Kiah’s Journey with Trikafta

Hi Kiah, can you tell us a bit about yourself?

Hi, my name is Kiah. I have CF and have just turned 17. I live with my Mum and Dad and my 8 year old brother who also has CF. I am in year 12 this year and I am Head Girl at my school. My favourite subjects are Business and Enterprise and Art. I am also studying a diploma of commerce at TAFE and hoping to study marketing psychology at uni next year. I work at Adventure World as a lifeguard – I absolutely love my job and the people I work with – it is so much fun! I also run my own business making dog accessories (when I am not sick or working or studying) and I love to draw. I have an 18 month old border collie x koolie, called Splash who I am training as an assistance dog and who I like to make lots of pretty accessories for. I have recently bought my own little car and hoping to get my drivers license soon!

You recently started on Trikafta. Can you tell us a bit about the road to get here?

Over the past few years my health has been declining fairly consistently. My younger brother  started taking Kalydeco when he was only 3 and so I had seen first-hand how Kalydeco changed his life and reduced his CF symptoms to almost zero. I had heard about Trikafta a few years ago but unfortunately I did not qualify for the trials. So, I have spent the past few years watching, waiting and hoping that one day I would get the opportunity to take a ‘magic’ pill just like my brother, all the while getting sicker and sicker.

In February I became quite unwell and was admitted to hospital, but unfortunately reacted to a number of antibiotics and so I didn’t really improve at all. By April I was really sick and went to clinic to see what my options were. Unfortunately, due to being allergic to so many antibiotics, there was little that could be done. Thankfully Dr Schultz is absolutely amazing and was able to organise for me to start taking Trikfafta early. A week later, on the Thursday before Easter, my mum got a call on saying that my Trikafta was ready. We cried all the happy tears! I had to be admitted as I have a bad habit of reacting badly to medications and the team had managed to organise a bed for me straight away. My mum came and picked me up from work and took me straight there. Hence why in the photo I’m still in my lifeguard uniform!

How were you feeling about starting Trikafta?

I was very nervous and excited about starting Trikafta. I had been waiting for it for so long that I had begun to think that I was never going to be able to take it. I had also heard about lots of side effects and given that I have reacted to so many antibiotics in the past I was very worried that I would react to Trikafta and or have bad side effects. I was also very worried that it simply wouldn’t work for me. This was really difficult for me as I felt like Trikafta was my last option and hope as far as treatments go.

What results have you noticed so far?

I think that I have had pretty good results with Trikafta. This may be partly due to the fact that I was pretty unwell when I started taking it. Within a few hours my cough changed and I could feel things shifting in my lungs. By the 2nd day, I was able to take a deep breath for the first time ever that I can remember. I was asked to do lung function on day 5 and when I did it, I thought that my home spiro was broken. It showed a 30% increase in my FEV1. My lung function has never been that high ever. These results were confirmed to be accurate which absolutely blew me away.

Since then I have noticed that I can now eat without feeling gross and I can laugh without coughing. In fact, I hardly cough at all now (I used to cough CONSTANTLY) and so I have less headaches, I sleep better and I have more energy. I have also gained back some weight that I had lost when I was sick. In the past week, I have noticed I have significantly more energy. I don’t need to nap in the afternoons anymore (don’t tell mum) and can do so much more in my day. I have also noticed that I don’t crave salt as much as I used to and I don’t get all salty after I exercise anymore.

Have there been any difficult side affects you weren’t prepared for?

At first I felt very unwell with a lot of nausea as my body adjusted to being on Trikafta. I also had a bit of a rash on my feet and legs for the first few days. I was given an antihistamine which helped to settle this and then the rash disappeared on its own a few days later. I did also experience a fair bit of lung pain and a burning sensation in my lungs as parts opened up again for the first time in a long time. I have also never felt so hungry in my life!!

Can you tell us a bit about your daily routine with taking Trikafta? How have you found adjusting to your new routine?

Trikafta has made my daily routine so much easier. I take the morning dose with my breakfast and the evening dose with my ‘second dinner’. I still do my physio etc every day, but it feels like less of a burden because I’m not taking antibiotics (which make me feel awful) and as I’m feeling so much better, it is less exhausting and feels like less of an effort.

Has anything else changed in regards to your CF treatment?

While I still take all my regular CF meds (Creon, salt, vitamins etc) and still do my physio, I have not needed antibiotics and have been feeling really great. While these regular treatments may not change, they feel like less of a burden because I’m feeling so much better and it doesn’t take so much energy to do them.

What are your dreams for the future?

To rule the world. Just kidding. One day I’d like to be running my own successful business. I am keen to finish school and my diploma and to be able to study marketing psychology at university next year. I am keen to travel and do all the things I wasn’t sure I would be able to do, but now can.

Just being able to dream and plan for the future is blessing and knowing that I can do these things without worrying so much about being unwell or becoming unwell is a wonderful experience in itself.

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