Tagged: Aliveness; Kaftrio; Trikafta
August 13, 2021 at 7:00 am #17320Paul met DebbieParticipant
“The One about Kaftrio (conclusion)
Saturday, already day 6
I had a good nights sleep, a solid 8 hours, despite napping on the couch yesterday evening after diner for almost an hour as well. I forgot to do my siesta yesterday, but the body reminded me of that omission at 7 pm. My stomach is a bit impatient, it doesn’t like being empty for too long and produces a nagging feeling of hunger, even in the night. So I am glad to continue my long standing habit to take a bottle of Nutridrink during the night as well. And even so, upon rising in the morning, there is my stomach calling again – this is new. I used to wake up my stomach with the coffee, but now it is way ahead of me and not even satisfied with our little pre-breakfast.
Ah yes, eating! There is definitely more hunger! I get more calories, first of all because I take an extra bottle of Nutridrink (300 Kcal) with my new pills (so twice a day, 600 Kcal extra). And of course they require some extra Creon as well. I notice however that, and this is different, this extra Nutridrink does not diminish my craving for other meals. The last few days my stomach repeatedly acted like it had not been served for a long time, while in fact the last meal was only recent. Thursday evening I prepared a copious dish with Italian Gnocchi and red pesto (with garlic, sweet onion, lots of vegetable, and a serious amount of olive oil). This I didn’t crave for in years. And I ate like an April-bear after winter sleep, Debbie boldly joining me as well as she could. Of course, with a BMI of only 18 there is enough room for growing. It seems my body is now capable of absorbing and burning some more calories. Probably there is more oxygen that wants to be used, and a lot of energy that was formerly occupied by fighting the infection and inflammation, is now freed up to dedicate itself to digestion again. But I can’t remember this happening this clearly in the past, not even after an antibiotic IV, not even from prednisone. These new changes are much more profound and basic, they come from a deeper and more natural layer of my physique. I thought I just mention this effect as well; not only the lungs improve, but the entire system benefits in partly unmeasurable (and perhaps even unknown) ways.
Yesterday evening I checked my weight and around 1 kilo (2 pounds) has already found its way to a more permanent stay. Something that had proved to be impossible for the last few years. My lower abdomen feels a bit more full, but no constipation or pain fortunately. It probably reacts to the extra eating activity.
Nebulizing was a breeze and only slightly productive. With airways like these, I feel confident to stop my continual antibiotic for a while, just to see what will happen. I will discuss this with my team asap. This would no doubt improve my intestinal flora and nutritional state in the longer run. It seems that the airways have already now improved and normalized the operation of their innate immune system – and are much more capable and efficient in dealing with infection than before. In stead of damaging the own tissues with an overdose of neutrophils, they now can effectively ands selectively attack and dispose of bacteria and the like, as intended by nature, and leave the tissue unharmed. This is of course the most powerful antibiotic available – and without side effects. And it allows the inflamed airway tissue to calm down and recover, perhaps even restore.
Sunday, day 7
Since inflammation has almost disappeared from the airways, I might consider to stop the 50 mg of Diclofenac I generally take before going to sleep. To soften the transition, I could take a Tylenol instead. I know that I can easily taper myself from Tylenol by taking halves a couple of nights and then stop, while the diclofenac is only available in the strength I have now. I might as well stop my 2.5 mg of Prednisone, but I am not sure yet about that. It doesn’t only take care of some inflammation, but gives me a noticeable energy boost as well. So it will depend also on the available level of energy I feel with Kaftrio in the longer run. Things to discuss with my team. They are very happy for my recent improvements, that’s for sure.
It takes a bit more time to fall asleep, but I manage. One our earlier than normal, I feel fully rested and decide to start the day at 6:30 am. Nebulizing is so unproductive that I only take one bottle of 10 ml NaCl in stead of the normal two, cutting down my nebulizing time to about one hour. Lungs feel very clear, incredible. It is as if no excess mucus is being produced anymore.
Showering: another activity that is much easier these days. Specifically toweling off was a strain on my breathing, using the same skeleton muscles for that and for the arms. Now this simultaneous use is no problem any more. One of the things that show how covertly many activities have been affected the past couple of years by my decreasing lung functioning. It is very enjoyable being able to do them again without interruptions and getting out of breath.
Finally: Piano playing; unfortunately still exactly as difficult as it was, but that is not because of my lungs, but because of my stubborn fingers 😉. I manage to have longer sessions without collapsing at the keys though. This week I mostly dedicated to playing a new piece that I happened to come across last week. I didn’t know it existed. It is composed by Ignacy Jan Paderewski (1860-1941), a famous larger than life Polish pianist, who did a lot more in his lifetime than piano playing (for instance: he was prime minister of Poland as well and one of the co-signers of the treaty of Versailles, that ended the first world war). Perhaps he is even more well known in America than in the Netherlands, because later in life he settled in California, bought a big ranch and planted some Zinfandel grapes to make a fine wine. I knew he also was a composer, but only because his Minuet in G is such a well known and famous piece of piano music. But he composed many more works. One of those is the Nocturne, op 16 no. 4, which is just about playable for my limited technical skills. I also was so lucky to find a noble performance on YouTube where it was played masterfully by the famous English pianist Stephen Hough. After about one week of practicing I have the piece down technically. Now I can concentrate on bringing out the music more. That will take me several more weeks I guess, but there is no hurry. It is always very enjoyable to learn such a pretty new piece of music. I feel it suits my new situation very well: there is a lot of space and free breath in it, and a lot of joy and equanimity – and gratitude.
And in the recording I mentioned (on YouTube) there is a lot of coughing, but not by me 😊.
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