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28 May 2013 @ 12:02 am
 finds the nights so beautiful here, in a quiet room with a window opening into the city.

the lights are golden, with soft green, and you can look at each window, guessing at what each occupant is doing.
very like Rear Window, but hopefully, no murders.
the last time i was here was during the hockey riots. that was... interesting.

i wrote that two weeks ago. 

i couldn't concentrate to finish, and i'm not sure i can now. though i can look at my cat and to her meows, make kissy noises at her while typing. no comparison to a few long pets. but now she's found her stinky little lamb toy she can kick senseless, i think i'll write a little of what i've been thinking about. i've mostly been thinking aloud on facebook. 

there is a peace of mind there i don't have right now.

this kalydeco business is scaring the fuck out of me. 
the waiting is worse than waiting for the actual drug. before i got it, i thought, hey, no bother, i'm at where i'm at, i have my regular meds, i can go into hospital if i need to, no problem. 
and now that i HAVE it.. i'm terrified i'm going to have it taken away. 
my mother's plan changes in June. due to my mother's union busting her drug plan's nuts, they've agreed for me to be given two months more funding. after that... we're hoping Pharmacare will have made up their mind about it in BC. 
Quebec is making their decision on the 2nd of June, and Alberta will soon follow. 
i don't think i need to go into too many details about why they might refuse it. 300,000$ per YEAR? i'm convinced BC would prefer paying for services they'd be forced to pay for, like hospitalizations, other less expensive medications and transplants. 
it scares me because i'm better. i'm WELL. i've not been this well for over 6 months, over the time i've been trying to shake the breathlessness and low exercise tolerance. i couldn't walk across a room at a normal pace without coughing. now, my mother, who has a healthcare worker's walk, finds it difficult to keep up with me. 

i don't know if it's the combination of the cayston and the kalydeco. i don't know. 

and then i think about people who have died because they couldn't get this medication, people still waiting for it, people who are desperately holding on to get the combination drug- maybe VX 809 and K. 
the children who are too young for it, because they don't know the effect it would have on young young kids (and are probably only guessing on those still not in their teens yet). 

for all my wellness, i have no energy. partly, this comes from 6 months of hermitage in not being able to move far. also, i'm terrified. no panic attacks or anything like that. 

what is this miracle outweighs itself? 

what if it stops? 
what if they say, "No, we're a bunch of cheap bastards who would prefer to see you sliced open like a carcass and have your pus-filled lungs snipped/scraped out than give you a chance at a normal life"?

it makes me think of the days where there people recoiled from monetary gain at the expense of the suffering. 
like with insulin. 
it didn't happen often, i KNOW, but the logistics of how Kalydeco happened, and how it will be paid for, rankles at me. it rankles at doctors who treat CF patients, CFers, their parents (all who have raised money for something like this, only to be given an impossible price tag). can one person purchase an entire mortgage per year?

CFers should have been given shares in the company, just to be able to afford the medication. (some of the cost). 

it was easier before they gave it to me. way easier. 
all i've been doing is talking about it. there's no room for talking about human things.
CF has always been on my back, and now it's enveloped me, mocking me. 

i've seen someone die with pulmonary fibrosis (medication caused, not another reason). i don't want to die that way. 

20 May 2013 @ 02:20 am
 i have felt this three times.
1.) after my initial, terrible lung infection. after 5 months of suffering, weight loss, breathlessness, production of yucky junk, all through a semester of school and my GP completely NOT seeing what i was going through, i was finally referred to a respirologist (after demanding, in tears, for this) who prescribed levaquin. i felt instantly better the next day. 
i was so angry, at it having gone on for so long. it was through so much trying, and getting no where. it's what i presently call "throwing the ball back". you know how when you play ball, and you throw it back and forth? well, it's one of those situations where the situation/ball was thrown back, constantly, to me and my mum, for us to deal with. i ended up with irreparable damage. this happened again later, with another doctor who missed things, but this was the first time, and something i can never forgive this doctor for. not that i need to- he's dead- but i still can't. 
2.) my first Remicade infusion. i was frightened at the possibility, since no one had told me what to expect, at ALL. we received a DVD telling us what to do, but never what to expect. i honestly thought i was going to have a reaction and die, right there. instead, the pain slipped and drained away. it was as if it slipped down into the ground, and disappeared. it had been months, nearly a year, since i had been pain free. i felt the exhaustion, finally, that pain gives you when it's incessant. i wanted to kick myself at the fear i had, and how long i had put it off, even though the other meds did not work/made me worse off. i was afraid of the immunosuppression, with good reason, as it turned out. 
3.) now this. Kalydeco. 
this improvement, this change, frightens me. no coughing (if there is, it's brief production, thin, and slight yellowing). no sinus issues past the first week or two (despite a few frogs) and no shortness of breath. 
the first instance of shock happened when i bound up the stairs, unthinking, to fill Oona's dish, and i waited for the shortness of breath... it never came. 
i don't need liners. i don't cough. i can go for walks. i don't know what my pfts will be like... but they will have improved. i felt no huge improvement in hospital, but once out- things escalated. 
it's a feeling of shock. and anger, too, (not for me, but since i know this drug isn't readily available for people who need it). the cost angers me, just like the cost of the Remicade did and does. there is something wrong on people profiting on another's suffering to this extent. this is, at this point, a lifelong medication, financed mostly by donations. CFers offered themselves as subjects, expecting nothing in return except MAYBE something that could change their lives. 
what about the other CFers who don't have this genotype who would happily try it, even if it did nothing? just to SEE if it made a difference? say, those on the transplant list or a hair's breath away from it? some ARE taking it off-label in the US. 

these times terrify me. puzzle me. piss me off. 
i'm happy, but it's a fucked-up happy. 
i want my friends to have the benefit of this drug. CFers with kids, who have shitty PFTs and bowel issues, those who have sinus surgery once, twice a year. i want more kids to start taking it before they become pancreatic insufficient. 

what about the G551D kid who died from going into respiratory failure after going in for a procedure to have his adenoids out? he was 4. he had a g-tube. too young for the medication. it's not as if they can't swallow pills- they become champs at it at 2 years, sometimes younger, rather than gag down enzyme pellets. 

it's going too slow- it's TIME to move faster with this. 

i don't know what the long-term effects will be. i don't know what they will be with the immunosuppressants with me. i'll probably get cancer, i don't know... it happens to people who have had transplants. 

i don't fucking know. 

isn't it time? shouldn't this not be about how much a drug company makes? 
there are good precedents for good medicine- like insulin. why can't we follow that?
 i'm exhausted from today. 

it's day one of Blue Lightening, and all i've been doing is talking about it, all day. 

the unit is excited, the clinic is excited. i was woken 5 times by the resident, CF doctor, nurses, all reminding me about my "new medication". when the fifth nurse arrived to remind me, i told her i had wanted to rest. (i hadn't been able to sleep the night before because of the stress of the upcoming day). she told me she wanted to ensure i was going to get it at the right time, and be able to space out the medication as it was prescribed. 
they were, of course, excited, and were probably wanting to see me take the medication myself. 
they didn't know, of course, i needed to eat something with it (preferably high fat, 20g) and needed to follow the kinds of hours i run at home. 8 am-8pm dose is NOT how i live at home. i gently told my final nurse visitor, Anna, this point. 

i am, naturally, a little bitter about my clinic. 
they're excited i'm here, since they can see how it responds to me in these last few days i'm in on these IV antibiotic meds during this tune-up. 

they don't seem to realize the need for this push of fat with the dose, and that i would prefer to take this medication in private. 
it's been me and mostly, most of ALL, my mother who have pushed to finally get this medication into our hands. the clinic only got on board, dithering since January, seemingly more willing to wait until Pharmacare covered it. 
we've done most of the leg work ourselves. we knew all the information long before the clinic did, because we actively sought it. 
it was only when the pharmacist at the clinic came back from extended leave (i hope it wasn't anything serious. :-( she was gone a long while. they had clearly begun to depend upon her heavily) that we felt we finally had someone in the clinic to help. 
a phone call from my thorasic surgeon must have helped, too, because suddenly many things were moving forward that had been left to dither for several weeks. 

i wish i could put this onto them being stressed from a heavy load at the clinic due to the change of the seasons, but i DID wonder.
i found out the real mainstay respirologist was due to get a major surgery done this week- a knee replacement! poor man. i hope his surgery went well- those are nasty. and take a long time to heal. :-( it's going to be hard at the clinic without him.

finding out there was a CF kitchen and laundry facilities was marvelous. shame the CF clinic never told me about it. :-/ i learnt from one of the nurses. so, it meant, a clean fridge, washer/dryer, toaster, blender, microwave, a table and chairs to sit in, and sterilized real crockery to use. it's been so nice to be able to eat out of a hospital room like a civilized person, even if it's for a cup of tea. 
mum and i are planning to add a sight more pieces of cutlery, glasses, and a teapot that can withstand the vigours of a sanitized wash. even things from the Salvation Army would do. the kitchen have most things- maybe we could add some high fat items to leave behind in the larder. (canned, junk food, things that won't spoil, etc). 

educating people about these things is difficult, especially if it's the same thing again and again. 
i LOVE that they want to learn about it. i've even put a video on my reading list on how Kalydeco works. they've found that very helpful. 
09 April 2013 @ 10:56 pm
i wonder how many of CFers take matters into their own hands when it comes to their meds.

say, when you're sick, clinics dither and comci com ca, and you don't want to take the extra step of having to go in the hole?

i did, and i hope it's going to work for me. i AM telling them what i'm doing, i just hope it's the right thing. 

it's so frustrating to call the nurse at clinic and have them say, "Well, I don't know..." and then have to wait to call me back (either doctor or nurse). i do so prefer email with this, and i know some of the doctors prefer it, too. (not all, sadly). 


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16 March 2013 @ 01:10 am
 just had a disturbing memory.
i remember my first bronchoscopy, and how difficult it was because the IV wasn't placed correctly. they were trying to get into a MAC cavity to see the state of things, and to perhaps drain it, culture it, etc. 
afterwards, my respirologist, who is normally very cool and calm, was very visibly upset. they couldn't enter it because it was in an odd place (like mine usually are), and what upset him most was, in his own words were, "the rest of the lung is FINE. it's PERFECT! good tissue, good color, nothing wrong!"
he wasn't the physician in charge of me when this cavity suddenly blew up, though there had been signs. the physician (who was sure i could trust, and only want to be seen by, since i knew her and was sure she'd remember me) missed the warning signs. she was partially retired, and because it was in another clinic, not at my usual setting, things got missed and messed up. so, in the process of this 6 months, perhaps longer, this cavity popped up (the size of a fist) and nearly led me to lose 2/3 of my right lung. 
this is where i first learnt the real meaning of the word "incompetence": in that, those who are incompetent do not realize that is what they are. i got more information from other doctors in the Center for Disease Control (whom i didn't trust as much) in regards to my lungs than i got from her in that time... and since she was the one who had confirmed my initial diagnosis, it really deadened something inside me to this particular doctor. 
she was brilliant. she WAS on the money. but it just doesn't seem to work as well when these doctors partially retire. it comes to a time when they've seen too much death, they outright just tell parents or patients to prepare for death (which outrages them, as you can imagine) to make them realize that it is time to retire, or partially retire. 
when you lose the sense of hope, the sense of focus, the sense of possibility of survival and life in spite of seeing so much death, when you MISS things or brush it off... it's time to move on. 
i think something huge when on at my CF Clinic when the MAC cavity appeared, and somehow, this doc had NO notes, or knowledge that it was coming until it was there, BANG, full and filling with fluid. yes, i had no symptoms. but how can i continue to see her and be easy in her presence after this. 
i can't... because she has still failed to recognize her own incompetence. she had been ready to take me off my MAC meds because they had done all they could do (until she saw the cavity in my x-ray, where in CT, it was the size of a fecking FIST). and, later on, finding out i was on the WRONG set of meds all that time. whereupon changing them, taking them, the cavity shrunk and i've now been MAC-free for months. all it took was to send a sputum sample to a relatively isolated lab in... Texas, i think. sure, we don't do that for everyone, but with someone with CF and aspergillus as well, i would think the effort could have been made.... and it certainly was once the main doctors of the Center for Disease Control got involved. 
i lose a good deal of lung function because of this. but? i didn't lose 2/3s of a lung. not yet. i had my surgery date set and everything. 
THIS is why i like to try medications before surgery. most surgeons are all blade-happy, but i had one who was willing to TRY the meds first, just in case they worked- and they did.
i must be aware of semi-retired doctors. once out of the game, they lose the stamina. not their fault. but... must be aware. 

(the last bit about the docs is silliness. i like my docs lots. i just like to tease them, too).

with the amount of coughing i was doing in trying to walk, talk, by the end of this entire day i was turning into Gene Wilder in the Producers.

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why does mum hate these appointments?
the very need for their existence, and the genetic guilt. some of you know how powerful this is.

11 February 2013 @ 05:45 pm
 well, the inevitable happened, and it has been happening over the last few weeks. 
the fistula reopened, and is now a hole. it's small, though, and weeps. 
it's been painful. the skin cracks, the perineum is raw, and i'm up to trying anything. 
i've used barrier cream to try to save the raw skin, flamazine to ease the burning, an ointment
to numb the sore areas, and zinc oxide cream to try to protect/repair. 

i know none of it will stop the disease, but i'm desperate to try to ease the skin. 
the bladder incontinence doesn't help. i need liners, and i can't change them all the time. 
and now, last night. 
i've had some bleeding (partly why i let my GI know, since any signs of bleeding are a definite
sign of recurrence of illness). that's been a few weeks now. 
i was half asleep when this happened. i had to wee, so i got up and went to the loo. groggy, 
i went to dry with some paper... and came up bright red. 
the toliet seat was smeared with bright red blood, as was the bowl. it looked like more than it was, i know, but i didn't
have my glasses on. 
it was either from the rectum or fistula. i think it was the fistula. 
it took a while to clean up. there was still blood there when i was in just now. 

it's been a long time since i passed that much blood, on its own, and fresh. i can still smell it. iron. 
it definitely wasn't menstrual blood.

it really made me panic. 

it still kept coming. i had to clean up a good deal later- one pair of knickers may never survive. 

i am at the point of trying manuka honey on the fistula. it's ideal dressing material, antiseptic, washes off easily, and stays put.  i have some that i use for sinus rinses, and i have application tips (so i don't mix the clean with the dirty).  

i know it's freakin' nuts. but that was a mini murder scene last night. 

but if 750mg of cipro for 3 weeks doesn't stop the fistula progression?

i am really out of options. humira and remicade isn't an option because of my lungs- neither is predisone. i was just reading over my options
my GI sent me. here it is:


1. There is experimental evidence that a blood hormone called GMCSF has been used in Crohn's disease with varying success. It is not an immunosuppressive medication but it is very expensive. I will likely need you to see a hematologist who use these medications more and may be able to find a way to supply this. 
2.  There is a new medication called vedolizumab which is a tested medication for Crohn's but it is not yet out on the market. Compassionate release might begin in 9 months which is a ways away. It is a medication similar to Remicade but it is supposed to be more gut specific. Potentially it still can cause problems with infections. 

3.  A temporary diverting colostomy has benefits in putting the perianal disease in remission. It sounds bad but it is tried and true. It has worked for many patients with bad perianal Crohn's. 

i think i just need a hug from a friend, be it crohnie or not. it's not something i can talk about too openly on facebook.
medical talk like this spooks people.


18 January 2013 @ 08:11 pm
 "Don't worry! You won't feel a thing.... till I jam this down your throat!"
i'm kidding. 
they freeze everything up before they slide anything in. 
as i said, it went well. they discovered i have a strong "tolerance" to the medications they gave me. (fentanyl and some kind of muscle relaxant). ? mum said i just metabolize things quickly, but i saw some eye-darting. it worked out much better than the last time- the nurses were great (they have one for bronchs now, which they didn't before. the nurse on the floor was good, and was able to get the IV in nice and easy). the IV wasn't interstitial, i DID get plenty of benefit from the meds (though i was more awake than i should have been, they said) and they were able to open and empty the cavity, while doing brushings, get a good sample, and wash everything out. 
the best part about it was i went to the hotel and had steak and chips. OMG, yum. it was the first meal i've actually been hungry for in weeks, and finished a meal and feeling sated. 
i shouldn't have had the double dark and stormy, perhaps. i dozed and slept on the drive home, and went right to the couch, feeling very grumpy and headachy. so, i'm just relaxing.
life is good. 
17 January 2013 @ 07:06 pm
 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.
07 January 2013 @ 12:55 am

on facebook, i'm REALLY freaking out about the Idle No More movement. 

well, not that. it's the possibility of fracking that's freaking me out

let's NOT have this here. no.... fucking.... FRACKING. ARRRGHHH!!!!