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mom2lillian anyone chatting tonight?


Andee I just called Pari and told them that mine was having the slow start up problems that were getting worse, and they overnighted me the Vios and included a return shipping sticker for the Ultra. If you live somewhere with Saturday delivery, you could have it tomorrow . I wonder what in the world is going on with the Mobilaires? I haven't checked my site in a week or so, but it has been on back order too forever!


mom2lillian my mobilaire is STILL on back order maybe I will have to trade in for one of those I think mine is sub-optimal now, will time it tonight *sigh*


Andee hey Cat- they sent me one, and it does seem to have a bit more "umph* than the Ultra II. I guess it's okay, but I don't know any definites. I do know my pft's today were the best one's in a couple of years, so from that standpoint, I guess it's working .


catboogie my ultra ii stopped working properly (AGAIN) and Pari sent me a new model...called the Vios. seems more powerful than the ultra ii but i hope it's ok to use with all our meds. anyone know?

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mom2lillian on Friday 12 March 2010 - 20:06:49 anyone chatting tonight? Andee on Friday 12 March 2010 - 10:46:19 I just called Pari and told them that mine was having the slow start up problems that were getting worse, and they overnighted me the Vios and included a return shipping sticker for the Ultra. If you live somewhere with Saturday delivery, you could have it tomorrow . I wonder what in the world is going on with the Mobilaires? I haven't checked my site in a week or so, but it has been on back order too forever! mom2lillian on Friday 12 March 2010 - 06:59:47 my mobilaire is STILL on back order maybe I will have to trade in for one of those I think mine is sub-optimal now, will time it tonight *sigh* Andee on Thursday 11 March 2010 - 21:34:35 hey Cat- they sent me one, and it does seem to have a bit more "umph* than the Ultra II. I guess it's okay, but I don't know any definites. I do know my pft's today were the best one's in a couple of years, so from that standpoint, I guess it's working . catboogie on Thursday 11 March 2010 - 19:29:44 my ultra ii stopped working properly (AGAIN) and Pari sent me a new model...called the Vios. seems more powerful than the ultra ii but i hope it's ok to use with all our meds. anyone know? mom2lillian on Thursday 11 March 2010 - 14:49:50 *expletive*add me to the bleed buddies oh and btw CF+walking in San Francisco=sux Sevenstars on Wednesday 10 March 2010 - 19:41:57 Sorry chag and Dana, I was afk for chat. No, you didn't miss anyone, my chat log was empty. Grats to rachy for getting the call (even though I don't know her) Piper on Wednesday 10 March 2010 - 13:47:26 oh wow, rachy finally got the call?! thanks for the update, meg. fyi to everyone, here's her blog: http://lungs-for-life.blogspot.com/ chatterbox on Wednesday 10 March 2010 - 13:15:29 Sending lots of good luck vibes to Rachy!!!! Yay! froggy on Wednesday 10 March 2010 - 12:54:30 Oooooh! Good luck to her on her tx! I hope all goes well and she recovers fast! meggzzie on Wednesday 10 March 2010 - 12:17:30 that's good, not goos. I have terrible typing at the moment! meggzzie on Wednesday 10 March 2010 - 12:17:02 Please send lots of goos luck vibes to my friend Rachy who is currently in theatre for her double lung transplant xx Momtana on Wednesday 10 March 2010 - 10:58:18 see you all tonight, I hope. tara on Wednesday 10 March 2010 - 00:45:39 Sorry I missed chat tonight. I was busy being poked and prodded and questioned in lock up. vitamin k- on Wednesday 10 March 2010 - 00:15:18 maybe it's just the laaaag. 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!