Please Pass the Salt

-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.

Good news: there is no more blood and very little sputum. It waned sometime between Saturday and today, thanks to my antibiotics (Bactrim DS).

I took a sick day from work yesterday and stayed home resting (and reading, watching netflix, playing video games and sewing) and waiting to hear back from my CF doctor about what to do—expecting her to say I need IVs. (I even packed my stuff in case I had to go to the hospital, which I’m convinced is good ju-ju if you’re hoping you’re overreacting as to the severity of your situation.)

Apparently wait-and-see is the consensus for me. I figured that coughing up a few tablespoons of blood out of the blue that slowly wanes over 2.5 days is kind of a big deal, but that’s why I consult the doctors—they have much more experience with this than me.

The important thing is that it stopped and that my antibiotics started to kick in, which in my scientific mind supports the idea that infection was the cause. This begs the question of at what point during the subtle, slight increase in mucus over a couple of months do I draw the line and say “ok, it’s time for antibiotics”?

The last time this happened was 2 years ago at the end of a 2+ year no-antibiotics streak and it kind of hit me that I needed to be more conservative and proactive at deciding how I feel and when is too much junk in my lungs. It’s hard because the change is so subtle and slow. I kind of wish it would knock me on my butt or have any kind of symptoms. The only thing the two situations have in common is allergy-related wheezing, so probably I should be on alert when I feel that way (although it happens frequently with no ill effects). It’s frustrating to not be able to predict or know when to expect bleeding and I think that’s why it scares me—it catches me so off-guard.

I added back pulmozyme last night, hypertonic saline this morning, and am now doing my vest tonight for the first time in 3 days. I kind of don’t feel like I drastically needed it as much yesterday and this morning as I felt on Sunday (Sunday was kind of junky-lungs-awful), probably because my antibiotic is doing its job and I am coughing up very little sputum (hooray).

My weekend bleeding episode has put me a little behind with Christmas preparations. I still have 3 more gifts to sew and need to clean a little because my parents and brother are coming Thursday. Hopefully I can get that done tomorrow after work.

Well, I haven’t sprang a bloody leak in my lungs in about 20 hours. I am trying not to cough (hard when you have CF), but the little bit that I can’t help is bringing up mucus + coagulated blood. Not a lot. Just a bit. The same amount as when I was at the ER last night. I was kind of hoping it would quit altogether overnight.

Last night I spent the evening like a normal person by neither doing my vest or any of my nebulizers. It was rather freeing. I went to sleep at 9:30 (with the assistance of good ole NyQuil). The antihistamine kicked the 24-hr allergy headache I’d had and the cough suppressant kept me from coughing in my sleep. I’m sure many of my CF readers will scold me for this, but it was the most beautiful and restful sleep I’ve had in months with the added benefit of not waking up coughing blood everywhere.

I just talked to my clinic’s on call doctor and we are playing the waiting game: waiting for the bleeding to (hopefully not) happen again, waiting for the antibiotics to really kick in, waiting til tomorrow to see what the real CF doctor wants me to do. If it happens again, I’m supposed to go to the ER in Houston (2 hrs away where we had a terrible experience last time) and will probably have an embolization. Yuck. Thinking of this terrifies me.

I’m betting tomorrow my CF doctor will call me to tell me they want me to do IVs. Which means driving to Houston and being admitted to the hospital for a few days. The prospect of IVs doesn’t bother me, but the hospital does. In my one experience there 2 years ago, they have sub-par record keeping on patients’ charts, were extremely untimely at delivering my medication for my nebulizers and had no idea that you can’t use the same neb for certain medications because it will render one inert or that you shouldn’t keep my (refrigerated) pulmozyme in your (warm) pocket for an hour before you give it to me. This is to say nothing of the legal intervention required to get an accurate bill almost a year later.

I’m now debating another NyQuil-induced sleep in hopes everything will spontaneously resolve itself by tomorrow.

P.S. Why do my lungs bleed when they pretty much feel a-ok? This is the case every single time they bleed. I feel fine, then cough up blood.

If you have recurrent and worse symptoms and decide that being admitted to the hospital is unavoidable so you pack EVERY SINGLE MEDICATION you take, nebulizers, vest, a few changes of pajamas AND your toothbrush to take with you to the ER, you are guaranteed to be diagnosed as healthy as a horse with X-rays that not only don’t show fluid (blood) pooling in your lungs but also don’t even look like you have CF and will be sent home.

Just to be safe, I’m going to continue the cautious approach of limiting irritating nebulized medication and airway clearance in an effort to not dislodge the clot that has obviously stopped the bleeding in my precious lungs.

P.S. missed Christmas at grandma’s today/tonight. :-/