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froggy Lately every time I go into chat no one is there....and no one shows up!


Sevenstars I seem to scare off people from the chat room. ._.


Sevenstars Where are the chatters?

I'm sorry you have high sugar Piper! I'll keep my fingers and toes crossed you don't get any more of them.


Piper just got my first ever "pre-diabetic" sugar reading ah, prednisone...have i told you lately that i love you?


catboogie i know what you mean, shannon. i really felt like i was giving into CF and giving up some of the little freedom i had left when i started rotating azli and colistin. but i'm so glad i did. it has paid big dividends.

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froggy on Tuesday 09 March 2010 - 21:24:32 Lately every time I go into chat no one is there....and no one shows up! Sevenstars on Tuesday 09 March 2010 - 21:13:22 I seem to scare off people from the chat room. ._. Sevenstars on Tuesday 09 March 2010 - 20:59:53 Where are the chatters? I'm sorry you have high sugar Piper! I'll keep my fingers and toes crossed you don't get any more of them. Piper on Tuesday 09 March 2010 - 17:49:15 just got my first ever "pre-diabetic" sugar reading ah, prednisone...have i told you lately that i love you? catboogie on Tuesday 09 March 2010 - 14:38:02 i know what you mean, shannon. i really felt like i was giving into CF and giving up some of the little freedom i had left when i started rotating azli and colistin. but i'm so glad i did. it has paid big dividends. wanderlost on Tuesday 09 March 2010 - 06:15:26 oh wow, that is good news! Maybe I will try it - is it on/off 28 days like colistin and TOBI? I really like my 28 off days!! chatterbox on Tuesday 09 March 2010 - 00:05:11 Laura, sorry to hear you got your last free month today... I actually just started the EAP last month and now can't get it anymore. LOL. Jumped through all the hoops to get it for 28 days. Oh well. I'm sure glad its approved for everyone. Anyone know how much this monster is gonna cost us/insurance? catboogie on Monday 08 March 2010 - 20:51:59 er, that should have been can't really. catboogie on Monday 08 March 2010 - 20:50:54 i think it's the same as with other inhaled abx - the concentrations when inhaled are so large that technically you can really get resistant to it. i would use it shannon! inhaled abx have really helped me avoid needing IVs. Piper on Monday 08 March 2010 - 20:17:06 shannon, they're different compounds. i specificlly asked about this and was told that resistance to aztreonam IV wouldn't nec. translate to resistance to the neb. ask your doc to be sure, but i was told that by both CF and tx. wanderlost on Monday 08 March 2010 - 18:36:49 Piper, let me know,m that would be awesome! I'm debating the azli - aztreonam is one of the few abx I am still susceptible to, so I am not sure if I want to use it as a neb or keep it as my go-to IV catboogie on Monday 08 March 2010 - 16:17:38 got my last free month of Azli today... i can't complain; it was a good ride. Piper on Monday 08 March 2010 - 10:50:32 shannon, i know that the "eflow/altera" and the "eflow/trio" use the same AC adapter...so if you're getting an azli script you can get a new free power cord. let me check and see if i'm required to return one of my eflows when the EAP ends -- if not i can probably send you one of mine if it will save you $110! wanderlost on Monday 08 March 2010 - 07:52:12 anyone know where I can get an AC adapter to fit my eflow? I lost mine and FoundationCare charges $110 for a replacement, but batteries areexpensive too! Sevenstars on Sunday 07 March 2010 - 21:22:47 *points to my bleeds thread* speaking of bleeds. I haven't had one of these suckers in a while. they suck sonia! NoExcuses on Sunday 07 March 2010 - 20:34:30 Feel free to PM me if you want to vent. or start a thread. I feel ya. Bleeds are so frustarting and then not working out / doing meds on top of it is just down right terrible. hang in there! chatterbox on Sunday 07 March 2010 - 19:48:50 thanks, everyone for the support on the bleed. Amazingly, today all day its just been "little bleeds" and its driving me insane cause I really need to get to the gym while on these IVs to get my lungs as "clear" as possible. Amy, thanks for the support. I know you've struggled with the bleeds too... This part is just still fairly new to me. Interesting you should mention birth control as I've been taking high dose megace for appetite stimulant for a couple weeks and that stops your period. I did stop all CPT and pulmo and hts for a day, yes. Then, today I just did them cause I couldn't handle not doing them... I felt so tight. My nurse ok'd this as long as I slowly eased back into things. As for supplements, I only take the source CF vit and acidopholus. Sorry to take up so much space on the chat box. Guess I should have started a thread on this. You guys are great though... Thanks for the support. froggy on Sunday 07 March 2010 - 18:58:23 Everyone thinks I'm a Jessica, which I can understand, but they ALWAYS spell my name wrong. Its JessI!! Transplantmommy on Sunday 07 March 2010 - 16:09:29 Ummm Kara, you did have the CF voice when I talked to you. But, the only time I have talked to you is when you were in the hospital and sick, so I don't know if you normally have it or not. Sevenstars on Sunday 07 March 2010 - 14:29:01 I don't know why everyone wants to call me sondra. Not just sondra either, it's like sooooooooooooooonnnnnnnndra? Paper, ha, ok you win. Piper on Sunday 07 March 2010 - 13:36:51 lol shannon. people never get what i'm saying when i tell them my name either. half the time they repeat back "paper?" i chalk it up to a combo of my CF voice and their surprise over the name "piper" in general. but i mean come on really, paper?! mom2lillian on Sunday 07 March 2010 - 09:18:33 another thing on the bleeds, are you taking any supplements? bittyhorse23 on Sunday 07 March 2010 - 08:18:38 Nope Kara you don't have the raspy voice but you do sound young!!!! BTW I know I am not Patti LOL RageCade on Sunday 07 March 2010 - 04:30:16 God bless us all. NoExcuses on Sunday 07 March 2010 - 00:35:45 ugh i am so sorry to hear about your bleed. that is my pet peeve to end all CF pet peeve's!!!! I'm sure you're already stopping all CPT, pulmozyme and HTS AND exercise for 24 hrs until the bleeding stops. Several things have worked for me: #1 Randomly brainstorming about triggers. I didn't realize my lungs were as sensitive as they are. Turns out cooking fish (i rarely cook because my oven gives off a lot of smoke) and doing my nails induces a bleed for me #2 Controlling allergies. Environmental controls, etc #3 IV's always help me get the inflammation down to get the bleeds to stop #4 Birth control pills that stop your period (Mirena IUD or Seasonale) Take care. I know how unbelievably frustrating this is! Sunflower on Sunday 07 March 2010 - 00:33:45 sorry to hear about the bleed Chatterbox hope you feel better soon. I don't think I sound like a CFer on the phone right Patti? chatterbox on Saturday 06 March 2010 - 22:38:00 Urgh... another lung bleed tonight... this time after a brief, slow walk with the dogs. Any suggestions how to get them to stop? I NEED to start exercising and keep up with my CPT, but nurse doesn't want me to if still having bleeds. Grrr... How's a girl gonna get better sitting on the couch worrying about a bleed?!?! mom2lillian on Saturday 06 March 2010 - 19:26:27 Patti I almost forgot we talked on the phone, so do I have it ? Transplantmommy on Saturday 06 March 2010 - 19:14:42 I have met many CFers in person and talked to some on the phone. I think there was only one who I thought didn't have the CF voice, and no, it's not someone who I thought was a faker. NoExcuses on Saturday 06 March 2010 - 18:04:33 i meant to say "many" not man below. sorry