May. 6th, 2013

addyit: (Default)
 i can't sleep, for tomorrow, i start Kalydeco. 

it's felt like my mother, mostly, but i, too, have fought all this way very much on our own. the clinic has helped a little when we've supplied the majority of the information, but it feels as though we found everything first. 
we were actively seeking it, first, before all. 
i get the feeling there's going to be a lot of peering in, of doctors, residents wanting to see me take the first dose... when it's not something i'm going to be that willing to share with them. 
it's personal. 
i'm more than willing to be a guinea pig for many medications, as i am for this one, but that may go a little too far. 
why do i expect this?
because it's in my notes, it's known to many of the nurses and doctors here. 
why can i see people, who don't even know how many pills i should take or how i should take it/what i should take it with, crowd in and expect me to play the patient being bettered by medical science?

it makes me want to just take it early, NOW, and get it over with, only i have to eat with it, and i have no room in my stomach to eat more. all i can do is wait for this stomach to get a little less full. 
addyit: (Default)
 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. 

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addyit: (Default)
My Crohnie/CF Appendix.

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