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

Clinic day/follow up from hospital

Today was CF clinic day.  It was my normal 3 month check up that turned into a hospital/IV follow up.  It seems to happen that way most of the time.  I have dropped the prednisone weight I gained which I’m happy about because 5 pounds in one week was a bit much…haha.  No worries, I am not losing weight per se, I just had gained weight from being on high doses of prednisone.  I am just fine in the weight department. Continue reading

3 weeks of IVs complete

I finished 3 weeks of IVs earlier this week.  I do feel better than I did BUT I’m still having coughing attacks.  I’m attributing it more to asthma though.  I was offered prednisone at clinic on Friday (yesterday) but I declined for the time being.  I’m going to hold off and see if treatments and such can help.  We all know how much I love prednisone, NOT!  My lung functions were the same at FEV1 .96L/34%.  My first two attempts were 33% and my last one was the 34%.  I will follow-up in 6 weeks. Continue reading

Life update

I had a CF clinic check up yesterday and all is good.  My lung functions are up 3% to 36% from 33%.  They said I sounded good and looked good.  My BMI is great at 24, yes I have some extra weight to help fight off infection.  When I’m sick I can lose weight fast because your body takes the calories you take in to fight off infection.  Not that I feel comfortable with the extra weight but everyone says, “you look so good,” so I’ll take it I guess.  If the extra weight helps me stay “healthy” (whatever that is) I try to deal with it the best I can. Continue reading

Hiking Shannonigans

I have what I like to call my “bucket list.” It’s a list of things that I want to accomplish before my lungs get worse and don’t allow me to do them anymore. I don’t have a written out list so much but it’s in my head. I guess I should get it out of there. One of the top things I have wanted to do since moving to East Tennessee is hiking. Let’s just say that I don’t mean the repelling off the side of a mountain kind of hiking. That would just be stupid. Haha  Continue reading