Today was not a great day for health-related things. I had a post-IV appointment with my CF doctor's PA. I thought it was going to be a normal, quick appointment. However, about 30 minutes before I left for my appointment, I started coughing up blood. I mean, straight blood. This has now happened four times in a little more than three months--definitely not okay. The first bleed was towards the end of September. That bleed was definitely the biggest. I stained our front porch with my blood and filled a few Kleenexes. The second bleed was in November, and pretty soon after, I started IVs, hoping that would take care of the bleeding. Then, I had the 3rd bleed one day into the IVs. I was still hoping the IVs would get rid of any infection if that was the source of the bleeding. With this fourth bleed, however, I don't think infection is the culprit. At the doctor, they decided that I have to have a pulmonary embolization. An interventional radiologist does the procedure. I'll be out, and the IR will put contrast in to see where the bleeding is. Then, he'll go in and cauterize the bleeding areas. It's a relatively simple procedure, except for the fact that I never EVER do anything easily. The fact that I'm even having to have an embolization is rare in and of itself. And this will be my second one. All the numbers on my pulmonary lung function test stayed relatively stable, so that's good that my lung function hasn't dropped any. My weight was down 5 pounds, which is unfortunate. My stomach shrunk during my course of IVs combined with the stress of the last few weeks of school. All and all, it was a bit of a rough appointment. But that's CF life. You have good days, and you have not so good days. Even though I had hoped this break would be relatively free of health-crises, I am at peace knowing I can trust God through it all.
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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