“Living with CF is a journey of resilience, adaptation, and hope”

Lissy was diagnosed through the heel prick test when she was just 5 weeks old. A sweat test followed, and she was officially diagnosed on December 5, 2006. From that moment, as many readers of this blog will know, life was never the same again. Navigating the world of CF has been a journey of challenges, but also of resilience and love.

I have been navigating life with CF for many years, and my journey has been shaped by both the challenges and the occasional triumphs that come with managing this condition. Alongside my own experiences, I’ve spent significant time in hospital settings with Lissy. She has had to have IVs every four months since she was 9-years-old due to non-tuberculosis mycobacterium (NTM), which took three years of gruelling treatment to clear. These experiences have deepened my understanding of what it means to live with CF and inspired me to share our story.

Treatments are time-consuming and require meticulous planning

Lissy goes to college Monday to Thursday to study business. In the mornings, I usually wake up first, followed by her younger sister Florrie. I start by clearing away anything left from the previous night’s treatments. I prepare Lissy’s tablets, which include Omeprazole, Tranexamic Acid (for occasional blood coughing episodes), Sertraline (for severe health anxiety), Azithromycin (on specific days), and sometimes Flucloxacillin for Staph infections. Lissy also uses a Tobi Podhaler one month on, one month off. I help by opening it for her and preparing her feeding pump, rinsing syringes and tubes, ready for the day ahead.

Lissy wasn’t always consistent with her physio (airway clearance) when she was younger. Thankfully, she is much more disciplined now and understands the importance of her routine. Before heading to college, she uses her Aerobika attached to her nebuliser for physio and always takes her Creon with her, although she still occasionally forgets!

A significant change in our routine came last year when Lissy decided to have a feeding tube fitted. This has been a game-changer, allowing her to gain weight and reducing some of my constant worries about her eating. While it took time to adjust, it’s now part of her daily routine, and she has her ‘fixy’ feed twice a day. It’s given us a bit more peace of mind, though I still cook her favourite meals, often on repeat, and try to make eating as stress free as possible.

The treatments are time-consuming and require meticulous planning. From setting aside time for nebulisers to ensuring medications are on hand wherever Lissy goes, our days revolve around these routines. This often means sacrificing flexibility and spontaneity. It’s a constant balancing act, but one we’ve learned to adapt to. 

To me, treatment burden is more than the physical effort of completing daily regimens. It includes the emotional and mental toll of constant vigilance, the impact on relationships and social life, and the never-ending balancing act of managing CF alongside everyday responsibilities. It’s the weight of knowing that no matter how diligent we are, CF will always demand a significant part of our time and energy.

I wish I had been kinder to myself 

Lissy’s first hospital admission was when she was five years old on the Puffin Ward at Derby Hospital. An X-ray revealed Atelectasis (partial lung collapse), and she needed two weeks of IV antibiotics. This was a challenging time for me, especially as I was caring for Florrie, who was only 5 months old and still breastfeeding. 

Our next significant hospital stay was in 2015 at QMC Nottingham when Lissy was diagnosed with NTM. We spent three weeks there, leading up to Christmas. This was one of the most emotionally taxing times for me. I struggled with anxiety about what the doctors might say and dreaded the sound of aprons rustling outside the door. Lissy, then nine, didn’t fully grasp the seriousness of NTM and just wanted to go home. Reflecting on that time, I wish I had been kinder to myself and sought support earlier.

Adding joy and balance to our lives

Life has not always been about CF. We’ve made a conscious effort to inject fun and laughter into our lives, and we both have the same weird sense of humour. After Lissy’s first NTM admission, I decided I wasn’t going to let hospital stays be defined by stress and anxiety. Instead, I prioritised finding joy where we could. I achieved this by looking after myself so I could be stronger for Lissy. There also comes a point where you must accept life the way it is, make the best of the situation, and find joy and fun where you can.

As a mother of two, I have also had to balance being present for my younger daughter, Florrie, who is now 13 and doesn’t have CF.  I’d make a point of nipping home during hospital stays to spend time with her, bring back clean laundry, and, of course, some treats! 

Living with CF is a journey of resilience, adaptation, and hope. While the challenges are significant, the advancements in treatment and the support from the CF community provide reasons to remain optimistic. By sharing stories like ours, we hope to inspire continued efforts toward easing the burden of CF for families everywhere.

We know that Mother’s Day can be tough for lots of people, for a variety of reasons. Your CF team may be able to provide emotional support or direct you to other sources of support.

You can also contact our Helpline on 0300 373 1000 or at [email protected] if you'd like information or support, a listening ear, or just to talk things through. 

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