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20 May 2013 @ 02:20 am
the silence of the body is frightening.  
 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?
Diane: Amelie kissmissdiane on May 20th, 2013 02:23 pm (UTC)
I can understand why you'd be frightening. You've dealt with all the hell for SO long that it's scary to start harboring hope that there might be a way to get it under control and that even more scary, that you'll be able to continue to afford the treatment and/or it'll still be available.

Modern drug politics SUCK FREAKING ROYALLY - almost as much as that shit GP ignoring obvious signs of distress
addyit: come to addyaddyit on May 28th, 2013 08:59 am (UTC)
if i can bear to be fair to him- he had his own issues. he ended up killing himself on father's day when his wife, whom he seems to have being doing all he could to appease for years, sent him divorce papers.
when he did it, he was expected for some kind of meeting, didn't show, so when she went to the family home and found him.
it pissed me off. especially since he had a son in his first year of university who had to come back from the funeral.
his suicide stank of revenge against his wife. no thoughts for his kids, of course.

doesn't strike off the swift "in, out" doctor visits and having to request my OWN tests for xray, blood, etc.
nice man, but if something was wrong, he didn't take his own damn advice (GET HELP IF DEPRESSED OR SUICIDAL) and take it.