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    • #17295
      Paul met Debbie
      Participant

      “The One about Kaftrio (part 2)”

      Wednesday, day 3 on Kaftrio. I wake up feeling much less congested in the lungs. Definitely, there is some cleaning up to do still, but there is more free air as well. And indeed, this feeling proves to be correct when doing my nebulizing. There is a lot less productivity than the last two days. By the way, I had a good nights sleep as well, without any coughing worth mentioning.

      The weather has also cleared up considerably, after two days with less sun and a lot of clouds, we are now enjoying a sunny blue sky with some extremely white clouds, and a very benevolent temperature.  Walking is as comfortable as yesterday, more air comes into my lungs easily, still I walk slowly but don’t get out of breath anymore, no sitting at every bench.

      After lunch I get a bit sleepy and tired, and lie down on the couch for a little nap. A lot has happened in the body since Monday, invisibly it has changed a lot of processes and no doubt this also takes energy, not to speak about the anticipation of starting with this new medicine. An hour of sound sleep awaits me.

      To my surprise, after that there is a lot of energy again. I decide for another stroll with the dog, and before I know I am on one of our longer trips along the brook, which we complete in about an hour. Non stop. This year I didn’t venture this so far. I also notice more profound smelling, the flowers, the water of the brook, the moist of the forest.  On return, Debbie prepares a delicious and nutritious meal which is just the right thing at the right time. After dinner and coffee, we both collapse on the couch and enjoy a real sleep for almost an hour. Apparently, this is what listening to the body amounts to. After Kalydeco, a cup of tea and nebulizing (not very productive) we are both glad to feel the soft sheets. Some coughing still happens shortly after lying down. Another night together, so enjoyable.

      Thursday, day 4 on Kaftrio. There is some extra energy which keeps me from sleeping deeply the first few hours of the night. I focus on my breathing and manage to quieten down and fall asleep well a little later. Breathing is more enjoyable as well, no sounds or vibrations in the airways. In the morning, nebulizing goes very well. There is clearly a lot less production then what I was used to in the past few months (or years…), and what comes, presents itself almost without effort. Afterwards, the airways feel very clear indeed. I make a note of this on the laptop and go for my first walk with Buddha. Rest of the day I feel fine. Still have the need to go for a little siesta after lunch. In the evening, nebulizing is not very productive, and almost takes no energy. I finish my normal program with the usual amount of NaCl, but I could have done with less. I fall asleep fast, to awaken 3 hours later in the middle of the night as if I had slept for the entire night already, very sound and deep. I manage to fall asleep again and have a good nights rest, but want to rise an hour early.

      Friday, day 5. Rising an hour early feels okay. I can breathe freely, it feels like almost no congestion in the airways. And indeed, it turns out with nebulizing: amazingly little production. Blowing my nose would have amounted to more. It is almost hard to sit out the entire session, but I do. And the mucus has cleared up considerably as well, showing almost no coloration, indicating that not only the inflammation, but the infection as well is leaving my body. 9 years ago I experienced a phase that lasted three years in which I needed many antibiotic IV’s. Right after such an IV (with Meropenem) that lasted 3 weeks of continuous antibiotic flow, my lungs were as clean as they are now (but only for a week, and after 4 weeks troubles had returned fully). So 4 days of Kaftrio equals 3 weeks of Meropenem IV. This is remarkable. And before the IV-phase, if I had to find a point in time that feels equally clean as today, I have to go back maybe as far as when I first started to nebulize; I am talking about when I was 25 years old. So in this respect, Kaftrio has rocketed me back in time more than 30 years.

      Of course then, I had about 60% FEV1, while recently I scored a modest 25%. I plan to have my first home PFT next month. But regardless of the figure that comes out, the practical changes are very profound in effect already. In fact, I don’t even expect my FEV1 to rise, because what is not there anymore, cannot improve. Only perhaps the cleaning up of the residual lung capacity will also diminish the obstruction a bit and open some more airways, so there might be a little rise in lung function. But again, I have always felt that these measurements can hardly (and didn’t ever) actually correlate to the multitude of physical changes that occur in the body as a whole with CF. So they will not be able to accurately reflect the recent improvements after Kaftrio either. These go way beyond lung function as it is crudely measured currently. Still, I can’t help being curious.

    • #17298
      Jenny Livingston
      Keymaster

      This is such great news again. I remember the burst of energy I had for months after starting Trikafta, as well as a hugely increased appetite. I’d eat more during the day, then awake in the early morning hours (2-3 am) feeling ravenously hungry as if it had been days since my last meal.

      I agree with your thoughts on lung function. It’s a number that is indeed a piece of the puzzle, but doesn’t accurately reflect the many other important pieces. I like to know what my lung function is, but I don’t get attached to a number.

      I hope for continued improvement and blessings for you, friend.

      • #17302
        Paul met Debbie
        Participant

        Thanks again Jenny for your kind wishes! I will report shortly about the remaining part of my first week.

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