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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 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 a bleeder and I'm wondering how mine compare with others- what's the frequency of your bleeds? The amount? Always correlated with infection? What do you do to treat your bleeds? Unfortunately mine seem to be coming with increasing frequency and I'm wondering if that's normal. No infection...

So I heard through the local CF chapter grapevine that they are considering using pancreatic sufficiency as an indicator of the effectiveness of Kalydeco in other mutations.... I suppose this is because sufficiency (or partial sufficiency) might indicate some CFTR function. In the past my docs...

Following Amy's request for this link (<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2773991/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2773991/</a>) and subsequently reviewing it, I am wondering if any CFers with DF508 saw improvement while participating in the VX-770 trials. One...

Something I've always wondered is if drugs like vx-770 that address the underlying cause of cf will decrease hemoptysis episodes... Anyone on here have frequent hemoptysis and participate in the vx770 trials? Did you see a decrease in bleeds?

I am considering having a (preventative) embolization. I’ve been coughing up relatively small amounts of blood (~1T) every couple weeks for a few months now. I’ve done IVs, have been doing all the “right” stuff, tried continuous hormone stuff, my lung function is stable around 100%, and still...

I feel like a bit of a stalker but I've been trying to track Mallory down for a few weeks now ever since seeing her post about progesterone therapy for hemopytsis. Ive sent a personal message but she may be like me and rarely log in-- so Mallory if you see this could you check your messages <img...

I'm considering starting progesterone therapy to treat my hemoptysis (I do not cough up blood between periods or when pregnant... when progesterone levels are high). Has anyone else done this? If so, did you do the "mini pill" (progesterone only) OR progesterone therapy like what is administered...

<P>I was googling a bit this afternoon following the latest Vertex press release and came across the following -- what is this?!</P> <P> </P> <P><A href="http://www.selleckchem.com/products/VX-770.html">http://www.selleckchem.com/products/VX-770.html</A></P> <P> </P> <P> </P>

Every once in a while I like to think about all of the CF-related parts of my day/life/thoughts that I am most excited to see end should there be a cure some day. Can we post some of those? It's always fun to dream about <img src="i/expressions/face-icon-small-smile.gif" border="0"> A few of...

My family recently relocated from OKC to the Kansas City, KS area. Anyone go to a CF center in KC? Have a great doc you could recommend?

Because TOBI is class C (I think) for pregnancy, my doc and I decided I will do Cayston during my pregnancy (it is class B). It arrived yesterday in all of its glory (two boxes including the meds, new neb, baby bottle sterilizer, dish soap, containers to wash in, etc) Kind of impressive and...

I am one of the CFers that struggle with bouts of hemoptysis. I am 26 and my lung function is good (in the 90s), I run everyday, have an 18-month old son, and am in good health... BUT hemoptysis has crippled my ability to do everything I need to for my health. Blood feeds infection, bleeds...

I heard from our local CF Chapter office yesterday. They had a meeting with the National office and learned that Phase III trials for VX-770 are expected to be complete in very early 2011 and then submitted for FDA approval soon after. However, this assumes that WE PARTICIPATE!!!! There are...