"I now live an amazing life, which I always feared to dream of when I was younger" - Sara's story

Diagnosis

When I was born, my parents didn’t know anything about CF. They only learnt about it once I was diagnosed at eighteen months old. My mum struggled to find a doctor that could diagnose me correctly and was often told that I had a case of toddler’s diarrhoea and that she was being over-concerned. It wasn’t until she took me to a paediatric consultant who looked at my fingers and noticed they were clubbed that I was finally diagnosed with CF after doing a sweat test.

Getting NTM 

Growing up, I would say I was a very healthy child, and CF was not a huge factor in my life.

But, once I reached the age of sixteen, my health started to take a turn. I was called in for some IVs and admitted into hospital for the first time as I had grown Pseudomonas aeruginosa. Over the following years, my health declined, and I started to have difficulty breathing. I began to experience other symptoms like fevers, coughing attacks, and being unable to get out of bed and continue with my normal daily routines.

My infection markers were sky high, and a CT scan confirmed there was a lot of scarring on my lungs. Doctors were still unsure about what was causing these symptoms and said they needed to do a bronchoscopy, where they put a camera into my lungs and took a sample. From this, they found I had been growing nontuberculous mycobacteria (NTM).

Treatment

When I was diagnosed with NTM in 2010, there was little known about this bacterial infection and how to treat it effectively. Doctors had told me it was a very serious infection, and that’s when life as I knew it began to change. NTM is resistant to most antibiotics and so requires an intense regimen of treatment. To tackle this bug head-on, I first needed a lengthy course of IVs; however, to do this meant they needed good and reliable access to my veins. My veins were pretty poor at the best of times, and so a portacath was suggested. After fitting my portacath, I had a small puncture on my right lung, which had caused my lung to collapse - the doctors seemed very surprised at this as there was only a 2% chance of this happening! I then had to have a chest drain inserted so my lung could inflate again.

After this, I was in hospital on intense IVs for around five weeks to give myself the best chance of clearing NTM from my lungs, but unfortunately, it still remained. My lung function had dropped, but the hardest news was knowing that I would no longer be accepted for a lung transplant should I ever need one.

Going forward, I required regular IVs once every 2-3 months for a minimum of 2 weeks. As little was known about NTM, safety measures to prevent this bug from spreading felt very intense. From then on, I had to be isolated and restricted from the CF ward and most parts of the hospital grounds. For the duration of my stay, I had to stay in a negative pressure room with my doors shut at all times. Anyone who wanted to enter my room had to be fully gowned, gloved and wear a facemask. This felt very frightening and lonely at times, but it was the safest option to stop others from being infected.

NTM still continued to grow in my lungs, and in 2012, my doctor suggested I do at least a 3-month course of IVs. During this time, I tried to continue as normal. However, the treatment was very intense and made me extremely sick. I remember desperately trying to live the life of a normal teenager but masking the fact that I was seriously ill.

The burden of treatment took its toll, and the doctor stopped my treatment as I had lost a lot of weight, wasn’t eating, and felt very weak. In the end, my consultant told me that NTM may be something I would have to live with, but she had known people who had lived with it for ten years – which gave me hope! Thirteen years later, and I still grow NTM, but my lung function has stabilised. I now live an amazing life, which I always feared to dream of when I was younger.

Kaftrio and my current health

In 2020, Kaftrio and Kalydeco was the miracle that changed my life and many others with CF. Since then, I have not been admitted into hospital for nearly four years and only require IVs once a year, which I can do from home.

After a bumpy 31 years, I have graduated from University with an MSc and have a great career in medical writing. I am now married, and together, we have started a new life in Oxfordshire with our fur baby Indy. My husband and my family have been my biggest support, and I am so grateful for everything they have done to get me through those tough times.

You can read more about NTM in the Trust’s factsheet. Please also speak to your CF team with any questions about NTM and your healthcare and treatment.