Wow, what a week. Last Tuesday, I went to the doctor. My lungs weren't doing well, and I was having a pretty severe pain in my right middle lobe area. The appointment went in a completely unexpected direction. My doctor wanted to do a bronchoscopy Thursday to see if we were missing anything down in my lungs. Although a bronchoscopy is not an invasive surgery, I still had to have anesthesia and miss Thursday and Friday of work. My doctor also wanted me to follow the bronch up with three weeks of IV antibiotics, even though I just finished a course of antibiotics about a month ago. I was strongly opposed to missing work, but I still had the bronch Thursday and started IVs. The bronchoscopy went fine. My doctor took several sputum cultures from different areas of my lungs so if any new bacteria is invading them, we'll be able to see soon. The anesthesia from the surgery wiped me out--I had absolutely no energy Thursday through Sunday. I'm not sure if I've ever slept as much in one weekend as I did last weekend! Then, there's the fact that my lung is still hurting. I'm going in for further testing and scanning on Friday, so hopefully we'll have answers soon. For now, I'm just coughing as much as I can to clear my lungs and trying to ignore the pain. I also hope the three weeks of IV antibiotics fly by quickly! Let's be honest, I'm not a huge fan of how I feel when I'm on IVs. I'll be counting down the days until I can swim, shower, exercise, and sweat freely again without worrying about infecting my port!
Dear friends and family, It's May 2020, which means it is another CF Awareness month and another time to talk about all the amazing things happening in the CF world! This has been a very good year in the CF community. In October of 2019, Trikafta was approved by the FDA for all people with CF with at least one copy of the dF508 mutation. 90% of people with CF have at least one copy of this specific mutation. This is a HUGE deal in the CF community because it is one of a handful of drugs that addresses the underlying cause of CF and the only drug that such a huge percentage of people with CF can take. Trikafta is a total game-changer for so many, including me. I have gained stability, I require fewer IV antibiotics, I gained lung function I thought was long gone, and I feel like I can plan things in my life again. The hard work of the CF Foundation, willing researchers who continue to search for a cure and medicines that will increase quality of life, and the generous donations fr
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