That’s is PCD for you. After five months of trying to fight this pseudomonas pneumonia at home, we’ve decided to get more aggressive and do an admit. The FEV1 slide is getting concerning to my team and my muciod pseudomonas isn’t responding to any of the IV drugs we’ve tried at home these past five months. I’m tried, I’m exhausted, my breathing is off, and I’m still sick. I’m also frustrated, for many reasons.
I lost my father earlier this month and things have gotten crazy. It’s been like hoarding cats every single day. I need a break, I need to heal, but mostly I need to feel better. I’m frustrated at spinning my wheels so to speak and get absolutely no where with feeling better. Our plan is to pull in infectious disease and see if we are missing something. My current team believes it might be a reoccurrence of my NTM and we just haven’t managed to catch it on cultures yet. That’s what my last go around with failure was, it was NTM abcessus stirring up stuff constantly. We’ve got some options to turn things around, but which will actually work remains to be seen.
In times like this I ask you to give your PCD loved one a break. They shouldn’t have to wrangle their tribe, ward off misinformation and gossip, and be all stressed out keeping everyone onboard. Times like these are seriously where you should be looking to be the less stressful person in your PCD loved one’s life.
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