IV antibiotic time

I have been sick since my birthday, so 2 weeks now.  I tried oral antibiotics which didn’t help.  I threw in the towel and called my nurse to get IVs started.  I had a “sick visit” today since they wanted to see me and get lung functions done.  My FEV1 was down a bit to .91L/33% (last time was 36%).  I’m having more shortness of breath, fatigue and cough.  It’s been a long 2 weeks of being sick and not feeling good.  After seeing the doctor I went to the infusion lab and got my port accessed and had labs drawn.  Now I’m just waiting for meds to be delivered so I can get started.  I’ll be on IV Zosyn every 6 hours for 2 weeks.  Hopefully 2 weeks is all I need.  I think that’s all.

Until next time…

I’m 40!!!

I turned 40 on Saturday the 1st!!!  Go me for hitting a milestone in life with CF.  When I was born the life expectancy was 12.  It is now 37.5, I believe.  So to say it’s a milestone that I made it to 40 is maybe an understatement.  I am just so excited to be a 40 year old who happens to have CF and is still kicking butt and taking names! Continue reading

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