addyit: (Default)
 huh! so, bronchoscopy tomorrow. 

the cavity on the right lung has had some debris and fluid that is stubbornly persisting since my last CT. so, they want to pop in and take a look. 

i'm on a high dose of cipro right now, which i combined with TOBI in the last week or two of my month. 

good vibes, please? my last bronch wasn't comfortable at all due to a misplaced IV. we'll be carefully watching it this time.
addyit: (Default)
 there's fluid in the large cavity again. 

after a spot of blood from the lungs this weekend, which greatly alarmed me, i was worried enough to call in... and was told they KNEW, and hadn't called me, about the fluid build-up on the last x-ray i had. (the only reason i can think of me not being informed was i got the x-ray on the way out of my appointment, and they gave me a three day TB/MAC test to do). i hadn't done the three day sputum TB test because i had issues with my fistula, and was put on a course of cipro- this usually means less productive sputum, so i decided to wait a little. unbeknownst to me, i WAS growing aspergillus, and another fungus, and they never told me. 

i also grew MAC on my last TB culture- but that was one out of the three, and at the very end of the 8 weeks they keep it.

why did i wait.... WHY.... 

so. this means a CT scan this week, possible IV antibiotics, more MAC meds, more antifungals, possibly a bronch and... well, you can imagine the rest. all at the busiest time of the year. 

i've decided i'm going to refuse hospitalization if they demand it. i can't see why they WOULD, though- i'm not bleeding, i'm not sick, i'm not feverish.....

i don't know how i'm going to tell my mom. 
addyit: (Default)

 ‎......fuck. i just realized something. 
it's now 11 years since i started getting sick, and 10 since i was diagnosed with crohn's and CF. that happened in april.
what a clusterfuck it's been. 

why is it the only accomplishment i've had is that i'm still alive? i had great odds, excellent odds, but i expected to have been able to do so much more than this. 

and here i am still scoffing at people for complaining they have "man colds".

ever want to just find the person and kick them in the teeth? 

i'm so tired of having to explain everything. right now, i'm expecting i'm going to get into a row with someone who disagreed with me on the use of painkilling treatments/decongestants in the instance of colds. 
i still don't get it. 
if you have the choice to suffer, or not, wouldn't you choose the former? i do on a regular basis so i don't feel pain, so i don't whine as much as i could, and, more importantly, so i can give people more hope. 
i'm turning 33. 
in ten years, i've lost half my lung capacity, developed two cavities that nearly cost me 3/4 of my right lung, 2 years of MAC meds, and now, hormonal treatments for bone health. transplant surgeon. aspergillomae. 2 years of unhelpful crohn's medications before finding one that worked, and dealing with the effects of that on my lungs, mentioned above. 

and i've got people debating with me about cold medications, and "letting the womenfolk deal with the medicines". 
maybe it's my hormones, since this menses is being particularly rough with me (i haven't been bedridden with this much pain from menses for years), 
but i'm really getting sick of having to explain, especially to people who don't know, and don't care! walk a day in my shoes, and i'll show you how long you'd fucking last without the meds meant to keep you alive and in some degree of comfort.
addyit: (Default)
i have put off talking about what's been going on for the last few weeks after i lost my initial post.

there's a reason for it, sure. i didn't want to go through it all again. but, i was inspired, so here it is.

hard to read. take care. )
addyit: (Default)
well, there's been a lot going on- so i should update.

i was pretty sore last night, and one of my friends worryingly asked if i'm in line for a transplant. i assure you, ALL of you, if anything that radical was in line, you'd be the first to know since you'd be some of the first i would go to for support.
i'm no way near such a drastic step.
i'll explain what's been going on the last week.
Read more... )
addyit: (Default)
frightening people is not fun. not when it's people you actually care about.

yesterday went... as it went. my mother took the day off to be with me, and we drove downtown together. i dropped off my sputum sample (fungal testing) and had my CT. then, a blood draw for blood cultures and other levels, and then, to medical short stay.

the people here and in the rest of the hospital were efficient, careful, and hard-working.

i think my nurse, however, placed my IV wrong. it may have pierced the wall of the vein rather than settled in it, due to the bruise i have now. (and what happened afterward).

i was given ventolin to try to ease down the asthmatic component, and oxygen during the procedure.
what blocks our lungs from the rest of our throat, and thereby activating our gag reflex? our vocal cords. so, in order to go down, they freeze the vocal cords with lidocane liquid and spray. this, unfortunately, made me extremely nauseated (gag reflex), but a dose of maxeran and a cup with suction took away those problems.
they gave me fentanyl, which was supposed to make me drowsy enough for them to work and for me to experience little discomfort, but i was quite awake through the whole thing. they tried giving me more, and more, but it never worked. i got a little dopey, but not as much as i should have. though i had my glasses off, and i had a cloth partially covering my eyes, i saw my lungs, but didn't.

on the CT, there is a mass of fluid building below the blockage, which in turn seems to be caused by a small blockage and a good deal of swelling. it's not nearly the size of a fist (maybe a child's fist?), but any fluid build-up is never a good thing. it can't just be allowed to sit there.
they still don't know what is causing the swelling, or the blockage.

they couldn't reach the blockage. it's not positioned in a way they could pop it out with a surgical procedure, either, so they said. just trying to get there made me cough too much. they took brushings (gentle brushes on the epithelial cells on the lung tissue) and samples to culture. this, in addition to the sputum sample i submitted before i went up, may reveal something- but those results may not come through for another few days.

apart from this, the rest of the lungs seem fine. great, in fact.

they still can't figure out why i feel fine. i shouldn't feel this good. not at all.

the hardest part was waiting for the procedure to begin, and waiting for everything to wear off. because of the amounts of opiates i had, i should have been tired, but i wasn't. (they kept hoping i would fall asleep and stop being troublesome, but i didn't).  i couldn't eat or drink anything for 2 hours due to the vocal cords being frozen (though i could talk. whut?! well, it's true, you can), since you can aspirate what you try to swallow if they're not properly awake.
this, in combination with the fasting throughout the day (and the hospital being behind in its work, an hour and a half late for my procedure), i was quite worn out.
the headache was worse than being hungry, though. hungry, i can do (and who wants to eat or drink with the stench of sterile water in your mouth??). headaches.... i just become a general pain in the ass (particularly if i'm not allowed to take anything for it).
all i wanted to do was tear all the lines out and run madly around.

that last half hour was one of the longest in my medical stays. it reminded me of being forced to lay down for half an hour after i had my last PICC out. (my mother nearly held me down. remember... i'm 32 this year).
i don't know why. normally i have more patience.
i guess it's because i wasn't told what to expect. you know... you're ready to fly out the door, and someone says, "Oh, by the way, you have to lie still for two hours/half an hour/an hour."
i felt like i was four years old again.

because my mother had fasted with me, had been a carefully guarded nervous wreck throughout the whole thing, i made her go to a hotel with me to have a small break of fluids and... get this.... cheese on toast. !! it was, by far, the best cheese on toast i'd ever had.
we went home. mum went to bed, and i had a bowl of curry my dad had made for us in our absence, and a beer.

i was warned i might have a fever in the night, and indeed, i did. it was, however, far more comfortable to wake in my own bed, only a little warm and sluggish, be able to go down and take my own tylenol, and go back to my own bed a moment later, undisturbed.
my chest hurts today, though. it must have been some deep spasms yesterday.
it'll be better by tomorrow, i think. and by then, maybe, they can advise me on what i have to do.

could be aspergillus. i've grown it before, briefly, but it had no effect on me.

a few days, maybe, and we'll see.
addyit: (Default)
nothing is solved, i had the procedure, and i'm fine.

still puzzled! but, we have to wait for culture results.

long answer will come later.

cripes, what a weird day.

bronch 101?

May. 9th, 2011 07:58 pm
addyit: (Default)
so, tomorrow is my first bronchoscopy.

i'm trying to decide whether to become the quivering child or the chaos-welcoming person inside that accepts everything that comes with CF.
it feels like a bit of both.

who else gets to think about how a PICC will look with their dress they bought to attend a wedding? OH yeah... sometimes, it's fun to scare the shit out of people. it's tedious, because you have to face their flat faces, but fun, because it reminds them what THEY could have to deal with if they only knew.

i admit, i'm hesitant about it because i don't know what will happen after tomorrow.

there is fluid in my right lung, and they don't know why. they're doing a CT to see what state everything is in, and examine everything close-up. and then, they're going to do the bronch to take a first-hand look, and wash away anything that's sticking things together.

i don't know what i'm growing anymore... and i don't think they know, either.

i haven't told my RL friends. 

i'm not going to until i know what's going on for myself.

there's a ball of ache at my coccyx.

there is no pain in my lungs... and i can't decide whether this is a good or bad thing.
addyit: (Default)
morning: missed, due to nausea and vet appointment.

evening: half dose, no saline. nothing to report.
addyit: (Default)
as usual. nothing to report.

day forty.

Apr. 17th, 2011 01:56 am
addyit: (Default)
both as usual. no saline, due to nausea. half doses. no unusual production.

stopped cipro today. mood swings stopped.
addyit: (Default)
too nauseated for saline.

TOBI: nauseating, bad taste, same effect. sucked on lifesavers'. inhaling through mouth. half dose.
addyit: (Default)
both doses done. uneventful.