I thank God for the invention of a port. Even though my port has not always cooperated with me, I am still so glad I have it! My port has allowed me to start my IV antibiotics from home instead of going in the hospital to have a PICC line placed. I don't have to deal with the disgusting feeling of the PICC line slithering through my vein and out my arm at the end of the two to three weeks of therapy. It's a lot easier to keep my port dry than to keep my PICC line arm dry. I can use both arms in the shower (you don't know how much easier it is to shower with 2 arms!) My chest isn't nearly as sensitive to the tape as my arm is. And, most importantly, I have easy access to blood through my port whenever I need levels drawn instead of nurses having to stick me multiple times, trying to find a vein. My veins have been so used and abused over the years, they are now minuscule in size and roll away from pressure points. Needless to say, it's pretty much impossible to hit one of my veins. With my port, once it's accessed, you can draw however much blood out of it that you need--assuming I don't have a blood clot or fibrin sheath. As a Cystic Fibrosis patient, I have yearly labs drawn to check my vitamin levels, kidney function, white blood count and red blood count, and Hemoglobin A1C. I had these levels drawn today, and I was reminded again of how grateful I am for a port that makes my blood easier and less painful to obtain!
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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