Please Pass the Salt

January

11

Things I’ve learned in the past week

-I’ve realized that normally (and without a lot of conscious effort) I do excellent and effective airway clearance by using my vest and coughing when I need to. Having stopped for 3.5 days due to hemoptysis and trying to not cough much during those days (for fear of bleeding again), my lungs got really junky. Also my ER chest X-ray looked totally clear. Patting myself on the back for my excellent airway clearance habit.

-I like to sleep. The last 2 nights I have gone to bed around 9 p.m. It would be nice to be able to keep that up, but it makes for boring evenings with my husband because it’s literally dinner + tv, shower, nebulizers/vest, then bed pretty much as soon as we’re both home.

-I like hydrocodone cough syrup. Makes me sleep well and not cough at all while I sleep (which is great since my recent hemoptysis episode started because of rather out of control coughing while I was asleep). Unfortunately it is all gone. Hopefully I can keep my lungs under control without it.

-While I like the idea of going to work because of the opportunity to socialize and be helpful to other researchers and students (plus the paycheck), I much prefer spending the day in my PJs at home. A girl can dream…

-These two recent hemoptysis episodes make me feel fragile. Nothing felt abnormal or bad, but yet I started coughing up blood. I don’t like feeling vulnerable and not being able to recognize signs (if there even are any) that it is about to happen. I keep replaying the days in my head, looking for commonalities with how I felt, how my lungs felt, what my coughing felt like, etc. The only thing I can come up with is that I felt slightly asthmatic, which would cause me to cough more frequently and harder to bring up sputum if I felt tightness. I don’t ever really feel constricted and never feel “rescued” by a rescue inhaler, but perhaps I should carry one to use when I start coughing in these cases. Probably won’t change anything or prevent future occurrence but at least I’ll feel proactive about it and less vulnerable.

-I’ve been having joint pain in the days following my recent bleeding episode. I wonder if I’m developing arthritis. This time it’s in my wrists, hands and fingers. The day before Hemoptysis: Episode 1 just before Christmas, I was having quite acute hip/back/big toe pain which I thought was from a rapid air pressure drop, but now I’m wondering if it’s related to my hemoptysis. This week it’s just achy and my joints feel really weak (putting my body weight on my wrists/hands is painful). Again, I hate feeling like my body is weak and crumbling, but maybe I need to accept that it’s not the athletic machine it was 5-10 years ago.

-I miss being active and exercising. I think I’ll try stationary cycling after work today if I still feel ok by the end of the work day. And if my old lady wrists cooperate.

That is all for now.

This post has 4 notes and tag: # cystic fibrosis # hemoptysis .