Mrsa
My son is 17...dd508...fev 110%...colonized with MRSA...first dx with it in 2012. He would do a round of lenezolid and not culture for 6 months or so and then BAM! out of nowhere. Unfortunately, we have been plagued with this...mess! He has not had a MRSA negative culture since the end of 2014. Now the drugs are not working as well as they previously did and he is flaring up more often. I am VERY interested in any alternative/holistic approaches to controlling this. Any ideas are appeciated. Thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: MamaHollie Tags: Adults Source Type: forums

Nasonex on back order?
I went to the pharmacy to refill my daughter's Nasonex and it is on back order until December. Wondering what you all use besides Nasonex for nasal polyps? She does her Nasonex 2 squirts once a day. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums

More next generation correctors coming
Another company, Galapagos, is moving forward with a second generation one. Slide 11 for Vertex shows 4x improvement over the combo (661/Kalydeco), while this in vitro shows a 6x improvement over Orcambi (which has equivalent cftr improvement to 661/kalydeco). So many things coming! http://seekingalpha.com/news/2831876...mbi#email_link (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Good news
My doc gave me the green light to think about pregnancy! She says my FEV1 is great and there is no reason why I couldn't have kids. Don't know if that is indeed in my future but I feel so relieved/joyful/NORMAL! Here's to joyous days, all!!!! (L)(L)(L) (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: welshwitch Tags: Adults Source Type: forums

Trying to figure out how accurate the sweat test is before tomorrow
My son is 6 months old. Since he was born something has always felt a bit "off" for lack of a better word. His stools have always been bright green with mucus, he's had a chronic cough that is consistantly getting worse, he was always crying until about a month ago, he's always breathed funny, and he is always congested. I've been to several doctors, most of whom blew me off and told me it was a milk allergy or reflux. I tried reflux meds and a total elimination diet at first for months but neither helped. Finally I found a pediatritian who listens to my concerns. She sent me to a GI specialist who didn't feel li...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 15, 2015 Category: Respiratory Medicine Authors: aleutenberg Tags: Newly Diagnosed Source Type: forums

Allergic reactions to Antibotics
Hi.. I have posted before that last Oct. a year ago this month, my grandson had a terrible reaction to the antibiotics the doctors believe it was the cefepime and possibly the vancomycin. He had steven Johnson syndrome, I cannot tell you how terrible it was for my family but most of all for Connor. He did recover and we do feel lucky because it could have been a lot worse he responded to the steroid treatment, but it took over a month for him to recover. Since that time my grandson Connor has had a reaction to 2 other antibiotics. He has a allergist that follows him, a derm specialist and his CF team. The docs told us Co...
Source: Cystic Fibrosis Families Forum - October 13, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums

New Site Coming Soon
Hi my friends! As I was reading through the threads this morning (my initial activity for the last 20 years!) I came across CFinTX question and I thought this would be a good time to reply to his question about the Pyrtze email sent out so here goes: Great Question CFinTX! Back in 1996 when I bought the domain: CysticFibrosis.com and (my partner had CF), I imagined a center for everything CF. That would include patients, caregivers, family members, partners, HCPs and Industry Leaders. We started with pretty simple message boards. The threads were entitled Patients and Families. In 2003, we got a heavy duty da...
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums

DIOS prevention options
Hi everyone, I've been struggling with intermittent DIOS now for several years. Previously I was using a cap of Miralax daily as a preventative. However, ever since I was treated with IVs over the summer, my bowels have not been the same. Now I cannot tolerate Miralax at all - I get severe gas and bloating with frequent BMs. Is there any alternative to Miralax for DIOS prevention? Thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums

Anxiety on Orkambi?
Hello all- I was wondering if anyone else on an anti-depressant or anxiety medication is experiencing anxiety or mood cycling on Orkambi? I am prescribed 10mg of escilatopram (Lexapro) for generalized anxiety, and have not had issues for years. However, I noticed within the first week that I have had extreme issues with anxiety attacks, constantly feeling nervous or jittery, and mood swings. I understand that there is a moderate interaction there, but it almost feels as if I went 'cold turkey' off my meds, and I even experienced minor brain zaps one morning. I tried doubling my dosage for one week (taking 1 20mg pill ins...
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: sheanna Tags: Adults Source Type: forums

has the system been down????
I have not seen a new email post in weeks was the system down? Also I went to 4 different sites before I found my friends... I was starting to panic Will now log on to adults to see what I have missed... (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: windex125 Tags: Adults Source Type: forums

Pertzye?
I got an email today from CysticFibrosis.com promoting this drug but I have never heard anything about it. Anybody on it or heard of it that can share more? Looks to be maybe an alternative for enzymes. I'm currently on Creon's but don't know if this would be considered an equivalent or an additive. http://www.pertzyecf.com/ Also, unrelated, this is the first time I've gotten an email like that from CF.com - do they typically promote drugs like this or is this just a new marketing tool they're trying to take advantage of? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: CF in TX Tags: Adults Source Type: forums

Super dry cough at night
Has anyone else ever had a bad dry cough at night? It doesn't wake me up. It's when I wake up to go to the bathroom. My chest is super tight and then I start coughing until I bring something up or move the junk around which is usually really thick at night... I am also 5 mths pregnant which could be some of the problem. I also have asthma to. Any suggestions on how to help would be great thanks. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 12, 2015 Category: Respiratory Medicine Authors: missmary083 Tags: Adults Source Type: forums

Orkambi works even if FEV doesn't improve
I know I'm tracking carefully what people are saying about Orkambi and specifically the FEV improvement. The Vertex conference noted one of the presentations at the NACFC which showed that there was no correlation between the FEV improvement at a specific point and reduced excerbations. In other words, even if FEV isn't improving, Orkambi is still reducing excerbations. Here's the poster presentation: http://www.vrtx.com/assets/pdfs/conf..._Poster241.pdf Something to keep in mind if you aren't seeing an FEV improvement and think it's a waste of time, money, etc. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 12, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

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 when using...
Source: Cystic Fibrosis Adults Forum - October 9, 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 self...
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

Haloterapy Opinions and Haloterapy Devices
Hi CF community This group is great and helped us a lot. I'm a parent of a recently diagnostic CF 8 year old girl. She had two positive sweat tests and we are waiting for the mutation test results. She has tried Haloterapy (Salt Rooms), and we saw good result in releasing and ticketing the mucus. In my opinion, it is one of the most efficient therapyes that she used. I'm writing you to: 1º-Know your opinion about Haloterapy. 2º-Do you know any portable Device that we can use at home? I have searched and found the following: http://www.healyourself.com.au/aroma...py-halotherapy http://www.salinetherapy.com/ h...
Source: Cystic Fibrosis Alternative Medicine Forum - October 4, 2015 Category: Respiratory Medicine Authors: Jose Coelho Tags: Alternative Medicine Source Type: forums

Have you stopped Orkambi because of side effects?
In various threads I've seen several refer to discontinuing Orkambi or dropping out of the study. I'm we could try to pull the info all together, with some of the surrounding factors to help CFers access things. So, if you discontinued or dropped out, could you respond and note: How long you were on and why you discontinued? FEV at time of starting? Antibiotics or meds you are allegic too or unable to tolerate besides Orkambi? If you have autoimmune or other issues that make meds more challenging? Thanks in advance! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 2, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Is there anything against Abscessus when Tygacil, Amikacin etc have failed?
Hi all, With some desperation, I am looking for some support and ideas on this forum. I have been hospitalized now 3 times for abscessus infection the last 8 years. The first 2 times I bounced back each time a bit after 11 and 6 months hospitalization, thanks to Tygacil which was just on the market. ANd then I stayed out of hospital for 3 years each time. After the birth of my daughter (a miracle!! Thx Gd!), I started crashing and was hospitalized 5 months ago. Unfortunately my abscessus is nowadays resistant against all commonly used drugs such clarithromycin,cefoxitin, moxifloxacin clofamicin,amikacin,meropenem and now ...
Source: Cystic Fibrosis Adults Forum - October 1, 2015 Category: Respiratory Medicine Authors: hardclubber Tags: Adults Source Type: forums

Lung Function
I am seeing so many people post about their lung function. I see that some people have a lung function of 125%. Others say they have almost perfect function at 97%. Does anyone have any information on how this works? My son in law has a lung function of 71 and is 21 years old. How does that relate to non cf lung function? Thanks for your help! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 30, 2015 Category: Respiratory Medicine Authors: knottstreet Tags: Adults Source Type: forums

Help needed with info about CF
I am putting together a video for our 15th Annual CF Valentines Gala, and was hoping to get some input from soem of you in this forum. I do not have CF, however, I am very involved with our local chapter and with various events throughout our area. Through this video, I would like to show how things have changed from the time our Gala started in 2001 to how things are now in 2015 for patients, friends, parents, grandparents, etc. What has changed for you in teh last 14 years that you feel an audience of 700 should know about? Thank you in advance for helping me out. Once I complete the video, I would love to share it w...
Source: Cystic Fibrosis Adults Forum - September 30, 2015 Category: Respiratory Medicine Authors: FriendofCF Tags: Adults Source Type: forums

Cfpaf
Yikes, I just received this email from the Cystic Fibrosis Patient Assistance Foundation. Comes as quite a surprise that they are shutting down at the end of the year. I briefly looked at the Healthwell website to check out the guidelines and see what meds they provide assisance with, but it doesn't even show CF as a covered disease. It's a little concerning, how will this Healthwell agency cover the influx of CF patients? I'm guessing somehow the CFF will be funneling money there as opposed to the CFPAF. Hmmmm.. I hoping the assistance remains the same for those of us who use it. I wonder what government regulations they ...
Source: Cystic Fibrosis Adults Forum - September 30, 2015 Category: Respiratory Medicine Authors: triples15 Tags: Adults Source Type: forums

Elastase Test--- with or without enzymes??
My son's GI ordered his first fecal elastase 1 test today. He has been on enzymes for a few years as an "experiment" to see if they would help his constipation & promote weight gain, but he's never been given a dx of either PS or PI. The GI said that we should stop the enzymes for about a week before the test so the results will be accurate. From what I've read online the enzymes won't affect the test, but I would hope that the Dr. knows what she's talking about. What have you done before collecting a sample? Should I stop giving him enzymes? Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - September 30, 2015 Category: Respiratory Medicine Authors: ByGrace Tags: Families Source Type: forums

Freebies
I have LOTS (100?) of disposable, sealed in the package, nebulizers for inhalation treatments. All have the 7 foot hose, and mouthpiece. They are mostly the acorn, generic kinds but there are some larger 10 cc nebs for things like Colistin that has a larger volume and foams some. They are the green HUDSON II (2) Updraft nebs up for free. Also, 10 boxes of 100 One Touch Ultrasoft WHITE color LANCETS for pricking your finger for a blood glucose reading. 100 sterile lancets per box. The box says: For use with all OneTouch Penlet & OneTouch UltraSoft brand automatic blood samplers from LifeScan, and most other blood samp...
Source: Cystic Fibrosis Families Forum - September 29, 2015 Category: Respiratory Medicine Authors: GoryLori Tags: Families Source Type: forums

Freebies.........
I have LOTS (100?) of disposable, sealed in the package, nebulizers for inhalation treatments. All have the 7 foot hose, and mouthpiece. They are mostly the acorn, generic kinds but there are some larger 10 cc nebs for things like Colistin that has a larger volume and foams some. They are the green HUDSON II (2) Updraft nebs..for free. Also, 10 boxes of 100 One Touch Ultrasoft WHITE color LANCETS for pricking your finger for a blood glucose reading. 100 sterile lancets per box. The box says: For use with all OneTouch Penlet & OneTouch UltraSoft brand automatic blood samplers from LifeScan, and most other blood sampli...
Source: Cystic Fibrosis Adults Forum - September 29, 2015 Category: Respiratory Medicine Authors: GoryLori Tags: Adults Source Type: forums

CF or asthama?
So, DS for a couple weeks kept clearing his throat but not really coughing more and not sick...then had a nasty coughing spell after exercising (and also I realized the house was horribly dusty). Dust, vacuumed, and upped his Xopenex to 3x a day, but that's it. Cough had gone away and after the extra dose he hasn't coughed (other than a random passing one and not harsh at all), and the throat clearing has gone almost entirely too. Is that an asthama thing? Or with CF would a cough and throat clearing go away like that with nothing but just adding a Xopenex (no vest, no antibotics, etc?) (It could just be the dust which is ...
Source: Cystic Fibrosis Adults Forum - September 28, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

daily activities for folks that have PFTs in 30's and 40's?
I was just wondering what you all do in your daily lives when your PFTs start hitting the 30-40 percentile? Mine have dropped in this area and have finally had to step away from work because I am just to exhausted, so would love to hear what daily activities you guys do if you could share. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 27, 2015 Category: Respiratory Medicine Authors: Markus Tags: Adults Source Type: forums

Obamacare and Orkambi
Hi everyone! I am turning 26 in february (I'm off parents insurance) and wanted to know if anyone is on Obamacare and can still get Orkambi? I am having a lot of success with it. Additionally, is anyone on Obamacare and getting covered for pulmozyme, enzymes, TOBI podhaler? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 25, 2015 Category: Respiratory Medicine Authors: Megw212 Tags: Adults Source Type: forums

Obamacare and Orkambi
Hi everyone! I am turning 26 in february (I'm off parents insurance) and wanted to know if anyone is on Obamacare and can still get Orkambi? I am having a lot of success with it. Additionally, is anyone on Obamacare and getting covered for pulmozyme, enzymes, TOBI podhaler? (Source: Cystic Fibrosis Payment Assistance Resources Forum)
Source: Cystic Fibrosis Payment Assistance Resources Forum - September 25, 2015 Category: Respiratory Medicine Authors: Megw212 Tags: Payment Assistance Resources Source Type: forums

CF Bowel Obstruction Study
This study focuses on cystic fibrosis patients who have complaints of bowel obstruction and constipation. The goal of this study is to see if and how osteopathic manipulative medicine will affect these patientsÂ’ bowel functions. The study is being performed through Touro University. Treatments will take place in Vallejo, CA and in Portola Valley, CA. What is osteopathic manipulative medicine? Osteopathic manipulative medicine (OMM) is a hands-on technique of moving and mobilizing tissues of the body to be able to function optimally. In this project, the techniques that will be utilized are gentle and will be ...
Source: Cystic Fibrosis Alternative Medicine Forum - September 25, 2015 Category: Respiratory Medicine Authors: Sara Modlin Tags: Alternative Medicine Source Type: forums

First step for EU access for Orcambi; 2-5 for gating for Kalydeco
http://investors.vrtx.com/releasedet...leaseID=933178 For our friends across the ocean. Only a first step, I know, but Godspeed in getting the drugs soon. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 25, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

So confused....no diagnosis...stop looking?
Looking for confirmation my 8 year old daughter doesn't have cf. Wondering what is going on. Has environmental allergies (as shown on skin tests 2x). Diagnosed with asthma 2 yrs ago due to cough...no wheeze ever. Last school year had bacterial pneumonia in Sept (x-ray at er) and bacterial pneumonia in May (2 night hosp stay). Possible pneumonia in mid June...treated but no x-ray. In past has seen GI for possible reflux and genetics b/c she didn't sweat. Sweating has slowly started and they think possible connective tissue disorder. Recurrent pneumonias have lead to numerous tests. She's been doing really well since increa...
Source: Cystic Fibrosis Newly Diagnosed Forum - September 24, 2015 Category: Respiratory Medicine Authors: mom2girls Tags: Newly Diagnosed Source Type: forums

cleaning tips
http://www.ivsolutions.com/2015/09/c...cleaning-tips/ (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 24, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums

United health care grant (helps with expenses)
I hear this on the radio today. So I thought I'ld post this. I have no affiliation with them. Thought if it could help someone it would be useful. http://www.uhccf.org/apply/learn-mor...tion-criteria/ (Source: Cystic Fibrosis Payment Assistance Resources Forum)
Source: Cystic Fibrosis Payment Assistance Resources Forum - September 23, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Payment Assistance Resources Source Type: forums

Insurance for Orkambi (GA)
Any Georgia residents on Orkambi via insurance? I am looking to sign up for Obamacare in a few months, so any experiences (bad/good) with GA carriers would be super helpful. Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 23, 2015 Category: Respiratory Medicine Authors: cmorgan Tags: Adults Source Type: forums

Achromobacter denitrificans
Hello Group I was just in the hospital for the first time in 5 years. I use to culture Pseudo but it has been gone for about 5 years. I have also cultured Achromobacter Xylosoxidans since 1992 or so. This time i cultured Achromobacter denitrificans. After some research it seems this is not a nice bug and that it is rare. I know that when I first cultured Xylosoxidans I was also told that is was very very rare. Has anybody cultured this other bug? I am wondering if it was a mistake or if maybe it has always been misidentified. I do not know but, it is weird that I did not culture Xylosoxidans at all. only the new bug and ...
Source: Cystic Fibrosis Adults Forum - September 23, 2015 Category: Respiratory Medicine Authors: aslong Tags: Adults Source Type: forums

A conversation with my non CF'er
My son is preparing to apply for college soon. He is sorting out what to write for his college essay. He has decided this year that he wants to focus on science; likely start as a Biology major. He said for his essay he wanted to write about his sister with CF; brainstorming last night. He said he is very interested in genetics because of her. He used the term "Precision Medicine".. I wanted to encourage him to write not just about his sister but about himself..That he has a level of empathy; because of her situation. I actually don't even think he has absorbed all the "emotional" stuff but is moving ...
Source: Cystic Fibrosis Families Forum - September 22, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums

Please Take A Moment To Read
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 i...
Source: Cystic Fibrosis Teenagers and Young People Forum - September 22, 2015 Category: Respiratory Medicine Authors: sheilaaa14191 Tags: Teenagers and Young People Source Type: forums