I recently started a new cystic fibrosis (CF)* wonder drug called Kaftrio. Here’s what happened…
At 49 with a lot of lung damage from battling CF and diabetes, I would cough throughout the day and night, struggle to breathe deeply and to exercise beyond 100 metre sprints.
My daily two hours of medication was all consuming but only gave me health that most people would despise. Hour plus long coughing fits during the night (trying not to wake up my family) were commonplace.
I felt I was battling to stay afloat in a big ocean. Close to drowning with CF, all out at sea, looking for someone or something to save me and take me to dry place and a brighter future. Every day, I was just keeping afloat with hope as my biggest motivation to not go under the surface and drown.
In early September, I began taking Kaftrio – two tablets in the morning and one at night – here is the rollercoaster diary of what happened next…
Saturday 5 Sept – Day 1
I dreamt of taking the new yellow pills all night. I knew this was an incredibly important milestone in my life and my survival.
I took the morning Kaftrio pills with full fat milk (fat is needed for absorption)
I felt things in my lungs change after only 20 minutes! Nothing has been this fast paced in my life. The ‘purge’ of my lungs was beginning and it was instant.
I was coughing up mucus all day long.
It was like being on IV drugs but without a PICC line in my arm and hours of treatment.
It was utterly draining and I had to lie down for some of the afternoon.
It was a tsunami of phlegm coming up! This definitely felt out of the ordinary and so different to any other medication I’ve had.
My other CF meds felt like pea shooters compared to this cannon!
The evening dose (blue pill) is taken with my meal and also needs fat for absorption.
Night-time was challenging as the coughing continued throughout the night.
Sunday 6 Sept – Day 2
Very similar day again. Had to hold my nerve that this was helping me as it felt counter-intuitive to be coughing so much all day long.
Instinctively I knew I had to rest and go for a tame walk instead of attempting my usual weekend run.
Headache and itchy skin so took paracetamol and an antihistamine.
By the end of day 2, I felt I was coughing less (less barbaric)
Monday 7 Sept – Day 3
Felt my lungs ‘bubbling up’ in the middle of the night and so ensued my ritual of going downstairs to cough so as not to wake my wife who is a snr nurse and needs her sleep.
Worked from home and it was a busy day interrupted by my need to clear my lungs.
Managed 2 local walks in the park inc. walking up 2 inclines.
Tuesday 8 Sept – Day 4
Broken night’s sleep again.
Big coughing fit in the middle of the night but interestingly not much mucus came up this time.
In the morning, I felt I had a bit more breath to do my weights.
Getting coughing spasms out of the blue – one made me abruptly finish a work call!
Less mucus coming up overall.
Wednesday 9 Sept – Day 5
Worst night’s sleep for a while with a barbaric coughing attack keeping me up for a long time.
Feel very jaded but felt desperate to see if I could run any easier, so at lunchtime, I went for my first run since starting Kaftrio, with shuttle sprints in the local park. Good news – I could run slightly further on each sprint and didn’t cough as much afterwards or feel completely out of breath!
Thursday 10 Sept – Day 6
Still the similar coughing attack at night to endure.
Did my weights in my bedroom which felt slightly easier… perhaps I’m gaining some extra strength!
Another avalanche of coughing throughout the day… but the mucus in my sputum is becoming less and less.
Friday 11 Sept – Day 7
Horrendous night’s sleep – one coughing fit woke me from a deep sleep and I struggled to get back off to sleep.
Busy work day on poor sleep – just about got through it. Kaftrio is tiring for sure.
Saturday 12 Sept – Day 8
Took a sleeping pill overnight to force a fuller night’s sleep, which helped.
Did my morning weights session and then some mid-morning shuttle runs in the park. Felt I could run a bit further than before and coughed less after each sprint.
Feel like I have a bit more energy.
My diabetes is improving as well – my blood sugar scores are lower.
Sunday 13 Sept – Day 9
Slept better. Didn’t have a coughing attack during the night.
While out walking in the afternoon, I was able to run up 3 inclines in the park!
Monday 14 Sept – Day 10
Slept through the night for the first time without coughing!
Hardly coughing up any mucus now. 2 x walks on a warm day and finding inclines to run up.
My evening physiotherapy is hardly producing any mucus now which is a revelation! Before Kaftrio there was no end to the amount of mucus which I had to cough up.
Tuesday 15 Sept – Day 11
Side-effects of itchiness is on and off. Monitoring for other side effects like low blood sugar levels and upset stomach…
Still doing all my other CF and Diabetic meds so nothing changing with that.
Seem to have a bit more energy despite the disrupted sleep.
Not sure if my poor sleep is due to Kaftrio or perpetually working from home and not being as tired as would be on a usual London commute day.
Wednesday 16 Sept – Day 12
Not much mucus to come up during my morning physiotherapy session. This is a complete contrast to my mornings pre-Kaftrio when I would cough for the first 90 mins like a 40 a day smoker! Oh the irony that I’ve never smoked one cigarette!
The midday run was hard but I included running up some inclines in the park as well as the flats!
Thursday 17 Sept – Day 13
Very little cough when I woke in the middle of the night.
I could do 5 more press ups in one go (from 30 to 35) during my morning exercise.
Kaftrio is giving me the ability to challenge my underlying fitness and organically improve it.
It is allowing me to do the exercise to get fitter rather than making me fitter just because I’m taking it. It seems to remove the CF symptoms and complications out of the way.
Incremental improvements in my lung function and fitness seem to be the order of the day.
Friday 18 Sept – Day 14
Feel very jaded because of broken sleep but not from extra coughing.
Kaftrio is a powerful drug which must be taking its toll on my body as I adjust to it.
I can definitely do deeper breaths now which feels almost normal (something that the majority of people take for granted feels like my Everest!)
I hardly cough during the day now.
Saturday 19 Sept – Day 15
Went to the gym for the 1st time since Covid lockdown to do my weights programme while wearing a mask. Kaftrio feels like it has given me some armour plating, and with that, more confidence.
After the weights session, I ran outside on the cricket outfield. Hardly any mucus to cough up.
Sunday 20 Sept – Day 16
Broken sleep again.
Body aches from 1st proper weights session in 7 months.
Feel motivated to get back to the gym soon.
Tuesday 22 Sept – Day 18
After a busy day at work, I had the energy to go for an even longer walk and run up more inclines.
I don’t dread running anymore. I’m curious and excited by what I can achieve.
Future vision – it’s possible with Kaftrio that I can run every other day rather than twice a week (which was my usual pattern for the last decade or more)
Wednesday 23 Sept – Day 19
Hardly cough at all in the mornings – I will never tire of this feeling
Thursday 24 Sept – Day 20
More give in my lungs when doing my morning press ups and plank exercise.
No mucus produced during evening physiotherapy session – what a pleasure that is to see.
Friday 25 Sept – Day 21
Slept through the night.
No real coughing even when it was raining outside (normally wet conditions make me cough even more).
Had the flu jab.
My son Felix has had a cold all week following a return to school. I am desperate to avoid catching it.
Saturday 26 Sept – Day 22
Woken up by a sore throat.
Big gym weights session followed by the most amount of oudoor sprints I’ve done in a long time.
Out with friends in the evening for outside pub dining.
Sunday 27 Sept – Day 23
Disaster! A little cold is kicking in following the flu jab and being exposed to Felix’s cold. Not helped by me being ‘Rambo’ with my exercise yesterday but I couldn’t help trying to push my fitness.
Monday – Tuesday 28-29 Sept – Days 24 & 25
Feel very tired. Lungs are already productive again. My nose is streaming.
Kaftrio cannot protect me from getting colds and my CF is still there to flare up when I do get a cold. I feel dejected that this has happened after such a promising start on the new drug.
Wednesday 30 Sept to Sunday 4 Oct
Effects of the cold continue and nose is running more than I can bear.
Only managing one sprint session this last week.
I’m hopeful that Kaftrio will hasten my recovery from this cold and boost my lung function.
Monday 5 Oct
High temperature so went to bed as I was shivering.
No other Covid symptoms so pretty sure this is not the virus.
Katie books me in for a local Covid test in the near-by walk-in centre
Tuesday 6 Oct
Temperature is back to normal but I feel drained from a poor night’s sleep.
Took the test. Katie and Felix to quarantine until we know the result. The cats seem to like being in quarantine!
Wednesday 7 Oct
Later that evening, I receive a text confirming a negative test. All back to normal in the house.
Thursday 8 Oct
Slowly and bit by bit, I see improvements in my health and lungs as Kaftrio aids my recovery.
Oct – Nov (present day)
Am back to feeling how I felt with my lung function, energy and capacity to exercise before the cold, despite navigating some other side effects caused by Kaftrio. This is not a cure but I’ll take it for sure.
It’s been a surreal year with pandemic and isolation but something has changed for the good with my life and health.
I’m not drowning in the ocean anymore. I feel like I’m wading through shallower waters approaching dryland and my survival struggle has been massively eased.
I’m hopeful of a brighter and heathier future with my wife and son. Onwards and upwards. Something changed!
I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.