Please Pass the Salt

January

First, I persuaded the prescription plan people to obtain my “doctor’s preauthorization” for me. Apparently being disgruntled has its perks because the medication was approved in less than 24 hours (huzzah!) compared to the typical 7-10 days I’ve experienced in the past.

The next few days are jam-packed:

-Tomorrow I have an appt with the doctor that makes me so anxious I would rather have dental work done. Felt my stomach sink and blood pressure rise when I called to schedule it yesterday.

-Saturday I’m going with my grandparents-in-law out of town for the day for a family event.

-Sunday I’m going to Matt’s sister’s baby shower, also out of town and also with my grandmother-in-law. It will be a long day, especially since I’m driving.

-Sunday night my mom is coming to stay the night to go to…

-CF clinic with me on Monday morning. I will be glad to go since I haven’t seen my doctor since my 2 recent hemoptysis episodes, but the drive and rush hour morning traffic in Houston is kind of awful. Glad I will have my mom’s company.

Hopefully I won’t get too tired/exhausted/run-down over the weekend. Friday’s appointment won’t be tiring, but gives me the heebie-jeebies thinking about it.

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January

The maze of prescription plans

Magically my “doctor’s preauthorization” for one of my medications expired long before the actual prescription. Being as it is, my insurance company makes me jump through an inordinate amount of hoops to get this medication (Dexilant, my proton pump inhibitor for acid reflux). Not only are there a lot of hoops, but after I clear a hoop, the only way I find out there’s another hoop to jump through is when the medication never shows up in the mail.

So now I need “preauthorization” to fill this prescription, which is akin to my doctor saying I need this medication—which is EXACTLY what a prescription says. Why does my insurance require this information twice? And moreover, why is it not obtained WITH the prescription renewal for the SAME DURATION of time? And why does my insurance have neither this doctor’s name nor phone number on file? Shouldn’t this be on the script for the prescription? Surely I can’t be expected to pull this doctor’s phone number out of my brain on a whim? Also, why is it the patient’s responsibility to acquire preauthorization? And if so, when was I going to be notified? Should I just use my magical powers of deduction after enough time passes without my medication arriving in the mail?

I’m seriously considering stopping this medication. It works really well and at the time I started taking it 2 years ago, nothing else did. But maybe the generic, earlier generation of this drug might work for me. Although buying over the counter would end up being more expensive than this pain in the butt, non-preferred, doctor’s preauthorization required, jump through a million flaming hoops medication.

I just want to yell at someone or kick out a window after talking to my prescription insurance people.

This post has 3 notes and tag: # cystic fibrosis # insurance .

January

A fun day at work

Today has been the most fun day at work in quite awhile. For my newer readers, I work at a multi-user analytical facility at a large research university. We have lots of fancy, expensive “science machines” (microscopes and spectrometers) that engineering and science students use (kind of like CSI, but not really).

Today’s highlights include:

-Some sales guys are visiting our facility to do a demo of a fancy microscope (optical profilometer) that can take topographic images (of pretty much anything) with angstrom resolution in the Z direction (vertical). I hope we buy this new science toy.

-The sales guys treated me to lunch at Chipotle

-My favorite service guy is here repairing another instrument

-An undergrad student I trained two summers ago who I haven’t seen since just stopped by my office to tell me hi, that she’s graduating, and all about her new job. Things like this make me really like my job.

-I neither have a headache nor feel exhausted nor want to hide under my desk and sleep for the first time in a week. I think maybe I had a mild cold/virus.

This post has 1 note and tag: # science # metrology # microscope .

January

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 1 note and tag: # cystic fibrosis # hemoptysis .

January

Vacation uniform (a.k.a. pajamas)

The last two days I’ve donned my “vacation uniform” as an encore to my 10 day Christmas break, because I should take it easy—what with my bleeding lungs and all.

They are still bleeding a bit. I wonder how long this takes to stop for most people with CF? It’s been nearly 48 hours since it started. Granted, this time it was mouthful after mouthful of liquidy blood rather than a single one, so maybe it will take longer to stop. In the past it has stopped within 24-36 hours.

In times like this, I’d like to be able to press fast-forward until the bleeding is completely gone. Instead, I’ve noticed my instinct is to attempt the next best thing: sleep until it simply goes away.

Only the problem is I can’t sleep anymore. Thursday night (or rather early Friday morning), this was easy to accomplish with my hydrocodone cough syrup. I just medicated myself around the clock to keep from coughing and it helped a lot as far as the bleeding slowing down, me passing the time without memory because I was sleeping and then there’s the added bonus of so much fabulous sleep.

I spent all day yesterday mostly sleeping with an occasional wakeful few hours reading and eating. Then back to bed for an early night. But then today, I seemed to max out my sleeping quota by 9 a.m. and noticed my cough syrup supply dwindling. Since I’m still coughing up a bit of blood in my mucus this evening (been the same all day), I figured the prudent thing is to preserve my stash for at night when I’m asleep when I really need to control my coughing but can’t consciously do so.

It’s hard to not cough when there is so much in your lungs you need to clear out, especially when the action is so subconscious because you do daily, hourly for your whole life.

I hope the last bits of blood go away soon. The weather was so perfect today (low 70s and sunny) and I hate that I can’t go out and exercise in it. (I’m assuming I shouldn’t since I’m supposed to avoid coughing and exercising generally causes that for me.)

On the plus side, I’ve read nearly 1300 pages of a 1500 page book. I am no great reader and this is by far the most pages I’ve read in a single book. My motivation is that it’s book #5 in a 7-part series and it’s the ONLY one not available as an unabridged audiobook. How cruel is that to us slow readers? I’ve been reading it ever so slowly for about 4 months, but really kicked into high gear over Christmas break when I read the majority of it.

This post has 1 note and tag: # cystic fibrosis .

January

Back home

My lungs sounded a little gurgly but my X-ray was fine. The ER doctor talked to my CF doctor on the phone and made an action plan, which is…

Wait and see.

Seems like the bleeding is stopping/clotting. They sent me home with another antibiotic prescription and a cough suppressant (hydrocodone) because the likely cause was excessive coughing (which I had been doing all day and what woke me from sleep).

I hate feeling so fragile.

Chances are this will happen again. And when it does I’ll probably gave to make the trek to Houston and have a bronchoscopy and/or embolization because it is my hunch that it’s the same spot that keeps bleeding.

The prospect of a bronchoscopy terrifies me as much as an embolization. I suppose I’m rather lucky to make it 30 years with these windbags without ever having a bronchoscopy. Having the procedure done doesn’t make me anxious. It’s the prospect of being pretty much awake while it’s happening. I get really tense/anxious. I prefer being totally unconscious for things like that.

Anyway, there is only one 24-hour pharmacy around here and it’s about 20 minutes away. The drive was eerily quiet and peaceful with the roads so empty, which feels really strange in a college town.

Got my drugs. Decided I better have some 4 a.m. breakfast since I’ll likely sleep really late and my stomach is growling. My hydrocodone and strawberry poptart await me…

This post has 2 notes and tag: # cystic fibrosis .

January

Murphy’s Law of Cystic Fibrosis v2.0

Remember that statement about coughing up blood only late at night, on weekends, or when you’re about to go out of town? Well, it’s 1:30 a.m. and I’m at the ER coughing up blood.

It woke me up. I was coughing a lot and in my half-asleep/half-awake state, I remember thinking “Wow! This sputum is very watery. And salty.” Then after I woke up enough I decided to spit into the sink, lo and behold, a mouthful of blood.

Seems like its clotting a bit but it also is more blood than I’ve ever coughed up at once. Feels like its coming from the same spot (upper left lobe). Hoping it stops bleeding and they send me home. Matt and I are both very tired.

I’m fearing an eventual embolization for this spot in my lungs, but hoping it can wait til it happens the next time. I really don’t want to spend a week in the hospital.

This post has 1 note and tag: # cystic fibrosis .

January

This torn, typed note came by mail in an envelope with no other note or explanation. Seems creepy, right?

Of course, I knew it was from my father-in-law because 1) I recognized his handwriting and 2) he occasionally sends random items to me by mail with no explanation or even future mention of it. It cracks me up.

On closer inspection, apart from the fact that the quote seems rather creepy and threatening when it arrives in an envelope in the mail, I recognized that it had thumb tack holes and recall something of the sort being pinned to the wall of Matt’s old bedroom at his parents’s house.

Matt confirmed, jokingly saying his dad slowly sends items from his old room to us in the analogous way that after we got married, my parents delivered two storage tubs and a sack of my childhood/teenage things under the guise that they “thought I would want these things” (when in reality I think it was to symbolize that I had completely grown up and moved out of their house).

I was a little sad when looking at this paper though, because it had hung on Matt’s wall along with other motivational quotes/photos/mementos from his high school running career (he was quite good). It had been important to him to type out that quote and hang it on the wall where he could see it everyday. And it stayed there for more than a decade untouched, but now is removed/destroyed.

Who knows why. Likely an accident related to some hubbub caused by the socially misfit dogs that end up getting adopted by his parents (his dad is a vet, and their 3 current dogs are truly a comical combination), and not a deliberate planned “move-out” of Matt’s old stuff as occurred with mine.* But the fact that the words on that page were once important to him makes me sad that it’s now marred…but glad we now have a piece of it to keep.

* In my parents’ defense, they have moved since I was in HS and my room at their house has been redecorated so while I like the look of it (I helped pick it out), it was never the “mausoleum” of my high school self that Matt’s was.

This post has 0 notes and tag: # notes from the past .

December

Merry 3rd day of Christmas

Wishing all my internet friends a belated merry Christmas. I’ve been rather “unplugged” the past few days, not because I’ve been in remote, wifi-less locations, but because I’ve been busy with family and relaxing.

A summary of our exploits:

-Last day of work was last Thursday. My family came to visit that night, intending to stay til Saturday morning. But my dad was sick with an awful cold and ended up staying home so we instead had a shorter, fragmented family Christmas at our house, complete with my live-in chef preparing two delicious meals and our two house guests leaving Friday night.

-Spent Friday night and Saturday morning just hanging out with Matt and the dog daughters at home.

-Drove to Matt’s sister’s house Saturday afternoon to spend Christmas with Matt’s family. Matt’s sister is a fabulous and self-taught chef who also cooked two knock-your-socks-off meals that put our fabulous little Christmas eve eve dinner to shame. (I still can’t stop thinking about the food…) We played board games, had an interesting night’s sleep on an air mattress that made Matt feel sea sick, got up “early” (because my therapy takes SO LONG to do) for Christmas morning church, had the 2nd of the fabulous meals, opened presents, then hit the road home,

-…minus one dog (Queen Sadie) who went home with Matt’s parents so his dad (our veterinarian) can remove a weird growth off the back of her hind leg that looks suspiciously like part of the male reproductive system. We all miss Sadie, especially her two younger sisters who are unsure of how to go out into the backyard without her leading the way. Not even stuffed animal Christmas toys cheer them up (because they don’t have plastic eyes and anyone who’s anyone knows dogs don’t like stuffed toys without plastic eyes to rip out and then pull the “brains” (stuffing) out through the vacant orbitals.)

-Christmas evening, after we got back home, we visited Matt’s grandparents (who live here) for a couple hours and brought along a good friend who is a vet student and on-call for surgery at the vet school over Christmas break (bad luck, as he was also on-call for Thanksgiving). Luckily there were no emergencies on Christmas day or night, but he had a pretty impressive patient earlier in the week—a female tiger. (Our university’s vet school/hospital is kind of the flagship/hub for exotic and large animal care in the state of Texas, so there are always interesting patients.)

-I now have an entire week off. So far it has included sleeping late, reading, sewing, cutting Matt’s hair, watching Netflix and playing video games. Matt is teaching me how to play Portal 2. We played co-op mode yesterday and trying to mentally grasp the map from two players’ point of view in a first person shooter game is about to make my brain crack. But I am not giving up! I will master it.

-I was reminded yet again that my lungs hate to be anywhere that is less humid than where we live, which is pretty much everywhere where our families live. I kind of felt like a dedicated toad in the middle of the street in the summer when we got back home. It’s definitely not good when your lungs are trying to fight an infection. I started TOBI on Friday, so I guess I’m hitting my lungs and sinuses double-duty, since TOBI and Bactrim are for different bacteria. Sadly, the Bactrim is almost done. Wish I had another week.

**If anyone has been keeping score, of the 3 family Christmases we were supposed to attend, 2 were foiled—the first at my grandparents’ by my bloody lungs, the second at my house because my dad was sick. Here’s hoping for better luck in 2012…

This post has 2 notes and tag: # Christmas .