Depression & anxiety (a new way to cope)
Hey everyone :) Hope you all are having a good if not decent week. I can't believe it's November already! Feels great here in Cincinnati today. Unseasonably warm at 73 degrees. Wish it would stay that way. Anyway, We get a lot of posts asking about how to deal with depression & anxiety so I thought I would post this in hopes of possibly helping a few people if any. Adult coloring has become insanely popular recently. I've seen coloring books everywhere I go so I decided to give it a try. You don't even need artistic talent to color! Coloring is for everyone. It's cheap and easy. There are simple designs available as w...
Source: Cystic Fibrosis Adults Forum - November 5, 2015 Category: Respiratory Medicine Authors: beautifulsoul Tags: Adults Source Type: forums

Daughter has PCD- Primary Ciliary Dyskinesia
I recently posted a thread about my 7 year old daughter. She has symptoms of CF but very low sweat test results. One of you nice people posted about PCD- and that is exactly what the Pulmo Dr thinks she has. Everything that is written about PCD relates it to CF and says the treatment is identical and problems are similar- just caused by different disease. No wonder it was so confusing! She's have CT of lungs next week, along with bronchoscopy. We're starting the acapella device today. Saline breathing treatments. Continued treatment for asthma- although at the moment the immunologist and pulmonologist think she may not e...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 4, 2015 Category: Respiratory Medicine Authors: Janae Warren Tags: Newly Diagnosed Source Type: forums

New Sodium Chloride Clinical Trial
Anyone's child in the new clinical trial for a new sodium chloride neb treatment? DS13 has an appt next week to see if he is eligible. It only lasts 4 weeks: 2 weeks off sodium chloride, and then 2 weeks in the trial for the new med. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - November 4, 2015 Category: Respiratory Medicine Authors: scrapper1264 Tags: Families Source Type: forums

I need to find someone who did a full gene scan before 2006 to find their mutation
Someone I know needs to prove that this test was available before 2006 for their litigation against the genetic counselor who told them the father wasn't a carrier. Any replies would be deeply apprciated - either to this thread or please PM me. Thanks so much! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 4, 2015 Category: Respiratory Medicine Authors: JustaCFmom Tags: Adults Source Type: forums

terrible adhesive allergy, possible iodine allergy connection?
My daughter has terrible reactions (not just a little redness...I mean blistering, weeping) to the tegaderm and adhesives associated with the tune ups and PICC line. She also broke out all over her chest last year in what I think was an allergic reaction to the cleaning agent they used for appendectomy, possibly betadine? Iodine? Does anyone know if there is a link? Please, does anybody have any helpful advice, new products, ANY input on this? Tune up is coming, and we are nervous. Thank you for your help. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 3, 2015 Category: Respiratory Medicine Authors: beccasmama Tags: Adults Source Type: forums

What is your dream hospital?
Having CF we can't avoid going in the hospital and since we've got to be there for so long it can get old really quick. What do you envision the hospital having to make the best stay for CFs? And how does it compare to what's at your current hospital? I can't really say how things are for the CFs cause I just moved and honestly don't know. But I think what would make a great stay would be snacks, treadmill, DVD player, video game system, movies, small refrigerator, ect ..... (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 2, 2015 Category: Respiratory Medicine Authors: leothelioness34 Tags: Adults Source Type: forums

I had an idea.. fitness wearable to help CF in all ways
So I think using some software, some sensors -> specifically the newer technology out (sensors) we can make fitness bands that are specific to CF (but could help others!). And the best part is, I think if we can measure and interpret the data correctly, we can provide CF users with accurate information based on the sensors, which can help improve the quality of life (or help us predict potential failing points in our body). The technology is limited (i don't think it can predict PFTS... yet), but it's just an idea that we may be able to exploit the new sensors that are being introduced into society for our benefit as a ...
Source: Cystic Fibrosis Adults Forum - November 2, 2015 Category: Respiratory Medicine Authors: Dank Tags: Adults Source Type: forums

gene c.3140-26a
I just found out the other mutated gene that my 2 month old son has. He has the deltaF508 and gene c.3140-26a. I think this gene falls into the Class V cartegory but I am not positive. I am wondering if anyone else has experienced this combination or can help shed some light on what Class V is. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - October 30, 2015 Category: Respiratory Medicine Authors: iwuvwoo Tags: DNA and Mutations Source Type: forums

For those struggling with m abscesses
http://www.sciencedirect.com/science...52396415301109 cystemine is fda approved and available for another condition. While early on study, if nothing is working this might be worth a shot. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 30, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Vertex Conference Call
Vertex had a conference yesterday to discuss earnings. http://seekingalpha.com/article/3617...all-transcript That is the transcript. Note: This was held for investors but it is public so anyone can hear. I've been stalking for 5 years and this is how I've kept current on the drugs, but be forewarned that the focus is the financials. I only skimmed but two things I heard of note: 1) The second generation correctors are being dosed in healthy volunteers THIS WEEK! 2) Vertex noted that it spent a lot of time picking these next generation correctors which bodes well that they really can work. Vertex had originally said they wo...
Source: Cystic Fibrosis Adults Forum - October 29, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Pancreatic sufficient, but losing weight
Quick recap: My DS, 12 years old, was diagnosed with CRMS because of one mutation & one variant (DF508 & 5T/12TG) and borderline sweat tests (40/41). He has chronic constipation and wasn't gaining weight steadily on a growth curve so his Dr prescribed enzymes as a "trial" to see if they would help. He did begin to gain weight but I couldn't help but wonder if he was just catching up with a normal growth spurt or if the enzymes were actually doing something. The Dr that started him on enzymes left her practice and the new Dr agreed that we could do a little testing to see if he actually needed them or not....
Source: Cystic Fibrosis Families Forum - October 29, 2015 Category: Respiratory Medicine Authors: ByGrace Tags: Families Source Type: forums

Wwyd
So I picked up my daughter after school. She says oh I don't feel good today. Started after lunch but she said she didn't want to bother me or go to the nurse because I was at work. She said she was nauseous, had a headache and it hurt to take a deep breath. No fever. Min cough. question is; got a call to see if I could work 2 morrow(I am NOT obligated to) WWYD? This stuff comes up alot and my career suffers from it but her health comes first. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - October 29, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums

gene c.3140-26a
I just found out the other mutated gene that my 2 month old son has. He has the deltaF508 and gene c.3140-26a. I think this gene falls into the Class V cartegory but I am not positive. I am wondering if anyone else has experienced this combination or can help shed some light on what Class V is. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 29, 2015 Category: Respiratory Medicine Authors: iwuvwoo Tags: Newly Diagnosed Source Type: forums

Toothpaste brands?
So been researching toothpaste brands and wonder if anyone had any input from the dentist or CF doctor related to CF issues? For instance the ingredient triclosan which inhibits bacterial growth but some studies indicate could make resistant to bacteria? What about baking soda once (for a natural anti-bactrerial impact?) Thoughts??? Thanks in advance! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 29, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

CFTR nonsense w-1204, nonsense w-1143
Chr7: 117,267,718 G>A Pathogenic Zygosity: Homozygous dbSNP ID: rs121908764 Population Allele Frequency: 0.00% Gene Impact: CFTR NONSENSE W-1204-* NONSENSE W-1143-* Gene Impact: AC000111.6 INTRON Hello all, I'm a 42 year old male and I had all kinds of problems with my lungs all my life (Pneumonia half a dozen times, Bronchitis more times than I can count, and asthma. A few months ago I ordered an Asthma Peak Flow Meter and my air flow is much worse than it should be even when I do not have any asthma symptoms. For the past several weeks I have had Bronchitis. I didn't bother going to the doctor because this type ...
Source: Cystic Fibrosis DNA and Mutations Forum - October 28, 2015 Category: Respiratory Medicine Authors: oaktree Tags: DNA and Mutations Source Type: forums

Opinions on Florida and living with CF; Doctors, Clinics, Medicaid, etc.
My daughter is almost 18 and has CF. She has been on disability for almost a year. I am considering moving to Florida from Ohio. She is trying to decide whether or not to come. I believe the more stable weather will be a benefit to her. She has been seen at Rainbow in Cleveland her entire life. I need info on the clinics in Florida. How they stand up if a lung transplant is ever required. And insurance matters. She is currently covered under her Dad's private insurance (but not sure how long) and medicaid because of her disability. This is a scary move and decision to change providers after all this time so any info would ...
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: 65RosesMomof2 Tags: Adults Source Type: forums

Getting fat on Orkambi
Has anyone else been gaining weight like crazy on Orkambi? I know weight gain is one of the positives of Orkambi, and I was looking forward to hopefully gaining a few pounds. I have been on Orkambi for about 2 months now, and I have gained about 13 lbs. I don't want to gain any more weight! Right now it is a little funny that I am having this problem, but I may need to get myself on a diet soon! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: liveitup Tags: Adults Source Type: forums

New collaboration for gene splicing
http://investors.vrtx.com/releasedet...leaseID=938302 this is huge! I've mentioned before out crisp and gene splicing and that they are working with vertex will get t den much faster I think because vertex knows the gene aspect and has the assay to test...likely ten years out but closer and faster every day. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

How positive have the tests been?
My son is 7 weeks old. He had a sweat test two weeks ago and it came back at 81. since then, his other tests results have been as follows: Throat culture - normal pancreas - well above normal and dont need to give him the creon anymore live level - normal white blood cells - normal chest x-ray - clear all other blood levels - normal. we are waiting for them to finish the genealogy on his blood to find the other mutation and go back on wed for another sweat test. how likely is it that he doesn't have CF or is just borderline????? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 23, 2015 Category: Respiratory Medicine Authors: iwuvwoo Tags: Newly Diagnosed Source Type: forums

Hill-rom vest for sale
Yes I completely own it. It was for my son, he passed away four years ago and now I'm strong enough to start removing the things that's no longer needed. It's in good shape and works really good. It is an older model and I'm only asking $500 + s&h so that I can put a proper headstone on my son's grave. Contact me at somonemiller@gmail.com 20140507_094206.jpg20140507_094105.jpg Attached Images 20140507_094206.jpg (91.9 KB) 20140507_094105.jpg (90.0 KB) (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - October 23, 2015 Category: Respiratory Medicine Authors: Stmiller Tags: Airway Clearance Techniques Source Type: forums

Help I Need Advice ASAP!
I just moved and have been trying to get an appointment with the center in New Orleans but it's been a headache. They told me they needed a demographic page plus last clinic notes before they could give me an appointment. I called them to see if they got them in the middle of September because she said she'd call me with an appointment once she got that information. They hadn't received that info yet so I called medical records from my old center but they told me they faced the info on September 3rd so I had them fax it again. I waited and I didn't hear anything so I called Tulane back and they got the info but all they se...
Source: Cystic Fibrosis Adults Forum - October 22, 2015 Category: Respiratory Medicine Authors: leothelioness34 Tags: Adults Source Type: forums

Pilots with CF
New to the forum and was diagnosed a year and a half ago with CF at the age of 33. I used the search fuction and found only a few people who have become successful as a pilot. Does anyone have first hand knowledge of the trials and tribulations? After one year of fighting the FAA I was awarded a class three exemption on the medical. I'm currently finishing my hours and should be done in the next month or two. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 22, 2015 Category: Respiratory Medicine Authors: Dsnow1332 Tags: Adults Source Type: forums

Could it be CF in my 14 yo?
My son is 14 years old, weighs 78 lbs and is 4'10". He has had a cough for 2 years now and asthma among other things have been ruled out. He has had pneumonia twice and bronchitis once in this time. He is currently under the care of an endocrinologist because of his growth issues. He is falling farther and farther behind. His latest labs show his FSH to be very low and his LH to be low but not out of range. His vitamin D level continues to stay low despite supplements for the last year. It is currently at 21. He has always struggled with constipation and very large BM's. As an infant he had the same cough he has now t...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 22, 2015 Category: Respiratory Medicine Authors: snowborden1 Tags: Newly Diagnosed Source Type: forums

Fish oil
Do you take? What brand do you take? I do give fish oil daily to my daughter. In the past I had bought Nordic Naturals. last time I just got what was at the drug store. Thinking of going back to Nordic Naturals...What types do you use? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 21, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums

Qvar 1 or 2 a day?
So DS doctor wants to up his qvar or rather has. She gave us the choice of a higher dose 1 a day or same dose 2 a day. I asked adv and disadvantages and whether better to do 2 a day which seems intuitively like t would be better but she said it s no different. Bu what I wonder is is that a clinical test no different like the albuterol inhaler versus nebulizers which studies show no different but cfers in practice will say the nebulized version works better? Or is it truly no different? We've been doing 2 a day because I have the meds left but in the evening DS is already exhausted and bouncing off the walls as am I so I'm ...
Source: Cystic Fibrosis Adults Forum - October 20, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

IV ball options?
Hi, I was just curious, are there any of those IV balls (eclipse?) available for PA medicines? Specifically meropenem? Just wondering for next time I need IV's. I'd really like to be able to work during the day next time without much interruption, so I'm hoping there are options for the portable IV meds rather than the standard IV bag/pole. Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 20, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums

question about sweat test results
Hello everyone, my 11 week old daughter was recently diagnosed with c.f. and I had a question about the sweat test. First a little background - at 2 1/2 weeks old our ped gave us the news that our daughter's prenatal screening had found she had 2 gene mutations (the d508 one and another that only one other person has ever been diagnosed with 1331n). They then made us wait til she was 12 pounds to get the sweat test. So earlier this week we had the test done and her levels were at 102, which the doctor said was very high and definitely positive. He said that the levels don't necessarily determine how severe a person's symp...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 17, 2015 Category: Respiratory Medicine Authors: Martina Banks Tags: Newly Diagnosed Source Type: forums

Depression CF related
Hi. Just wondering how many of you or your loved ones with CF suffer from any form of depression. Years ago, I was prescribed Paxil by my CF Clinic doctor after breaking down in tears during one of my early visits. Later after seeing a mental health professional, I was described Adderall, after they diagnosed me as being ADD. They also gave me Xanax to sleep, and I was on this roller coaster of ups and downs for years, until I quit everything on my own. I still suffer from bouts of depression and it obviously affects my willingness to adhere to treatments and take car of myself, in general. Any, Do you any of you suffer an...
Source: Cystic Fibrosis Adults Forum - October 16, 2015 Category: Respiratory Medicine Authors: Rlawyer Tags: Adults Source Type: forums

Instagram
Hi, I'm new here! I love connecting with CFrs on Instagram and was wondering if anyone would want to share their username and connect with me. Mine's Chelles_xoxo (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 16, 2015 Category: Respiratory Medicine Authors: chelles07 Tags: Adults Source Type: forums

New Orleans Adult CF Center
I just recently moved to Ocean Springs, Mississippi and the closest CF center in to me is the one in New Orleans. Can anyone tell me about this center? What's the doctor like? What in patient is like also? What are the nurses like in the hospital and in clinic? If anyone could let me know anything about that center that would be so nice. Also is there anyone on here who lives in or near Ocean Springs, Mississippi? I'm new to this site so I hope I did this write. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 16, 2015 Category: Respiratory Medicine Authors: leothelioness34 Tags: Adults Source Type: forums

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