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Thank you for all of these responses -- I had a long talk with my doctor yesterday and it turns out I have only cultured myco 2 times since 2009 (with many negatives between). My doc follows the guidelines of National Jewish as well as the CF Foundation recommendations and he said that they...

Thank you for all of these responses -- I had a long talk with my doctor yesterday and it turns out I have only cultured myco 2 times since 2009 (with many negatives between). My doc follows the guidelines of National Jewish as well as the CF Foundation recommendations and he said that they...

Thank you all for your repsponses! Joni I will write back to your PM later tonight -- in the middle of work <img src="i/expressions/face-icon-small-smile.gif" border="0"> I found out that I have actually only cultured this twice - once in 2009 and once in Feb of this year. For those who have...

Thank you all for your repsponses! Joni I will write back to your PM later tonight -- in the middle of work <img src="i/expressions/face-icon-small-smile.gif" border="0"> I found out that I have actually only cultured this twice - once in 2009 and once in Feb of this year. For those who have...

I've culturued m abscessus 3 times in the past 4 years or so. I have a repeat embolization next week for hemoptysis and my doc thinks that ifthe bleedingcomes back quickly we may need to consider treating the NTM. I got my senstivities back from the Feb culture that grew it and there are only a...

I've culturued m abscessus 3 times in the past 4 years or so. I have a repeat embolization next week for hemoptysis and my doc thinks that ifthe bleedingcomes back quickly we may need to consider treating the NTM. I got my senstivities back from the Feb culture that grew it and there are only a...

One more thing -- reading Cindy's post made me realize I hadn't shared how my exercise has been going. First I should say that I have been running continuously (with breaks for lung bleeds and child births) for about 15 years now. I do between 5-7 miles most days. Usually I will be good for...

One more thing -- reading Cindy's post made me realize I hadn't shared how my exercise has been going. First I should say that I have been running continuously (with breaks for lung bleeds and child births) for about 15 years now. I do between 5-7 miles most days. Usually I will be good for...

How incredible! Words cannot describe all that this must mean for you and Sam and Ella!

How incredible! Words cannot describe all that this must mean for you and Sam and Ella!

Cindy, Your last comment is something that I have noticed too -- MUCH more throat-clearing. It's like the mucus just comes out of nowhere (or at least without alot of coughing). I remember the same thing about 10 years ago (when my CF began to become more of an issue). I would do alot of...

Cindy, Your last comment is something that I have noticed too -- MUCH more throat-clearing. It's like the mucus just comes out of nowhere (or at least without alot of coughing). I remember the same thing about 10 years ago (when my CF began to become more of an issue). I would do alot of...

I am DF508 and 2184delA. I wanted to try Kalydeco for a number of reasons, most of which have been expressed by others on this forum. I called my ins abouta month ago and they offered coverage witha $45 co-pay. I then convinced my physcian to allow me to give it a go. He said that we should...

I am DF508 and 2184delA. I wanted to try Kalydeco for a number of reasons, most of which have been expressed by others on this forum. I called my ins abouta month ago and they offered coverage witha $45 co-pay. I then convinced my physcian to allow me to give it a go. He said that we should...

Thanks Becki and and Rebecca (Becky II?) <img src="i/expressions/face-icon-small-smile.gif" border="0"> I definitely think inflammation plays into my bleeds -- some combination of: CF (duh) + hormones + inflammation + infection = bleed I totally agree Becki that not knowing the when/where...

Thanks Becki and and Rebecca (Becky II?) <img src="i/expressions/face-icon-small-smile.gif" border="0"> I definitely think inflammation plays into my bleeds -- some combination of: CF (duh) + hormones + inflammation + infection = bleed I totally agree Becki that not knowing the when/where...

Greg - It's funny how "you're not alone!" is one of the most encouraging phrases to me right now. (also, love the video in your signature) I too gave up caffeine (so long skinny sugar-free mocha... i loved you so)... and I've recently cut out processed foods, especially the "white stuff"...

Greg - It's funny how "you're not alone!" is one of the most encouraging phrases to me right now. (also, love the video in your signature) I too gave up caffeine (so long skinny sugar-free mocha... i loved you so)... and I've recently cut out processed foods, especially the "white stuff"...

I have a similar theory about pulmozyme so I've only taken it intermittently the past year or so. I have however been doing HTS... I'm wondering if that's contributing. My PFTs are holding steady (still around 100%) and I've been on oral abx for two weeks (since my last bleed) so my sputum...

I have a similar theory about pulmozyme so I've only taken it intermittently the past year or so. I have however been doing HTS... I'm wondering if that's contributing. My PFTs are holding steady (still around 100%) and I've been on oral abx for two weeks (since my last bleed) so my sputum...