Resolute Lisa Refusing To Allow CF Hold Her Back

Lisa Talty is looking forward to this weekend’s John Minogue Memorial Run in her native Miltown Malbay, as the community comes together to support four local charities including Clare Cystic Fibrosis which is close to her heart.

The 28-year-old has lived with CF since being diagnosed as a baby, but doesn’t feel the term “suffers from” is one that applies to her.

“I couldn’t really say when I first became aware of CF because this has always been my life. Something wasn’t right from the day I was born because I never cried. My mother Carmel felt something was a bit off, and I wasn’t thriving. There are pictures of me as a baby against a white wall, and to be honest you would nearly think I was part of the wall. Mam went all over looking for answers and was told several times she was imagining things. One doctor told her to stop being a hypochondriac first-time mother, even though she had my sister at home so you can imagine how well that went down. I was hospitalised with pneumonia then and we met a great doctor named Dr. Carroll. Something triggered in him and he tested me for CF and suddenly we had an answer. From that point forward, this just became our lives. My parents were told I would not survive past one-year old and the long-term prognosis for CF at the time wasn’t great so they were told that they would only have six more months with me. My mother refused to accept that and was determined to do everything to ensure that I had as normal a life as possible, and that’s what they did. Since then, it has become just a whirlwind of treatment but I have never known any different, and the life I have is just normal to me. Keeping on top of it is a full time job, but it’s not the only thing I have going on and I don’t let it become the only thing I have going on either” she smiled.

2016 proved to be one of the most eventful years in Lisa’s life to date. A dream trip to Australia turned into a nightmare as she was hospitalised in Sydney after falling ill soon after arriving with her partner Noel. It led to a critical few weeks as she fought to stay alive, but her strong-willed nature saw her come through that ordeal with a positive outlook.

“One of my big things in life is that I love travelling, so much so that at this stage my father Gerard wants to revoke my passport I think. I had been to Australia several times before that, and everything was going to plan. When travelling with CF, you have to alert airlines and get doctors clearances, so all that was in order. We got as far as Abu Dhabi and everything was going fine. Something happened from that point until we arrived in Sydney but there’s still no definitive answer to what is was. The flight was delayed from Abu Dhabi, so sitting in that heat in July may have become too much for my lungs to handle. By the time we landed I knew something was wrong, but I was just putting it down to jet lag and feeling tired. For the next 36 hours I just basically slept and couldn’t really catch my breath. My CF would present very much like asthma symptoms so I thought that was the reason behind it. I pumped myself full of insulin and it still wasn’t making much of a difference. An ambulance was called and I was brought to A&E and ventilated. My parents were called and told they needed to get out as soon as they could because there was a fear it wouldn’t end well. I was in hospital for five weeks and I probably shouldn’t have survived it, but I walked out of that hospital and I have come back an awful lot stronger since” she said defiantly.

For most people, an experience like that would be enough to put them off travelling for good, but Lisa is not like most people. After finally getting strong enough to make the journey home to west Clare, it wasn’t long before the travel bug bit again as she made the journey to Italy just two months later to see her partner’s sister getting married, much to her father’s dismay. She is adamant CF will not stop her from leading the life she wants.

“People with CF have a real resilience about them, and you can’t let things stop you and define who you are. It was a fluke event that happened and that’s all it was. You can’t let that scare you into not doing the things you want to do. Even before I came home, I had flown to Cairns, Melbourne and New Zealand on different trips. We didn’t really tell anyone we were coming home because that journey was always going to be the worry so I didn’t want to build it up into this big moment. The aim initially was to be back during the summer but my niece’s communion was on in May. I had always promised her I would be there so I was determined that I would be, and the day I landed was my mother’s birthday which was nice too” she noted.

With groups like Clare Cystic Fibrosis working tirelessly to provide supports to people with the condition in the county, resources and funding are often so critical. The technology available to Lisa while she was in hospital in Australia is not commonplace in Europe, and played a key role in ensuring she will write plenty more chapters in what has already been an incredible life story. There have been huge strides made in the availability of medication like Orkambi, but Lisa feels it’s the personnel in the healthcare system that are the key components for the future.

“The team that I have looking after me when I go for treatment are amazing people and they really keep you going. They know we are long-term patients and that’s the same for any long-term illness. It’s more than just going in to see a consultant and leaving again. It’s actually like a long-term relationship, and that is hugely important. The drugs and the system are important too, but the people behind it are the key. You can have the greatest systems in the world, but if you don’t have the people to back it up then it’s no good. We are lucky in Ireland that new CF drugs are being funded and it has been a hard road to get here, but CF is gene specific. That means not everyone can benefit from the likes of Orkambi and I am one of those. CF is still here and it is still going to take lives and be part of people’s lives. My life hasn’t changed in the last two years despite all the fighting to get these drugs. That’s why we need to keep developing our hospitals and the people in them because at the end of the day, you will still need to see a team in hospital. The drugs will reduce the amount of times you go there, but it doesn’t completely eradicate it” said the LIT graduate.

The John Minogue Memorial Event is next on the horizon for Lisa and all the Talty clan in Miltown on Sunday, while you can be guaranteed they will be waiting on to see how the Cusack Cup clash against neighbours Kilmurry Ibrickane unfolds on Sunday afternoon in Hennessey Park.

Rumour has it that Lisa is already planning more overseas adventures in the coming months, but it remains to be seen if her father finally gets to confiscate the passport.

“I think he knows I will always come back. He knows I am a Miltown home-bird and I am loyal to the cause. You can’t allow yourself to stop, and I don’t think I will until I eventually run out of places I haven’t seen” she laughed.