back to upmc
Im headed back to hospital in Pittsburgh after just getting out two months ago my lung function dropped 15% and really hard to breathe I hope they get me fixed this time I think this is the hardest year i have had in my life Im losing hope in getting any better its just been one decline after the next and now hard to walk to bathroom without being short of breath im just not ready for this im sorry bein so negative but I just cant see a way for it to get better I need to accept it I guess but its hard to know where it eventually goes thank u for this forum to let me vent and to everyone with cf make sure u make most of hap...
Source: Cystic Fibrosis Adults Forum - October 10, 2015 Category: Respiratory Medicine Authors: cam Tags: Adults Source Type: forums

Vertex Conference Live Now--triple combo gets up to 75% function
I'm in tears watching the slides. The 3 drugs combo gets in vitro CFTR function to 75% function. Orkambi only to 25%. Kalydeco...that miracle for 551...only got CFTR function to 50%. And for heterozygotes to almost 50%, which again is what Kalydeco did for 551! vrtx.com has link if you want to watch, listen (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 10, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

A RespirTech Incourage System - For Sale - Northern New Jersey
Back in 2005 I was diagnosed with Plastic Bronchitis and given a respirtech incourage system to help with pt. From the beginning it has made me feel sick when using therefore I have only used it a few times. I would like for someone who could really use it to have the benefits of the machine instead of it sitting in my closet. I do want to sell it but at a fraction of the cost. Interested in all reasonable offers. Or if anyone has any advance on how to go about Back in 2005 I was diagnosed with Plastic Bronchitis and given a respirtech incourage system to help with pt. From the beginning it has made me feel sick ...
Source: Cystic Fibrosis Adults Forum - October 8, 2015 Category: Respiratory Medicine Authors: jkleiser87 Tags: Adults Source Type: forums

links to live updates for NACFC?
I they broadcast some of the sessions, but anyone know whose posting updates/slides/summarizes live of the NACFC?? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 8, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Second generation correctors + df508 heteros updates
Just released: http://investors.vrtx.com/releasedet...leaseID=935806 Second generation correctors in healthy volunteers next month. 2016 in trials with triple combo for both ddf508 and heteros df508!!! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 8, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Venting
Hello everyone. I started this new school program which is 40 hours a week and 20 hours in driving and homework= total 60 hours. I am exhausted and am waking up at 5am every day. Last time my pfts were 76 percent and I could breath well. My pfts must be down about 5 percent because Im to the point where Im struggling to walk up a slight hill with a back pack. I don't even want to put food in my stomach because the extra weight is making it even more difficult to breath. Ive been coughing up blood as well. In the 30 years of me being alive, I have never struggled like this to breath. I have no choice to keep pushing forward...
Source: Cystic Fibrosis Adults Forum - October 8, 2015 Category: Respiratory Medicine Authors: kmhbeauty Tags: Adults Source Type: forums

Residual Functions Mutations going to be on label for Kalydeco
Okay,I'm trying to do 10 things and maybe I'm not reading this right, but I think Vertex has just submitted sNDA for RESIDUAL FUNCTION for Kalydeco. http://investors.vrtx.com/releasedet...leaseID=935666 Autumn: YOUR'S IS LISTED!!! (based on your profile!!) Off label now!!! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 7, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Hip Replacement
I'm headed down this road to a joint replacement. Has anyone on this site had one? There is NO information avail anywhere on this subject. I'm praying to get this done under a spinal, but I doubt that will happen. Thoughts? I'm 51, female, FEV1 45, DDF508, retired. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 7, 2015 Category: Respiratory Medicine Authors: benthyr123 Tags: Adults Source Type: forums

Vanderbilt Pulmonary clinic in Tennesse anyone use them
I am thinking seriously about switching clinics. I can never get my drs to call back or communicate with me after I leave their office.It will be a 5 hr drive though so I need it to be worth it. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 7, 2015 Category: Respiratory Medicine Authors: regina65 Tags: Adults Source Type: forums

I need your help!
Hi everyone, I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it. I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has...
Source: Cystic Fibrosis Adults Forum - October 7, 2015 Category: Respiratory Medicine Authors: sheilaaa14191 Tags: Adults Source Type: forums

Which is the best stethoscope for medical students?
by stethoscopeguide (Posted Wed Oct 07, 2015 12:41 am)I'm a medical student and will start studying cardiology and respiratory systems next year ... any help p.s please write the name of specific type of stethoscope. (Source: Med Student Guide)
Source: Med Student Guide - October 7, 2015 Category: Universities & Medical Training Source Type: forums

North America cf conference starts tomorrow
https://arc.nacfconference.org/cff/live/14 Some live sessions on line (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 6, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

scared for my future
Hi, I'm 19 years old and I was diagnosed with cf when I was 7. I generally don't talk about my cf but every few months or so I usually go on Google and read about other people with cf. The reason I decided to post today is because I am extremely scared for myself. I don't take my medicine. Not because I decided I don't want to or don't have the time, just because I just don't feel like it. Some days I feel like "chrissy, you have to take your meds or one day you will regret it" and I'll take them. But that only occurs about once a month. Even now I'm telling myself I need to take my meds but I know my future sel...
Source: Cystic Fibrosis Adults Forum - October 6, 2015 Category: Respiratory Medicine Authors: Chrissy Callaway Tags: Adults Source Type: forums

Orkambi drug interactions that were not listed
Anyone have a interaction with Orkambi that a was not listed in their interactions list. If so what is it? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 6, 2015 Category: Respiratory Medicine Authors: regina65 Tags: Adults Source Type: forums