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Let’s talk about mucus (a mini Trikafta update)
Let’s talk about mucus! In what other community can you begin a discussion with those words? Hah!
I’ve posted a few updates since I started Trikafta in November, but rather than repeating all those things here, let me just say — I’ve seen some incredible improvements! The other day, I was talking with a clinical research coordinator about the potential to participate in a study that requires sputum samples. Here’s the thing: I haven’t been able to produce sputum since March. Not even a little bit here and there. Just… NONE. It’s the most bizarre thing!
Have you noticed changes in your sputum since Trikafta? Are you producing less or has the consistency changed? Have your cultures come back with different or less bacteria growth?
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6 Replies
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This is nothing short of mind blowing for me. I’m thrilled it is having such a positive impact for you Jenny, and for others taking it. I’m sure I’m no different than others who can’t help but think of friends and/or family with CF (my sister died at 14) who had very little to no treatment options at the time, and how far things have come.. I remember being told that a cure was 5 years away almost 20 years ago. It was 5 years away every few years. I know Trikafta isn’t a cure, but it’s something substantial. It took long enough to get here, but it does make me happy that it actually works and makes a real difference. I hope you keep posting updates..
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@gl210 Wow! Your comment is mindblowing to me because of the similarities between our experiences. My sister also passed away at the age of 14. I was also told, time and time again, that a cure was “just 5 years away. Just hold on for 5 more years.” You’re totally right, Trikafta isn’t a cure, but it’s changed the entire game for me. I’ll definitely post more updates as my journey progresses. Thank you for your kind words!
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@gl210 Wow! Your comment is mindblowing to me because of the similarities between our experiences. My sister also passed away at the age of 14. I was also told, time and time again, that a cure was “just 5 years away. Just hold on for 5 more years.” You’re totally right, Trikafta isn’t a cure, but it’s changed the entire game for me. I’ll definitely post more updates as my journey progresses. Thank you for your kind words!
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Sorry to hear about your sister, and sorry we have all that in common. They were telling everyone back then a cure was close. Maybe it was a good thing. Hope was in short supply back then.. Not anymore though!
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Trikafta may not be a cure but it is a giant leap ahead. What I like about it is that it not only has benefit in the lungs but as every cell in the body is exposed to it it may be expected to ‘normalise’ the electrolytes within the cells by improving the Chloride transport, thereby lowering intracellular Chloride and thereby lowering intracellular Potassium and Calcium. Be interesting to see if CF’ers on Trikafta still get hypokalaemia. And is Osteoperosis slower to develop?
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Tim, you’re absolutely right – it’ll be so interesting to see what Trikafta does for us long-term (especially for children who are able to start taking it early in life).
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