CF Clinic Check up

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

2 Week Trikafta Update

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

New Triple Drug for CF is Approved!

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