Kaftrio: An Entire Month Feeling Almost Super Human

Today marks four full weeks since starting Kafrtio.

The new wonder drug that has taken the global Cystic Fibrosis (CF) community by storm. Many CF patients have reported reduction in cough, no mucus and increased lung function. So, after the purge settled down on week 1 I was no longer drowning in green, watery stuff — what happened next?

Catch up on my first week starting Kaftrio, the infamous purge and my top tips for surviving week one here.

Week 2

I started to really feel the benefits of having minimal inflammation in my swollen airways. I couldn’t remember the last time I could breathe without it feeling like somebody was clawing at my red, raw little lungs until now. Breathing didn’t hurt anymore.

An unexpected change: I was air gulping — a bit like a guppy fish. When I was speaking I sounded breathless and it felt like I was running out of air even though I wasn’t.

After speaking with my physio, she explained with any chronic lung disease the body and brain adapts to make breathing more manageable. So, we tend to breath shallow. My brain was still firing signals to tell me to “get more air quickly”.

I needed to re-train my body and my mind to adjust to my new sense of breathing freedom. I did this by practicing diaphragmatic breathing exercises daily. Something many yogi’s are not a stranger to but if this is new to you — check out the video below.

Week 3

Weigh in day. I ‘d gained half a stone in just over two weeks. Wowzers. I definitely felt different in my body, not half a stone bigger but more womanly. I felt curvy rather than “cf skinny” and I had new boobs that looked like they had been injected with a cow growth hormone to prove it!

At this point, my gut was working optionally so I reduced my Creon back by 1–2 caplets as I wanted to trial how my pancreas was coping. It coped fine.

Week 4

The diaphragmic breathing exercises paid off. Breathing now feels effortless. I never thought I would be writing that sentence but here I am. Effortless breathing. It’s true.

The daily chest physio is becoming tedious due to nothing coming up anymore. For a girl who could produce enough to scare a junior physio, I am as dry as a whistle. Nada. I continue with all the regular CF nebs: Ventolin, Hypertonic saline, Pulmozyme and my favourite of the bunch, Cayston.

OVERALL SIDE EFFECTS: Brain fog, fatigue and forgetfulness.

Lung Function Test at Clinic

I had annual review yesterday and it was the first opportunity to do a lung function test. I blew with all my might, expecting to see some spectacular number pop up on the screen but it didn’t.

FEV1 was 1.4 which is up from 1.35 but still gave me a value of 46%. That is identical to my “best number” pre-Kaftrio.

I just want to note at this point, I’d changed my CF centre so this was a completely new hospital with different spirometry machines which can inevitably have an impact on my numbers reading differently.

Yet, to say I was disappointed would be an understatement. I have been seeing many people starting Kaftrio, having their purge and gaining loads back in week 1. Part of me naturally was expecting a similar result.

But…

There is always a big but. I do feel fantastic. The best I have felt in years. I am not cured, of course I am not. I may not be seeing big jumps in those all important numbers but I am feeling the healthiest I have in a very long time. My horrible daily symptoms have subsided and I genuinely do not cough anymore.

Yesterday I needed to do a… wait for it… cough swab for the first time in my whole adult life because I wasn’t able to get a sputum sample. That alone makes up for the less than spectacular numbers.

Overall month 1 has been an incredible transformation from skinny, sick girl to almost super human. I am finally, at 32, becoming the person I was always meant to be — healthy and free.