This weekend, I got to go home. Home, sweet home. It was amazing to be home for the weekend! To see my brother play basketball with my immediate family and grandparents, to have family movie night, to talk with my sister, to hug all of my family members around their necks. It was refreshing. Of course, I didn't really have a choice about coming home. I had to get my port flushed for it's monthly access. Which, by the way, was a pain. My port has continually been an issue. It has gotten fibrin sheaths, blood clots, and had to be resituated because it was moving around on top of a rib. This time, when my nurse went to access my port, it refused to draw back blood. My nurse tried three different times to get blood out of my port, but it just wouldn't work. Thankfully, it flushed fine. However, it's a little disheartening that it wouldn't work completely. The port is supposed to work for 10 years, yet it has been nothing but trouble since the beginning. I'm hoping, praying, that it works next month. I got the port to make life easier! Grrrr...sometimes things just don't turn out as great as they seem. (although not going to lie, home sweet home was as great as it seemed. :) )
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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