For my own record keeping and to potentially help others that may find themselves in the same situation (even if it is just for the comfort in knowing others go through long bouts of struggle with CF too) I really wanted to be better about keeping this last (exhausting) exacerbation well documented. However, living with the complications of CF everyday can be mentally and physically exhausting and despite finding this blog as a way to release some of the frustration and thoughts that surround CF I often find that while I am in the thick of sickness taking up mental space to write about it can feel like too much. And so this is a quick breakdown of this last complicated exacerbation, which I might add, is not over.
June 13th: Despite feeling relatively well most of the summer I blew a disappointing 34% at clinic. Was given 2 weeks of Cipro.
July 5th: Called to ask for stronger meds as Cipro wasn’t enough to make me feel better.
July 13th: Started IV Zosyn in hopes of it doing the trick.
July 18th: After 2 weeks of orals and one week of Zosyn my FEV1 dropped to 28%. Decided on doing 3 weeks of Zosyn total to hopefully kill off more pseudomonas.
July 25th: Feeling better although not great, but my skin started to react to my port dressing. Started Prednisone to contain my severe contact dermatitis due to all adhesives.
July 6th: Went to the ER with a suspected clot. No clot was found!
August 1st: Felt like death (virus? Cold?) and blew 31% in clinic. Decided that pseudo wasn’t the culprit to my sickness (it is sensitive to both Cipro and Zosyn) and tried treating other bugs that may not show up on my culture.
August 3rd: Had an allergic reaction to Zosyn and woke up covered in hives.
August 12th: Started Bactrum and Rifampin for 10 days. No progress
August 27th: Started Levoquin and Minocycline and am currently crossing my fingers this cocktail works.
After two months of antibiotics I still looking for the right antibiotics for what is causing my lung function decline, fatigue, and afternoon fevers that do seem to disappear while on antibiotics, but instantly come back when antibiotics end. CF can be such a frustrating disease and I hate when these exacerbations seem to turn into months rather than weeks. I am hoping that I can get things under control before cold and flu season begins. I have already started stocking up on hand sanitizer for this winter.