Amanda on balancing life and CF

By Amanda Pusztai

Hi, I’m Amanda, I’m 38-year-old and as you may have guessed, I have cystic fibrosis (CF).  

I call the Port Stephens area of NSW home, however it wasn’t always, I was born in Devonport, Tasmania and spent the first 18 years of my life living there.  

On reflection, I had a pretty incredible childhood with CF not really impacting my days too greatly.  

I was an active child, spending most of my time in or around the water. This was my happy place; If I wasn’t squad training at the local pool, I was in the ocean training with little Nippers or hanging out beachside.    

My days were spent thriving, my lungs where happy, my health was great – life was awesome.  

That’s the thing with CF though, just when you think you ‘ve mastered the delicate balance it requires to keep your condition stable, you realise you haven’t.  

I was 18 years old when I moved to NSW, I met the love of my life almost straight away and have been living here ever since. My now-husband, Dave, has been my rock through many of the challenges CF has caused us to face. We share the same dreams, the same fears and every day I feel truly blessed for the love shared between us.  

I was 25 years old when I had my first lung related hospital admission. My weight had dropped to its lowest – 48kg and everyday things had become much harder to do. I remember in the 12-24 months leading up to this, my cough started getting worse and more frequent. I was taking oral and nebulised antibiotics every other month, and really started to feel the impacts of constant coughing and reoccurring lung infections.  

I remember this hospitalisation like it was yesterday, how confronting it was and how scared I felt. My nightmare was coming true; I hadn’t managed to escape the trauma of this condition. It had finally taken control and now it was my turn to experience what I’d witnessed so many others go through.  

I made a promise to myself during that admission that I would do everything I could to keep myself well moving forward. This involved dietary changes, physical exercise, and a new daily treatment regime, involving multiple nebulisers, puffers, airway clearance and a concoction of medications.  

At 27, Dave and I married. We had a beautiful ceremony among the grape vines at a vineyard in Mudgee, NSW and it was honestly one of the best days of my life. The sun was shining, my health was stable, and we were surrounded by the people we love – what more could a girl ask for.  

As the years passed, I really started to notice that as I aged, my health was getting harder and harder to maintain. I ebbed and flowed between being well and unwell. My early 30’s brought with them my greatest challenges yet, reoccurring lung infections, hospital admissions, home IV’s and the dreaded lung bleeds (If something was going to break me, it was these. The feeling of trying to breath while your lungs fill with blood is horrific, I’m not going to lie). 

These challenges were real and the days were tough, but keeping with the promise I made to myself, I would continue on doing everything I could to try and turn things around.  

The reality is though, that CF will just keep taking and taking and at times your best just isn’t good enough. 

So, let’s fast forward a few years ahead, to 35-year-old me birthing the most divine little person into our world – my darling daughter Ruby. 

After years of waiting, dreaming and praying, Ruby was finally here (That’s a story for another day though). She wasn’t quite 2 when our second miracle arrived – Trikafta. We had heard of this incredible drug and the changes it was making among the CF community, but we really didn’t understand what this would mean for our family until it was unfolding.

Ruby doesn’t know the life I had before Trikafta, she sees her healthy mummy doing all the things I dreamt of in the years earlier. 

My life has been a bit of a mix of ups and downs and honestly, I couldn’t imagine riding the highs and lows without my family by my side. My mum, dad, sister and husband who support and encouraged me in everything I do, always guiding and listening without judgement.  

To say I’m excited for my future is an understatement, there is a lot of fun to be had with this little family of mine and I can’t wait. 

Big Love  

Amanda 

xxx