Kaftrio Week 1: From The Purge To Almost Super Human

11th September, 9:30am I washed down my first Kaftrio dose with two bottles of fortisip compact. That’s 18g of drinkable, supposedly flavorsome fat for those who are wondering. This was a breakfast fit for CF champions.

4 Hours Later…

I didn’t expect such an impact on day one but by lunchtime something magical started happening. Those two peach, magnolia, washed out yellow caplets that hardly resembled prizewinning pills started stirring stuff up.

The Infamous Purge

Nothing I read quite prepared me for the Kaftrio purge that was about to erupt (quite literally). Symkevi had nothing on this.

As if a switch flipped, my thick, sticky mucus started to turn to the consistency of water. I wasn’t being suffocated by pseudomonas anymore, I was drowning in it…

Fancy watching rather than reading my Kaftrio experiences on Week 1? Check out my first ever youtube video below or…

Keep scrolling to read my day-by-day diary and, catch my 8 top tips for surviving The Purge.

DAY 1

My lungs started to snap, crackle and pop like a bowl of Coco Pops. The luminous green gunk that looked almost radioactive felt as though it was being liquidized. If you imagine the sensations before a big bleed, those bubbling vibrations that tickle, that is what to expect.

I cleared 3/4 of a party cup without even trying. Imagine that. Usually I’d clear that in a week and I did it in around 14 hours. I was exhausted but this drug was already proving to be something spectacular.

DAY 2

The purge continued at a much lesser rate but I was still extremely breathless — more than normal for me. Walking was difficult. My throat and upper chest were sore and sinuses throbbing.

Overall the first 48 hrs were tiring. There was a lot of coughing. Aggressive coughing. Coughing fits. Tears, from coughing. Headaches, from coughing. Soreness, from coughing. Tension, from coughing.

DAY 3

I woke up… without a cough. Read that again. I woke up… without a cough. No morning spew. Habitually I tried to cough but… it sounded ridiculous. Nothing came out, nothing happened. Heck, it didn’t even sound like my cough. Things rapidly turned a corner, my purge was subsiding.

DAY 4–5

I chugged back a bulletproof coffee to attempt my first run on Kaftrio because I needed to put these mutating lungs to a test.

Kaftrio cape ON, trainers to pavement and I was off. I was running towards my second chance at life and I was running fast. Much faster than usual.

Unlike before, my chest didn’t burn within 30 seconds, no coughing fit after a couple of minutes and my legs became tired before my lungs did. I could breathe and, run with ease for the first time ever.

DAY 6

My purge had a quick turnaround. I felt healthy. My classic cf cough had disappeared, the luminous green gunk was no more. Tiny mucus plugs had come and gone. By day 4, I struggled to clear anything during physio which is unheard of for my juicy little lungs.

I could walk AND talk. I didn’t get breathless. I could run AND breathe. I didn’t hyperventilate.

My stomach was working at it’s best. My sense of smell had increased. I was still pretty fatigued with some brain fog but it wasn’t impacting me enough to bother me. I was feeling almost, just almost, superhuman.

8 Top Tips For Surviving A Kaftrio Purge

Breathe.

Ventolin nebs, lots of them!

Clear.

My sinuses started to swell and drain quicker than expected so I was using my neilmed sinus rinses every few hours — my ENT surgeon assured me anything up to 8 rinses a day is safe.

Pause.

Take a break. If you can, I d recommend starting on a weekend.

Treat.

The purge left me sore and I had persistent headaches for the first few days which I managed with ibuprofen and paracetamol. I did use codeine at night to suppress my cough reflex allowing me to get a decent 40 winks.

Relax.

Rest and Recover. Be assured the the fatigue is just Kaftrio working it’s cellular magic.

Heat.

More than anything during my purge, my chest needed soothing. I used a heated lavender wheat bag, periodically rotated it across my chest, shoulders, sinuses and head. No time to grab a heated wheat bag? Try a good ol’ water bottle wrapped in a towel to melt the tight muscles in your upper body.

Hydrate.

A comforting, warm lemon and honey mock-toddy (see what I did there) or a turmeric latte for a little curcumin anti-inflammatory boost just before bed worked a treat.

Soothe.

I massaged Doterra Deep Blue Rub into my neck, chest and back which helped to open my airways as well as relax my tired, achy muscles. Alternative product is Vicks Vapour Rub.

If you are not a fan of menthol rubs, Neals Yard Warming Salve with stimulating ginger and clearing rosemary essential oils still does a wonderful job without leaving you smelling like a chewing gum.

And that’s it! There you have it, my ultimate lowdown on week 1 with Kaftrio. Good luck to all the Kaftrio-ee’s ready to embark on their own journey. I will see you on the other side, friends.