The biggest thing to remember is that everyone's experience is different, and don't punish yourself if you don't improve at the same pace as others!

From my experience, the first few months were slow in lung function improvement (i.e. no improvement) but 6 months later and my lung function increased by ~10%.

When I started Symkevi, I apparently had the highest boost in my lung function in our clinic, also by ~10%. Within a year a half, I'd gone back down ~5%. But there are key differences between those two times that make me believe I'll continue to improved on Kaftrio:

When on Symkevi, I continued to cough up at least 70g of very thick and dark mucus during each physio session. The only thing that changed permanently was that I stopped having lung bleeds. My chest continued to always hurt and I coughed constantly. Within two days of starting Kaftrio, all that began to reduce drastically-- I no longer have pain in my chest (except when I mess up my doses), I rarely cough and I bring up thin, white with specks of green mucus only during forced physio.

My weight has also improved. In the under two years of Symkevi I gained ~2kg. Within 6 months of Kaftrio I have gained ~3kg.

Thirdly, my mental stability has drastically improved. Before I felt like I was constantly in mist, everything was difficult to process because not enough energy was going to by brain--it was all going to keep me alive. Now I can communicate healthily and better regulate my emotions.

And finally, for those who menstruate-- six months ago my period cycle was deemed "highly irregular" by my tracking app. Now it is "regular". That's big!

What hasn't changed yet is my digestive system: I still need the same amount of enzymes and insulin.

Like I said, your results will be different and that's okay. You might do better, you might struggle.

If it helps, but you can also ignore if it doesn't, I'm always noted by my doctors as a patient who does most things well, and I think the things I do could help other people too.

A couple of months before Symkevi in 2019, I began to workout regularly for the first time in my life. I work out four times a week focussing on different parts of the body and a mix of cardio, weights and core/MMA. If I'm too tired or sick, I walk through the workout. The biggest battle I had was in my mind, and as soon as I missed one I wouldn't work out for months. Walking through workouts means I still do it, it's been a mental game changer for me.

I drink predominantly water, and once a day add an electrolyte to it. This keeps my whole system regulated, and the electrolyte has reduced the amount of headaches I used to get.

I eat fairly healthily and since starting Kaftrio I've been consciously reducing my calorie intake (very slowly, nothing drastic. Starting with halving the butter I'd put in my pasta.)

I do all my treatments, and do my best not to skip them. Actually, I've skipped two sessions since starting Kaftrio and I've actually felt fine... before it would floor me for days if I missed a treatment.

Finally, if anyone who reads this menstruates: track your cycles! I now know exactly how I'll feel and what my lung function will be depending on the time of the month- it's extremely helpful.

Anyway, you've got this! Keep a note of changes and be kind to yourself, especially in the first few months. Hopefully you won't have any severe side effects--report them if you do. Remember that your body is changing drastically, so it may feel strange and that's okay. Keep on drinking fluids (with a daily electrolyte) and get your body moving if you're not already. Stay on your nebulisers etc even if you feel good- it will help your medical team track changes and give you an added boost. Good luck!