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Growing up with CF

Since before I can remember I have always been aware that I was different. Things that seemed normal to me I soon realised were not normal for other kids. At primary school me and my sisters would be called up in the middle of the canteen to get our enzymes (tablets we need to take with food), my Mum would line us all up on her double bed to do physiotherapy at night and days off school were taken to visit the hospital in Belfast to get our lung function checked.

Even though this awareness sometimes made me feel a little uneasy, I rarely believed that having Cystic Fibrosis would stop me from living the life I wanted to live. And it hasn’t for the most part. When I tell people what my daily routine includes (or should include, I’m a bit naughty sometimes) or about the disease I was born with, I can see the flash of pity in their faces. This doesn’t bother me because not only is it a natural reaction, it’s all I’ve ever known.

I was diagnosed with CF when I was a few months old. My parents were in their twenties and understandably terrified by the diagnosis, not having heard of the disease before. Thankfully there was no Google back then because I’m sure that would have led to full blown hysteria!! They learned as much as they could and managed to get on with it despite the uphill struggle that lay before them.

And I was one of the lucky ones. After the diagnosis and once they had my medication stabilised, I thrived like any normal baby. In fact, I was an absolute tubster or a ‘barrel’ as my Mum lovingly recalls. Children with CF often struggle to put on weight because their body isn’t equipped to absorb nutrients effectively but thankfully that has never been an issue for me.

My two sisters followed soon after me and tragically they too were diagnosed with CF. Having three children with CF is extremely rare as parents who are carriers of the CF gene only have a 1 in 4 chance of having a child born with CF. Not exactly a gift to be grateful for but again, they managed to get on with it.

We had a very normal childhood despite the odds that were stacked against us. When I was born, the life expectancy was around 15 yet my sisters and I never had to endure any serious hospital admissions when we were young which was very lucky. We took part in everything; all the Sports Days, school trips, holidays, without much trouble at all.

I was 11 when I was first hospitalised and 13 when I contracted Pseudomonas, a common infection that a lot of CF patients eventually contract. I’m almost positive that I contracted it while in hospital because patients had a common room where we could all socialise and I suppose feel a little more normal. This is shocking to think back on now because cross-infection is regimental in hospitals these days!

The hospital admissions became quite commonplace during my teens but yet I didn’t fear CF, just the needle that was used to thread the IV line up my arm that administered the antibiotics. Hospital was a time to get spoiled, avoid schoolwork and binge watch TV shows!

It wasn’t until my sister Amy was diagnosed with CF related liver disease that I understood how CF could take something from us, the family that managed to do so well for so long. Amy was the middle girl, the dark eyed and dark haired beauty that was the gentlest of us three. She was a year and a half younger than me and we clashed constantly over the years, like chalk and cheese in so many ways.

Amy was 11 when she started showing symptoms of liver disease which were horrendously scary to witness and I can’t imagine the fear she must have experienced. To be honest, it’s very difficult to think about how she must have felt because it riddles me with guilt.

She managed to battle liver disease for 9 years. Suffered countless surgeries and procedures to manage the varicose veins in her oesophagus that were continuing to bleed. Flying back and forth from Birmingham and seeing doctor after doctor. As if life as a teenager wasn’t hard enough, Amy had a whole mountain of crap to deal with more than anyone I know.

And then things got much worse. She battled hard but on a rainy Friday morning in November 2010, we lost Amy. She was 20 years old.

Our family has never been the same since and we have not tried to get on with it. We have felt it all. Our loss has consumed us and defined us forever. I miss her every day and I am still baffled by how the grief can come and go in uncontrollable waves. The emotion I feel the most is probably guilt. I think this is normal. Or I hope that it is.

Since her death I decided to live as much as I could. I graduated from University, watched lemurs dance between trees in Madagascar, saw a rainbow rise over Uluru, followed cheetah prints on safari in Africa, walked through the jungle around Angkor Wat, rode horses through Cuban tobacco fields. I have refused to let CF define or hinder my life.

In many ways, not letting CF define me has improved the quality of my health. I strongly believe that the mind has so much control of the physical body and that if you put your efforts in to living an active, happy, fulfilling life then your body reacts to that. But I am also lucky that I have a strong body that has been able to withstand a lot of medication and countless infections.

I contracted a nasty bug called cepacia when I was 20, the bug that no CF patient wants to get for it is extremely resistant to most antibiotics. The bug resulted in me not being able to come in to close contact with my sisters for years. I wasn’t allowed to hug Amy until they knew that she would be passing away.

My youngest sister Shannon has since contracted cepacia more than likely from myself because after losing Amy we needed each other more than ever. She was 17 when Amy passed away and dealt with a lot more than a typical teenager had to like Amy. Her bravery still astounds me.

I’m 27 now with lung function that sits at around 78%. I was hospitalised in June for the first time in 3 and a half years. I am incredibly lucky. Right now my life is good, I go the gym 2/3 times a week, I go walking with my friend every week, I try to be as active as I can but not just because I know it helps my health but also because being outside and amongst the world makes me happy.

The future can be a scary thing but yet I don’t know another person my age who isn’t afraid of what the future holds. None of us knows what’s around the corner in life so we have to enjoy what’s happening right now. Look around us and figure out if we’re living the life we want to live and if not, then knowing we have every power to change it. I know this because I’ve had a 27 year headstart.

About Author

I'm Alex, the writer, photographer and creator of The Full Shilling. I started writing as a way to share all my favourite places in Ireland and the list just keeps growing! My aim is that you'll find somewhere new to explore and you'll make some great memories along the way. Happy reading!

63 Comments

  • Alex Donnelly
    2 years ago

    Thank you Una, it feels good to talk about these things xx

  • Una McCrory
    2 years ago

    Beautiful writing, pared back to the loving soul that you are. Very moving and humbling

  • Alex Donnelly
    3 years ago

    Thanks so much for taking the time to read it Helen and for the kind words. It was a very personal post to share but I'm so glad I did! x

  • Helen
    3 years ago

    This is such a powerful blog post, Alex. I'm so sorry for the loss of your sister. X

  • Alex Donnelly
    4 years ago

    Thanks so much for the lovely comment Tracy! Really glad you liked reading it :)

  • Tracy
    4 years ago

    What an excellent piece of writing which broke my heart! I admire your honestly and your determination to have a fulfilling life xxx

  • Alex Donnelly
    4 years ago

    Thanks so much for giving this a read Donna, means a great deal that you enjoyed it! Very happy to have met you.

  • Donna Blythe
    4 years ago

    Alex, I knew there was something special about you first time we met. I'm so pleased our paths crossed.

  • Cat McG
    4 years ago

    Alex, im completely blown away by this. You have always been a true inspiration and I am incredibly lucky to have you as a friend. It is also a lovely tribute to Amy who we all miss and treasure such great memories of. Keep up with that determined mind and love for life, along with the equally inspirational Shannon. We could all learn something from your approach. Keep sharing your insights and experiences, i totally agree....a world famous author in the making. See you soon xxx

  • Alex Donnelly
    4 years ago

    Thanks so much for reading Orlaith and for such a lovely comment. I know, it's such a difficult thing to manage and I don't think a lot of people knew the extent of her symptoms, she was so so brave. Hope you're keeping well over in Scotland and thanks again :)

  • Orlaith Conlon
    4 years ago

    Very inspirational story Alex. Your courage is truly outstanding. I work in gastroenterology and varicies are horrible especially for someone so young! I'm sure your sister would be very proud of you x

  • Alex Donnelly
    4 years ago

    You know just as well as I do Emma that life can be incredibly tough sometimes, it's good to talk about it though and share these things. Thanks so much for reading and the good luck! I'll make sure and keep posting :)

  • Emma Daly
    4 years ago

    You are such an inspiration to everyone Alex, an emotional blog to read.. Truly touched reading this and will continue to do so ????? good luck with your next venture I hope it will be one of many!! Xx

  • Alex Donnelly
    4 years ago

    Thanks so much for reading Kat! Lots of love xx

  • Kathryn Cheshire
    4 years ago

    What an emotional blog, Alex, beautiful writing. Lots of love always xxx

  • Alex Donnelly
    4 years ago

    Thanks Rach! Can't wait to see you in a few days!! Xx

  • Rachel Gill
    4 years ago

    Amazing read, love you for you x

  • Alex Donnelly
    4 years ago

    Thanks Ave! It was a bit scary but I can't get over how positive everyone has been, it's been so lovely! Cheers for reading too and so glad you liked it :)

  • Aoibheann Hughes
    4 years ago

    Brilliant blog post Alex - you're really an ispiration. It takes guts in this wee country we live in to be open about your feelings, so it's very refreshing to read your blog. Please keep posting because I'll keep on reading!

  • Alex Donnelly
    4 years ago

    Thanks so much for reading Slipper!

  • Alex Donnelly
    4 years ago

    Thanks for reading Stewart, really lovely to see such positive feedback. Need to get down to see this new addition soon! Will get Moff to coordinate a wee visit soon :)

  • Alex Donnelly
    4 years ago

    Thanks so much for reading Tyrone! Hope you're well :)

  • Alex Donnelly
    4 years ago

    Thanks so much for reading Anne!

  • Alex Donnelly
    4 years ago

    Thanks Carl! I know I can't get over all these lovely comments - all so positive! Cheers for reading :)

  • Alex Donnelly
    4 years ago

    Aw Orlaith would ye quit! So happy you liked reading it though and thanks so much for sharing - so lovely xx

  • Alex Donnelly
    4 years ago

    Thanks so much Frances for the lovely comment - so many memories up in Lindseys Hill! I hope things are well with you and the family and would love to try and catch up sometime I'm home. Thanks again for reading!

  • Alex Donnelly
    4 years ago

    Thanks so much for reading MJ! So nice to think you guys can read my ramblings half way across the world! Lots of love to you all, cuddles to Sitty and Taj xx

  • Alex Donnelly
    4 years ago

    Thanks Laura!xx

  • Alex Donnelly
    4 years ago

    Thank you so much for the lovely comment Helen - you were such a big part of our childhood and we were so lucky to have you. Thanks for reading!

  • Alex Donnelly
    4 years ago

    Thanks for reading Kate! And really appreciate you sharing as well, such positive feedback! xx

  • Alex Donnelly
    4 years ago

    Thanks Terri, we had a great childhood running about! Thanks for sharing as well :)

  • Ciaran Kelly
    4 years ago

    Alex your an absolute legend. Keep the blogging going

  • Stewart
    4 years ago

    Thanks for sharing Alex, must have been very hard for you and your family but I admire your attitude to life. God bless

  • Tyrone
    4 years ago

    Beautiful writing Alex - You have always been amazing! Take's alot of gut's to share such personal tragedy and thoughts. I really wish you all the best :) with love x Tyrone.

  • Anne Rutledge
    4 years ago

    Beautifully written Alex and thank you for sharing. You are an inspiration.

  • Carl
    4 years ago

    Really good read Alex, your blog is really interesting overall, great to see so many nice comments. Keep in touch, your cuz. C

  • Orlaith Cullen
    4 years ago

    Your an amazing person Alex and an inspiration to all, thank you for sharing xx

  • Frances Donaghy
    4 years ago

    Alex your story is an inspiration to all those suffering from cf. I have very fond memories of you growing up and so glad that you are embracing life the way we all should. Let everyone's motto be live for today and love the gift of life. Take care and next time you're in Armagh we'd love to see you.

  • M Arsenault
    4 years ago

    Wonderful piece Alex. Thank you for sharing your story, keep writing! Xxx big love from your Exmouth family :)

  • Laura
    4 years ago

    Love it Alex good for you honey xxx

  • Helen McLaughlin
    4 years ago

    You are brilliant in every way Alex, an inspiration to so many. Being positive has always been an important part of your life, which hasn't been easy. Well done. Lovely to have shared many experiences with you Amy and Shannon over the years. Keep up the writing , an author in the making.

  • Kate Hughes
    4 years ago

    Such an amazing and inspiring blog Alex, well done u! Xx

  • Terri McAleer
    4 years ago

    This is such a touching read Alex, it brought back so many memories. CF has never got in the way of any of the craic we all had. I hope this reaches many xx

  • Alex Donnelly
    4 years ago

    Ach thanks so much for reading Nicola! xx

  • Nicola Hare
    4 years ago

    Alex you're a true inspiration. You should be so proud of yourself! Lots of love xx

  • Alex Donnelly
    4 years ago

    Cheers Tangney! Hope you're keeping and thanks so much for reading! x

  • David Tangney
    4 years ago

    Loved it Alex, so much admiration! All the best X

  • Alex Donnelly
    4 years ago

    Love you too Helen! Thanks for reading xx

  • Alex Donnelly
    4 years ago

    Grainne it makes me so happy that you enjoyed reading this! CF is a bumpy road but it has allowed me to see and appreciate life in ways so many others take for granted. Hope your husband is doing well, sending lots of love xx

  • Alex Donnelly
    4 years ago

    Aw thanks so much Sammy! Such a lovely comment :)

  • Alex Donnelly
    4 years ago

    Of course I don't mind you sharing - so touched that you'd want to! xx

  • Alex Donnelly
    4 years ago

    Don't think I'm too brave Keelin but it was a wee bit scary sharing this! Thanks for giving it a wee read :)

  • Alex Donnelly
    4 years ago

    Thanks for the lovely comment Kimberly :) would love a catch up with you girls soon xx

  • Helen
    4 years ago

    I'm so proud of you,Alex.. love you xx Helen

  • Grainne
    4 years ago

    Having a husband with CF has made this an even more beautiful and inspirational story. Well done for sharing, wishing you continued good health and happiness for many years to come. Grainne x

  • Sammy
    4 years ago

    Alex ur amazing I am reading this with tears in my eyes. Your positive outlook is outstanding and I really admire you for it. Your amazing ?

  • Ciara Rafferty
    4 years ago

    Alex this was an amazing read.. Hope you don't mind me sharing it x

  • Keelin
    4 years ago

    Well done Alex, you are so brave! ?

  • Kimberly
    4 years ago

    Such open and honest writing - amazing Alex. Your doing great xxx

  • Alex Donnelly
    4 years ago

    Thank you Rebecca :) so chuffed you like it x

  • Rebecca Leemon
    4 years ago

    This is amazing Alex, well done. So inspiring x

  • Alex Donnelly
    4 years ago

    Thanks so much for reading Caroline! It means a lot that friends can read this :)

  • Caroline Monaghan
    4 years ago

    You are amazing Alex?A real inspiration your parents and family must be so proud of you.

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