achievement for me.”

Twenty weeks after Owen got his heart transplant, he took the first salmon of the season on the Salmon Weir in Galway. It weighed 9.5lbs. He spent 18 days fishing for it on the banks of the weir in walloping hailstones and rain, wrapped up against the weather. He wasn’t yet wading fishing because the doctors had told him to wait 12 months before wading heavy water. But he was on a path to full recovery.

But even though Owen is happy to talk about his rehabilitation for the benefit of other patients on transplant waiting lists, he prefers to attribute the credit in his stories to donors.

“The heroes of transplantation are the donors. But for some kind donor, we’d not be here. Lungs, hearts, kidneys, whatever transplant a person needs, the heroes are the donors. That’s why Ernesto was doing marathons and swims, to raise awareness about the importance of organ donors.

That’s one of the reasons I climb mountains. Why I was out climbing Diamond Hill in Connemara and why I’ve done Croagh Patrick. To raise awareness too.”

Owen is an active member of the Irish Heart and Lung Association whose mission is to promote organ donation. He recently met Ernesto Antonio, who’d been such an inspiration to him at a difficult time. Ernesto currently works in England as a nurse but met with Owen during a trip back to Galway.

“We met up and had cakes and chocolates. We shouldn’t do but we did! What he went through and what I went through was the same, exactly the same. Same symptoms. No warning, went into multi-organ failure, on the balloon pump and then the heart transplant. It was great to finally meet him.”

“One of the things I’d say to anybody, patient or family, is Don’t Google Breast Cancer. There are a lot of trolls out there. And there’s a lot of sensationalism and people looking for clicks. Or it’s just out of date and not accurate. If you’ve a question, ask your nurse, ask your doctor, ask your consultant, ask your oncologist, ask your surgeon. Don’t be afraid to ask them the questions. Not Dr Google.”

Caitríona Plunkett found a strange lump on her breast just before the day of her daughter’s Holy Communion. She went to her GP and was later diagnosed with breast cancer just after her birthday. She had the same initial reaction as anyone else. She immediately feared the worst.

Normally a very practical and evidence-focused person, Caitríona was even more upset at what she found online. There were a lot of bad stories and even worse photos. Thankfully, she had the sense to immediately go with the inevitable questions and worries to her nurse in the Mater, Sinead Murtagh, and her oncologist at the time, Dr Cathy Kelly. They reassured her that the impact of breast cancer on an individual life can’t be discussed in a meaningful way without reference to the individual’s pathology results, to their particular circumstances. And that cancer is a generic term throwing up results on Google that don’t reflect the outcome for a lot of people diagnosed with it.

“There are so many different types of cancers. There are so many different treatments. There are so many different stages and grades. And it’s important to note that not every cancer story is going to be a bad story. One of the things I’d say to anybody, patient or family, is Don’t Google Breast Cancer. There are a lot of trolls out there. And there’s a lot of sensationalism and people looking for clicks.”

Caitríona’s whole view of cancer changed as a result of her diagnosis and treatment. She’s now completely convinced of the importance of breast cancer research having had successful breast reconstructive surgery with Professor Malcolm Kell. She also now believes that there is no capital C to cancer and that there’s no right or wrong way to go through it as a patient.

Caitríona Plunkett who raised money for breast cancer research and kindly agreed to this interview.

“I have had a very positive experience and a very positive outcome. There were really bad days. But I also had the craic with the nurses in the day oncology ward. My experience wasn’t typical of how TV portrays cancer. I managed to finish a Masters in Organizational Business Psychology despite the illness. And I didn’t get a break from being a Mum either. But that probably helped me through it.

I remember this incredibly funny and pivotal moment with my youngest, Gavin, who was 6 at the time. The nurse had given us a comic book for kids to explain about breast cancer. It was fantastic, I actually learned a lot from it. But there was one part in it, at the end, where the Mum in the comic book had been treated. The cancer cells had been eradicated. Everyone in the comic book, all the doctors and the medical team, were going back to Head Quarters for a final general meeting. And Gavin looked at me funny at that part. And he said, No that’s wrong. It’s not Head Quarters. They shouldn’t be going back to Head Quarters. It should be Boob Quarters. And I don’t know why but that was the funniest thing.

Caitríona with her youngest child, Gavin

It had been such a long day before that moment but it just made me realise that they were going to be alright and I was going to be alright. And we would get on with our lives.

You know, cancer’s always portrayed as this tragic thing. People always whisper the word and tilt their head when they look at you once they find out you have it. And maybe once I saw it like that too.

But now I understand that you go through it your own way with your own way of coping. I had a pretty dark sense of humour about it at times. But that’s fine. Your cancer, your rules. If somebody wants to go through cancer doing somersaults, I’ll think that’s ok.”

Caitríona decided her way of going through cancer would be to hold on to a sense of normality. She decided not to let cancer disturb her plans or routine. She only told 6 people about her diagnosis and treatment. Even through the gruelling chemotherapy and the surgery, she kept it quiet. At the start, when initially diagnosed, she had briefly considered dropping out of her Masters programme. But instead, with the support of her husband, she completed it and graduated just last year.

Caitríona and her husband Conor celebrating her graduation from the University of Liverpool

Caitríona only went public about her cancer after she completed her chemotherapy, had her surgery and got the all clear. She then started raising awareness about breast cancer and the importance of surgical oncology. She was an eligible candidate for nipple sparing breast reconstruction under the care of Prof. Malcolm Kell.

“Surgery is not just about removing cancer cells. It’s also about giving you back a sense of normality. For me, it allows me to look in the mirror and see Caitríona and not Caitríona who lost a breast to breast cancer. Another important element of recovery”.

Caitríona started raising awareness about breast cancer and raising funds for surgical oncology during the 2017 VHI Women’s Mini Marathon in Dublin.

“I was diagnosed with Stage I, Grade III, triple negative breast cancer. I was lucky because I detected the lump myself at an early stage and I contribute this action to the ads on the radio and TV and billboards that promote women’s health, checking your breasts and knowing what is normal for your own body. It’s so important that we all get to know what feels right for us individually. If you are not happy with something, go and get it checked out. Trust your instincts. It may just save your life.

So I decided to join people raising awareness about the importance of that and people raising funds for surgical oncology in the VHI Women’s Mini Marathon.

I walked 10km in the lashing rain with a friend Diane. We were drowned rats but we didn’t care. We did 10km of chats. And that was the first most people heard about my breast cancer. Thankfully, they gave quite generously and we raised €2,700 in funding for Professor Malcolm Kell.”

Caitriona and Diane at the 2017 VHI Women’s Mini Marathon

Caitríona is determined to keep fundraising for surgical oncology and to support awareness raising initiatives like the Women’s Mini Marathon again in 2018. As a person who has gone through breast cancer she feels well positioned to be an advocate for raising awareness for early detection and for better treatment during and after diagnosis including positive wellbeing and for breast cancer research.

While Caitríona is now happy to share her experience openly, she admits she kept it quiet while going through treatment so as to avoid the typical reactions you might expect from people that hear you have cancer. She simply wanted to just have the focus and energy to get through it all.

“People mean well. I mean, look at the support I got for the Women’s Mini Marathon. People mean really well. But I didn’t want the shock of coming out as someone with breast cancer. I just wanted to get on with things. Don’t get me wrong, there would be days especially after chemo where I’d sit in my pyjamas and watch rubbish on tele and that was nice too. But I didn’t wallow in it. I wanted to avoid the sympathy and shocked glances from people and having to explain that I had cancer and constantly reassure people over and over again. That energy was instead reserved for fighting cancer. The small support network I told about my cancer kept it normal for me. They were there to step in and help when needed but also knew when to just give me space to just be me: Caitríona, a Mam, a wife, a friend.

Of course, some people would prefer to tell lots of people and there’s absolutely nothing wrong with that either.

I think the most important thing to know about cancer is that it’s individual. That can mean understanding that the stuff on the internet mightn’t apply to you because what applies to you is particular to your pathology results. And that can also mean understanding that how you deal with this illness is down to you. In the midst of the chemo and the bloods and everything else happening, you get to keep that tiny bit of control.”

Caitríona has since spoken to the Irish Independent about the ordeal of telling your children you have cancer. You can read that article in full by clicking on this link. She found that being open and honest about having breast cancer worked and that her children understood it.

“Kids are just too smart. They just know when something’s not right. So I had to tell them. But like I said, the moment I actually told them using the comic book turned out to be one of the best moments of my whole breast cancer journey. It was a turning point for me. And it wasn’t just helpful comic books. They came in to see what it looked like, me getting chemo.

Of course then playtime at home became all about being in hospital. They would dress up and everything.

They went through the whole journey with me. We learned a lot together. We grew a lot closer as a family. And I think that my daughter will remember it too and always be careful about her own health. I was always quick to go to the GP and my nurse with any questions — when Professor Carney, my current oncologist, said I shouldn’t hesitate to contact him, I told him ‘I have  you on speed dial’! I hope that this way of thinking and not being afraid to speak up about health concerns has a positive influence on my daughter later on in life. I hope she’ll be as quick to go to the doctor if she notices something strange.

My son now, Gavin, wants to be a comedian and a nurse. So I know the whole experience also had a good influence on him!”

Caitriona and the family making Christmas pudding together, looking forward to the New Year!

“It was my first ever hospital visit. I was 18, always healthy. I’d never even been on antibiotics. But I found out I had a rare genetic condition called familial adenomatous polyposis and hundreds of pre-cancerous growths in my large intestine.”

Leanne Hammond talked to the Mater Foundation about her story. If ever you’ve been worried about how you’re going to keep things in your stride, then make sure to read the full interview!

Leanne Hammond has an incredible story to tell. At 19, she discovered 100s of potentially cancerous polyps in her bowel due to a rare genetic condition. She had to undergo major surgery her operation meant an ileostomy bag. At first, this was disastrous news. But Leanne would eventually set up a hugely successful blog documenting life with an ileostomy bag as a young woman and publish a book to help others. Her campaign to break the stigma around bags and raise awareness has featured in countless TV interviews, newspapers and has gone viral on social media.

Leanne wrote a book about her experiences called Trouble With My Genes. She’s a published author at only 22 years of age. And campaigns to end the stigma in society around ileostomy bags and change stereotypes about what it’s like to live with one.

But this sense of confidence and conviction was not there from the beginning. Looking at Leanne’s glam selfies, you wouldn’t know it. But she used to wrestle with crippling anxiety on a daily basis. Her surgery wasn’t a simple procedure. And she experienced anxiety-inducing complications to her health. She also had to adjust to life with an ileostomy bag without any idea of what that would mean for her lifestyle, her relationship or her friends.

Leanne’s story starts with a very traumatic, first ever hospital visit. It turned her whole world upside down.

“When I was 18, I had symptoms of bowel troubles like frequent swelling. It went on for a couple of months, almost a year, before I went to a doctor about it. We thought it might be my diet or a little IBS, so I went on a strict eating regime. But that didn’t work at all. Following that, I had my bloods done and then had to go to hospital for a colonoscopy. I remember everything happened so fast after that.

“I’d never even been on antibiotics when I went for the colonoscopy. And when I came out of the colonoscopy, it was to the news that my bowel was like bubble-wrap. There was a lot of potentially cancerous tissue growth.

They discovered I had familial adenomatous polyposis or FAP. A genetic condition. Despite the fact that no one in my family showed for the effects of this condition. My sister was straight away checked but I was the only one.”

Because Leanne’s genetic condition had lead to the growth of potentially cancerous tissue in her bowel, she had to have immediate life-changing surgery. The surgery saved her life. But at 19, Leanne had to deal with having an ileostomy bag. The stereotypes and lack of awareness around it had a huge effect on her perception of it as a disastrous event.

“I was devastated. It was just so hard to digest it. I was thinking to myself, this is my life changed forever. I didn’t know what food I could eat or what clothes I’d be able to wear or even what the bag would look like or what it would be like. I remember one of the days, I went on to Youtube and looked up a video of a girl changing one. I fainted.

I was so overpowered by how quick this change was going to affect my life. How little I knew about it or could really talk to anyone else about it. I couldn’t talk to someone else who had been through it about what the day-to-day would be like with this bag.

After the surgery, things didn’t really get better. Even when I got the bag and began to understand that it wasn’t going to have the negative impact on my life I’d imagined, I worried about what people would think of me for having it. I kept worrying about the he-said, she-said. I stayed in the house and only left once a week.”

Leanne has since written a book about her experience called Trouble With My Genes. It was an incredibly difficult time for her. Her anxiety over daily life with an ileostomy bag was compounded by a crippling anxiety over her health. Leanne suffered complications following initial surgery. She had to be rushed into an emergency operation four days later when doctors discovered she had a parastomal hernia and twisted intestines.

Leanne with a nasogastric tube in the Mater following complications with her initial operation. NG tubes are notoriously unpleasant. This was a difficult time for her.

As a result of so many serious health scares in such a quick series after her initial hospital visit for a colonoscopy, Leanne began to have serious anxiety attacks.

They crippled her self-confidence further because of the form they took. She experienced a physical pain below her diaphragm, around her abdomen, and thought it was another complication following initial surgery. She used to rush to A&E afraid that something was going wrong and in the best scenario she’d have to be weeks more in hospital and have further operations.

This is an excerpt from her book:

“I didn’t understand how a pain could be all just in your mind. I always thought anxiety was palpitations and breathing difficulties. I didn’t have either and I think that was the main reason I denied having it. Every time my anxiety started I automatically thought it was a pain in my stomach. Each time, my Dad said, it’s only anxiety I promise you, I had it all myself when I was younger. I got so annoyed because I didn’t understand how everyone could assume it was “just anxiety”. They hadn’t felt the sharp intense pain right in the middle of my stomach!”

Leanne realised after a number of false alarms that the pain was caused by mental anxiety. But realisation was just the first step. Recovery was next. But nothing worked. Not breathing exercises, meditation or counselling with a psychiatrist.

Nothing worked until Leanne started to write.

Writing for Leanne would become a way to champion awareness and end the stigma plaguing her about life with an ileostomy bag. Her first breakthrough came when the suppliers of her ileostomy bag asked her to do an anonymous Facebook post for their blog. They wanted her to give an insight into what she had been through and her current situation for their followers on social media.

“They had asked me for 1,000 words. I thought that was a lot at the start. But I struggled to get under 1,000 words when I started going, I was literally just writing and writing and writing.

I wrote two big paragraphs and remember sending them across to my sister. She came back straight away and told me I had to do something more. She pushed me by telling me I’d help so much people if I was brave enough to do it.

So I kept writing. I had this flood of words. I set up my own page then before posting anything. Because even if I’d accepted to start blogging, I still didn’t want anyone to know it was me. And I’d no photos on this page or anything.

My first blog post on the page was a Saturday evening. I said if I get one negative comment then that’s it, it’s over. The following morning when I checked, the post had been viewed maybe 50,000 times.

This photo links to Leanne’s original Facebook post, click it to read in full

Just like my health, it all happened so fast. The Irish Daily Mirror messaged the page and asked if I’d do a non-anonymous article. My Mam was getting so worried because I suffered from anxiety. But straight away what my sister had said originally about it helped me. I knew I was helping others and that was a powerful thing. It wasn’t like before when I was losing control in a whirlwind of events that swept me up. I was in control this time and I was the one writing the story and deciding what happened next.

So I decided to go live with it. I chose to tell people who I was. The Irish Daily Mirror wanted a photo of me. So I put one up on the Facebook page. Then TV3 got in contact with me about speaking on Ireland AM. So I booked myself in for speaking on air in front of thousands of people. Of course I was worried about getting an anxiety attack. But I knew I had to help others. And also, others were already helping me. In the 48 hours since putting up the first story, I was contacted by two people with my condition. I’d never spoke to anyone else with FAP before.

So it was working both ways. I was talking to people and receiving insight from others about how they go on with daily life for the first time. And people were contacting me, telling me, I’m going to have a colostomy what should I expect? And I thought about what a difference it would have made to me if I could have been the one asking those questions, if I’d had someone to talk to about it who’d not only knew the facts but had lived it.”

Leanne decided to put herself out there and to keep writing. She used Facebook to post blog updates. She went on TV. She did a feature for Cosmopolitan. And she went on to write over 60,000 words about her experience in a book called Trouble With My Genes.

Just like before, the transformation was almost instantaneous and remarkable.

Leanne became more and more positive. She began to leave anxiety behind. She went from providing insight into her experience as someone living with an ileostomy bag to championing awareness and becoming a role model for not letting it affect you too much.

She started taking ileostomy bag selfies. She wanted to overcome the stereotype that it was this large, bulky bag. Her ileostomy bag became the ultimate fashion accessory, one that had saved her life. So she decided to flaunt it. She posted glam photos so that other young women and men could see an ileostomy bag didn’t mean the end to going out and feeling fab about yourself.

“What pushed me was that I realised it wasn’t the end of the world. And I needed to help other people understand that. There are some girls out there with a bag and their boyfriends wouldn’t even know. But it does so much damage to keep that in and feel ashamed. I know because I remember being afraid, embarrassed and what that did to me. The worry kept me inside. I was stuck to my bedroom with anxiety when my friends were away on a gorgeous holiday. So it’s a point to me to go out now and show them it doesn’t affect how people think or even the type of clothes you wear.

In the same way, I wrote a book because if I’d have been handed a book when I went in to be diagnosed, I’d have read it. I’d have bought a hundred of them. Because when all you have are information sheets, you don’t get any sense of what life’s going to be like afterwards on a night out or a holiday abroad or with your boyfriend. That type of insight was lacking for me. And I wanted to put it there and to talk about normal life with a bag for other people who were facing up to that reality.”

Leanne at the launch of her book “Trouble with my Genes”, click on image to preview a copy online for sale

Leanne also found writing the book therapeutic. When she first experienced anxiety attacks, she tried counselling, meditation and breathing exercises. Nothing worked. But writing was a cure for her. She had set herself a target of 60,000 words. At the start, she was worried about reaching it. But as she continued to sit down and put everything down on the page, she stopped worrying. Writing was easy for her. It hadn’t always been. She’d never liked it much at school. But now, it came naturally.

“I never even told anyone I was writing a book at the start. I never pictured finishing it. But I pushed myself. I wanted to be able to hand it to someone who was going to face a colostemy or face anything serious. And it helped me so much, it was a therapy to me. To be honest, I think that’s why I’m now in the position I am today. It became my therapy, my way of understanding what I went through. It was such a blur back then when I went through it. It was only when I was writing it that I properly understood what had happened, how it had affected me and how it had affected everyone else around me.”

Leanne has since had surgery and no longer needs an ileostomy bag. She has learned to cope with anxiety and suffers from it less. She’s also been offered a second book deal. But right now, she doesn’t know whether she’s going to take it or not. The past few years have been a mad rush between her healthcare and the media. Now, she’s just learning to enjoy the moment and relax!

Leanne photographed here on a beautiful beach in Mexico

“We’re thinking of you this Christmas!” That was the wonderful message from students with the Localise volunteer programme to everyone in the Mater Hospital over the festive season. 

These wonderful students with the Localise Volunteer Programme made a gift of 300 Christmas Cards to our staff and patients for the festive season

Christmas is an incredibly busy time at the Mater Hospital. So it was wonderful to get a visit today from a group of students from St Catherine’s Primary School through the Localise Volunteer Programme. They made the gift of a Christmas hamper and 300 hand-made, beautifully decorated Christmas cards and Christmas decorations to patients and staff of the Mater Hospital. Especially the senior citizens and geriatric patients of the Mater and all the hospital staff who care for and support them.

Over the last 10 weeks, these young volunteers have been trying to think of ways they can be of service to their local community. They’re primary school students of St Catherine’s Primary School in Cabra and they’re members of the Localise Volunteer Programme. Localise is a registered charity programme in partnership with schools nationwide to help young people make a difference in their local community. As part of this programme, these young people realized that loneliness and isolation can be a problem for people spending Christmas in hospital, especially elderly patients.

“Thinking of you this Christmas” is a wonderful message of Peace, Love and Joy from the young people of Cabra Localise to the patients and staff of the Mater Hospital. There are now 300 beautiful, hand-made Christmas cards for people who need a little magic over the holidays. And we’d like to thank these young volunteers for going out of their way to make that positive difference to their community.

Merry Christmas and a Happy New Year!

 

We were lucky enough to have a performance of Christmas carols after being presented a wonderful box of cards

We’d like to say thank you to everyone who bought a Christmas Raffle Ticket at our stand in the Mater Hospital!

Christmas is an incredibly busy time at the Mater Hospital. That’s because patients who need heart and lung transplants can’t wait. Neither can people with cancer or other life-threatening conditions. They need their treatments to continue as if it were any other day. So if you’re reading this and you donated to us by buying a Christmas Raffle ticket, thank you very much!

We had a draw for the winners of the Christmas Raffle this afternoon at our stand in the Mater Hospital. The prize for 3rd place was a hamper of Christmas Goodies donated by the superbly generous Paddy Breenan, who is a longtime volunteer at our hospital stand. The prize for 2nd place was a hand-made Wooden Church decoration donated by Paddy’s friend, Leo. And the prize for first place was provided by the amazing staff at Avoca and is a Christmas Hamper from them.

3rd to 1st Prizes, Left to Right: Christmas Hamper from Paddy Brennan, Hand-made Wooden Church from Leo and Christmas Hamper from Avoca

Our volunteer Michael drew the winning tickets from a mix of all the raffle tickets purchased over the past weeks. All of the donations from these tickets will go to help patients like those forced to be in hospital over the Christmas holidays. If you bought a Christmas raffle ticket, then you are directly responsible for helping people home faster to their families and providing funding needed for new hospital machinery and pioneering medical research. So sincerely, thank you from all of us at the Mater.

The winning Christmas raffle tickets

#144 – 1st Prize Avoca Hamper – Mr John Carley
#22 – 2nd Prize Handmade Wooden Church – Ms Mary Rochford
#140 – 3rd Prize Christmas Hamper by Paddy Brennan – Mr Thomas Carr

To everyone else who entered into the Christmas raffle but did not win a prize, you have contributed valuable donations that will make a life saving difference to someone either over the Christmas holidays or afterwards. You can read more about patients whose lives and care you’re helping to improve at this link to their stories. We interview patients every week to ask them about their experiences at the Mater and the life changing difference made by our donors support. You can read about the difference you’re making to a patient in their own words at our Humans of the Mater section.

Merry Christmas and a Happy New Year from us all at the Mater Foundation!

Michael and Elizabeth drew the winning tickets at our stand in the Mater Hospital. The draw was from a mix of all Christmas Raffle tickets sold over the past few weeks. Thank you so much for your support!