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    • #17262
      Paul met Debbie
      Participant

      “The One about Kaftrio”

      Since yesterday I am on Kaftrio. My visit to the cf center last week went very well and all the tests were clear to go for the new pills. So this Monday morning, the 2nd of August, I start our day with a little breakfast, some extra butter and cheese on the knäckebröd to go with the first dose and there I swallow them. I take a bottle of nutridrink to add a little goodness and more fat to the mixture. I start my nebulizing right away as usual when the coffee is finished, and to my surprise one and a half hours later it seems like what comes out is already thinner and flowing easier. Debbie lights a small candle to memorize this moment and as I finish the session, it turns out to be a little more productive than normal. I can not call this a purge, at most it was a purgito or purgette. But still, something definitely has changed.

      The morning walk with Buddha goes a little easier than I have become used to. Small things. The horizon doesn’t seem that far away. Walking is more relaxed, it feels like something that could go on for a long time in stead of a fixed minimum distance I must somehow try cover. The steps come more lightly, and for the first in a long time my breath can keep up with my legs. I don’t know if more air passes through my lungs, but it surely feels like it passes more naturally, less obstructed. I don’t feel the need to sit down at the bench I normally crave for after a mile of walking, but go right past it. The steps to our first floor apartment are not as daunting as yesterday, I can walk up in one go without stopping halfway. Still out of breath at the top when opening the door to our apartment, but I recover faster and don’t need to sit down immediately. Now, sitting at the laptop, every now and then a small cough easily does its job, almost without effort. So, all-in all, a good start!

      The rest of the day I have on occasional easy cough, and only a few that take a little more effort. I make a second long walk with the dog, get rained on, energy is good. I take the evening pill (kalydeco = ivacaftor), that was scheduled for 8 pm, at 7 pm right after dinner, because I suddenly realize that it will go very  well with the olive oil and pesto that is already in the pasta I prepared. And it doesn’t matter so much, an hour earlier or later, this medication is not about that. I have cumulated the entire production from my lungs in one cup today, and on flushing it away it turns out to be more than I thought. I estimate it is about 3 times my normal production. On going to sleep, I notice the beginning of a slight headache, a sour throat and some extra clearing from my nose. I decide to leave it alone and go to sleep. After a good nights rest, next morning the throat feels okay. Debbie reports hearing me breathe more deeply and having less coughing during the night. My sleeping app reports nothing special – but then, it hardly ever does.

      Tuesday

      On awaking, my lungs feel more congested than when going asleep (of course), but a bit more free than usually in the morning. I am very curious about what will come out. I take my new pills the way I did yesterday and start nebulizing. There is quite some production, but it all comes easily. It feels as if I just started a new course of antibiotics two days ago and now all bacteria that have almost died are desperately scrambling to the emergency exit. Definitely there is more water involved, less viscosity and less stickiness. Afterwards, my lungs feel considerably more clean and there is more air. I know that I am quite proficient in ACT, but this is something I could not have done all by myself if I had nebulized all day long.

      I am still on Amoxiclav, which has me covered now since spring 2020, and will continue this until I feel safe to try an interruption. I hope this will be one of the results of starting Kaftrio, but there is no hurry. At the moment, it feels like the antibiotic and the modulator are supporting each other very well.

      In the afternoon we take Buddha to our favorite walk at the waterside. Again I feel much more ease in walking, I have even some air to spare for talking. I can’t remember exactly when I walked with this ease before, but I guess it must be 5 years ago, if not longer.

      I decide to post this report today as it is, and cover the rest of my first week on Kaftrio later.

      Oh yes, almost forgot to tell. There is definitely more hunger! Twice today my stomach felt like not having been served at all, while in fact my last meal was still recent. So I filled it up again with some nutridrink. And this after just having read Bailey’s latest column – will I turn into a dad bod 😉?

    • #17263
      Jenny Livingston
      Keymaster

      Paul, I let out an audible “Woohoo” while reading this. You mentioned the small things which made me smile because I’ve consistently said throughout my Trikafta experience that the little things are big things. It is my sincere wish that things only get better for you from here. Thanks so much for sharing this.

      • #17272
        Paul met Debbie
        Participant

        Thank you Jenny, that’s very sweet of you. And you are absolutely right of course: these are miracles by any standard.

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