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NoExcuses Kalydeco approved! http://www.cff.org/aboutCFFoundation/NewsEvents/1-31-FDA-Approves-Kalydeco.cfm


Rosielee CF in the news:
http://www.dailymail.co.uk/health/article-2093771/Teenager-given-days-live-life-saving-lung-transplant-spending-10-YEARS-hospital-planning-funeral.html


2005CFmom Jennifer, my husband has a bronchiectasis diagnosis and he uses pulmozyme. He was tested for CF the test came up negative. I think his doctor felt his was a very special circumstance and wanted him to be on pulmozyme.


JennifersHope I know 99.9 percent of the people on here have CF dx, but does the people on here that don't have CF but just bronciactesis inhale Pulmozyme? I was on it for years, and taken off of it when I was undiagnosed, now they are trying to get me back on it and I don't think I am going to get approved, anyone have any luck with that?


TexasDex Please bear with us, some site features may be unavailable while we attempt to upgrade to the latest version of the forum software.


catboogie I am blind. Thank you, Amanda. :)


Mandagment catboogie, go to the general forum, at the very top, there is a 'how to" thread with a orange circle next to it. Our very own Seven made it.


catboogie can someone tell me how to post a photo on the forum?


Rosielee I know, I am aware of the vast amount of mutations out there, but over here, the hospital and private clinics only test for 50 that are most common in medditerranean people. In the UK it is the same, so I'm gonna have to kinda trust them, because I have no other option. Thank you very much for letting me know though, I do appreciate it, but I have no other option. Thanks again :)


NoExcuses @Rosielee be careful about testing for just 50 mutations. We have someone on this site who wasn't tested for all known CF mutations (there are over 1000) and she ended up having a child with CF because he husband's mutation wasn't picked up on the small screening.

NoExcuses on Tuesday 31 January 2012 - 11:25:18 Kalydeco approved! http://www.cff.org/aboutCFFoundation/NewsEvents/1-31-FDA-Approves-Kalydeco.cfm Rosielee on Tuesday 31 January 2012 - 07:41:44 CF in the news: http://www.dailymail.co.uk/health/article-2093771/Teenager-given-days-live-life-saving-lung-transplant-spending-10-YEARS-hospital-planning-funeral.html 2005CFmom on Monday 30 January 2012 - 22:23:06 Jennifer, my husband has a bronchiectasis diagnosis and he uses pulmozyme. He was tested for CF the test came up negative. I think his doctor felt his was a very special circumstance and wanted him to be on pulmozyme. JennifersHope on Monday 30 January 2012 - 21:53:07 I know 99.9 percent of the people on here have CF dx, but does the people on here that don't have CF but just bronciactesis inhale Pulmozyme? I was on it for years, and taken off of it when I was undiagnosed, now they are trying to get me back on it and I don't think I am going to get approved, anyone have any luck with that? TexasDex on Sunday 29 January 2012 - 22:26:44 Please bear with us, some site features may be unavailable while we attempt to upgrade to the latest version of the forum software. catboogie on Saturday 28 January 2012 - 12:04:55 I am blind. Thank you, Amanda. Mandagment on Friday 27 January 2012 - 11:21:06 catboogie, go to the general forum, at the very top, there is a 'how to" thread with a orange circle next to it. Our very own Seven made it. catboogie on Thursday 26 January 2012 - 21:44:44 can someone tell me how to post a photo on the forum? Rosielee on Thursday 26 January 2012 - 01:10:52 I know, I am aware of the vast amount of mutations out there, but over here, the hospital and private clinics only test for 50 that are most common in medditerranean people. In the UK it is the same, so I'm gonna have to kinda trust them, because I have no other option. Thank you very much for letting me know though, I do appreciate it, but I have no other option. Thanks again NoExcuses on Wednesday 25 January 2012 - 14:17:55 @Rosielee be careful about testing for just 50 mutations. We have someone on this site who wasn't tested for all known CF mutations (there are over 1000) and she ended up having a child with CF because he husband's mutation wasn't picked up on the small screening. Rosielee on Wednesday 25 January 2012 - 09:34:03 Getting a port on 9th Feb if my blood tests come back ok Rosielee on Wednesday 25 January 2012 - 01:18:03 NoExcuses - 50 mutations. I was going to have it done at the hospital but they were taking forever, so I got it done privately; and both private and hospital test for the same 50. NoExcuses on Tuesday 24 January 2012 - 15:22:20 Rosielee - how many mutations was he tested for? CowTown on Tuesday 24 January 2012 - 12:28:37 No problem. You're welcome. Rosielee on Tuesday 24 January 2012 - 08:27:05 Hey Cowtown, thanks for the reply:) Rosielee on Tuesday 24 January 2012 - 06:52:12 More good news!!! Just got my husbands screening test results......drum roll.....he is not a carrier!!!!!!!!!! CowTown on Tuesday 24 January 2012 - 06:43:50 Rosie, I just posted a link for you in your vest thread. emilykg on Tuesday 24 January 2012 - 05:26:04 i think i use the full vest and it came directly from hill rom. Rosielee on Tuesday 24 January 2012 - 02:13:42 You guys who use the hill rom vest.... Did you get the minnesota vest,the chest vest.the full vest or the wrap vest? And where did you buy the product from? Rosielee on Tuesday 24 January 2012 - 02:10:16 Ah ok, thanks Tara! tara on Monday 23 January 2012 - 13:40:14 Rosie, I'm assuming that verbiage means you have two copies of the ∆F508 gene. If that is the case, then yes, both of your parents had one ∆F508 gene to pass onto you. Rosielee on Monday 23 January 2012 - 02:05:50 Hey guys.... I have just been looking throught some old paperwork from hospitals etc.. and found a letter saying that my genotype is '' DF508 through DF508'' Can anyone tell me if that sounds right? I've usualy seen pples mutations written differently like maybe DF508/DF505...And does that mean that both my parents had the same mutation?? Rosielee on Monday 23 January 2012 - 01:19:01 Well that sucks; I am not gonna ask about anyone elses blog then... Thanks bitty and Kris Kris on Friday 20 January 2012 - 18:20:29 Aw - Jenn! And, Rosielee - congrats on the vest!! I hope it helps you! bittyhorse23 on Friday 20 January 2012 - 13:29:22 That was Jenn <3 she has been gone almost 3 years. Rosielee on Friday 20 January 2012 - 08:15:13 Hey guys, I've been reading random bits of peoples blogs from the list of blogs given in this site. I noticed that 65 Roses in Bloom (feed) has not posted since 2009.. is that a bad sign? I hate to think the worst but I would just like to know. Anyone? x bittyhorse23 on Thursday 19 January 2012 - 14:52:11 congrats and good luck with it!!! Rosielee on Thursday 19 January 2012 - 02:07:28 Thanks guys Juliet on Tuesday 17 January 2012 - 20:12:41 Yay Rosielee! emilykg on Tuesday 17 January 2012 - 15:38:51 that is awesome news!!! thanks for sharing!