I have been on Trikafta for one year as of today. The major things I have noticed is that I am coughing less, less coughing attacks and weight gain. I have not gained any lung function like others have reported. I have been stable though as far as lung functions are concerned. I have been lingering around 35% FEV1 (give or take a few percentage points). I still however get very short of breath with exertion like walking in a store or. any long distances, moving things around the house, making a bed, carrying things, etc. I wish I could breath better because that is the most frustrating thing right now, but that’s life with CF (getting closer to end stage CF).
As far as transplant is concerned, I’m still too healthy to be transplanted. I am ok with that because I’m not mentally ready for it at this time anyway. According to one of my transplant doctors most CFers get listed around 20-25% lung function or less. So I still have a little ways to go. Mind you one bad exacerbation (illness) and I could drop lung function pretty quick. That’s about it as far as an update on Trikafta. I have a virtual CF clinic appointment on December 17th, just a check in/check up.
Until next time…
Today I had CF clinic. Thanks to Trikafta my weight is up, not that I want it to be. haha My lung functions are holding steady at 37%/1.06 L FEV1. In October they were 36%/1.02 L FEV1. It is unclear if I will gain any lung function on Trikafta, only time will tell. I’m just happy if I hold steady and put off lung transplant as long as possible which gives us more time to fundraise. The hope is that Trikafta will extend the time between exacerbations (lung infection) needing IV antibiotics. Continue reading
I’ve had a few people ask how I’m doing on the new medicine so I thought I would update. Today is day 14 on Trikafta, the new CF medicine. On day one I noticed a difference in my cough within about 4-5 hours from when I took my first dose. My cough was more “juicy” and productive. It was the medicine working to try and clear out the old mucus in my lungs. I was coughing more and coughing up more than usual as well. By day 3 my cough had changed back to my usual dry cough and was not very productive (my usual). I’m coughing less but still having coughing fits as per my usual but they are less intense and I recover faster. I also recover from being out of breath faster as well. My sputum (mucus) is lighter in color and thinner (not as thick and sticky). I’m not coughing as much at night, or at least I’m not waking up to my coughing as much. I have not had any bad side effects thus far. Yay! Continue reading
The wait is finally over. Trikafta was delivered today! I will start it tomorrow morning. Now here is to hoping that I tolerate it well. I will update after I’ve been on it for a little bit so that I have something to update about. haha
I contacted my transplant coordinator and had her ask my doctor about me trying Trikafta (the new CF drug) in regards to my liver nodules. Doctor said it is fine to take it we just have to monitor my liver enzymes closely. Continue reading
The new triple drug for CF has been approved! You can read the FDA article here. It is supposed to help about 90% of the CF population. It is for my CF mutations (double delta f508). The name of it is Trikafta (elexacaftor/ivacaftor/tezacaftor). I can’t help but to think trifecta when I see the name…haha. Continue reading