CF Foundation attendance policy
Below is a snippet from the CF foundations page regarding indoor events attendance policy. "To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time." I'm a huge supporter of the foundation and its mission, but as someone with CF, I find this policy not only demeaning and insulting, but discriminatory. We are adults, and capable of making decisions about the risks we choose to take in life. If we want to smoke, drink, or live on an island surrounded only by p...
Source: Cystic Fibrosis Adults Forum - December 17, 2015 Category: Respiratory Medicine Authors: Radies Tags: Adults Source Type: forums

Possibility to prevent meconium ileus while pregnant
Wanted to share this information for those expecting with CF prenatal diagnosis or possibility. It explains a theory and some research that DHA and GSH may help prevent meconium ileus. Obviously not conclusive but DHA is pretty common and you can get scripted prenatal vitmins that have a DHA pill with each vitamin. I was on the vitamin/DHA prescription for probably six months before conceiving and throughout pregnancy and personally think it might have prevent DS from having meconium ileus given that he had DIOS before age 2 (which is basically meconium ileus after birth), and has always had extensive GI issues. http://...
Source: Cystic Fibrosis Adults Forum - December 14, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Why was my post deleted?
Hi, I posted about a research opportunity in Cincinnati, and now my post is gone. Can you tell me why it was removed? Andrea 35 w CF (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 14, 2015 Category: Respiratory Medicine Authors: Andrea315 Tags: Adults Source Type: forums

Afflovest?
Just wondering if anyone has used the Afflovest? Is there any significant differences between the effectiveness of that versus the Hill-Rom? My doctor won't prescribe it for me since he has read it doesn't work as well as the Hill-Rom, but I need something portable for business trips. Flutter/Aerobika/ACBT is not effective for me without the help of an "external" form of therapy as well. Thanks for any advice. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 11, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums

Pancreatic Sufficient and Kalydeco
Hello, Well by some miracle (namely our saintly CF doc) my older son got Kalydeco off label despite only having one known CFTR mutation. He starts tomorrow. I was wondering if anyone else like him (Pancreatic Sufficient) has taken Kalydeco? If so, have you found that eating certain foods with it make it more effective? My son does not have a problem keeping on weight (he is on the chubby side) but he does have intestinal issues when he has a high carb, low fiber diet. He has been doing well with a low Glycemic Index diet when he complies with it (when he doesn't he is on the toilet a lot). But I was wondering what kind of...
Source: Cystic Fibrosis Adults Forum - December 11, 2015 Category: Respiratory Medicine Authors: fel Tags: Adults Source Type: forums

Port infections--probiotics may cause
Had quarterly CF appointment a week ago and after reviewing DS's meds which included Culturelle, the dietitian asked if DS had a port. I said no and she explained at the recent CF conference they discussed CFers getting port infections from adding probiotic powder into the port (if I understood correctly). So if you or your little one has a port and uses probiotics you might want to discuss with clinic. fwiw (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 10, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Cayston's Horrible Packaging
cayston.jpg I've never liked cayston's packaging, but this is new, and seems to be worse than ever! they give no email address on their website, i'm not going to call them, and i'm also not going to send them a letter through snail mail. I just wanted to rant!! If anyone has any special connections to the cayston people, feel free to show them this. Tell them that i didnt throw those first five away, but that i'm gonna hafta go buy a tiny pair of needle-nose pliers before i can open them! (slightly joking, but not really) And you only hafta make the mistake once (or in my case, like... 5 times) of using a knife to pry th...
Source: Cystic Fibrosis Adults Forum - December 5, 2015 Category: Respiratory Medicine Authors: DjFunkyFife Tags: Adults Source Type: forums

Moving to another state
My husband and I are considering moving from nj to sc. I have some concerns about the move now that i have been diagnosed with cf. I am worried about changing health insurance. Will insurance from a new ins company cover my cf needs or will they call it a "preexisting condition"? Will I be able to continue on kalydeco since i am currently on it off label? What are the adult cf drs like in the charleston area? I'd love to hear if anyone else has had experience with this and how it turned out for them. Thanks for your input in advance. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 4, 2015 Category: Respiratory Medicine Authors: alikat0079 Tags: Adults Source Type: forums

Support for genetic testing with negative sweat test
I know we often say you can have a negative sweat test and still have cf and have noted several here have had that happen and have recommended posters to push doctors for genetic tests when cf symptoms but negative sweat test. But it sounds like the doctors don't buy it...well in searching for something else I found this from cff.org https://www.cff.org/PDF-Archive/Diag...trics-2007.pdf Guideline 16 summarizes this point with a reference to a journal article. So those pushing for genetic testing based on symptoms this might help. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 3, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

should I push for testing?
Ok, I have never done this before, but I need some advice. A little bit of history-my husband(27) had very frequent lung infections as a child. His bedsheets always had a salt residue on them from his night sweats(which he still has). They had him tested for cf, but his results were borderline, & he was never retested. The summer before we got married(he was 20 years old), he ended up in the ER for diagnosed pleurisy. From that point on, he has had a chronic cough, & allergy symptoms that don't ever go away. Fast forward to current. He is exhausted. He can't sleep at night, & his sinus infections will not go aw...
Source: Cystic Fibrosis Adults Forum - December 2, 2015 Category: Respiratory Medicine Authors: themrsstacey Tags: Adults Source Type: forums

Singing and lung disease
http://paidpost.nytimes.com/philips/...e&action=click (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums

Giving Tuesday!
We are getting ready to launch our new site...which the HOLs agree is wonderful! At cysticfibrosis.com we have been CF Awareness for 20 years from the patients up! Through our CFTechnology.org 501 C 3 we can give away technology and we are always about education! We have been approached from clinics all over the world...needing technology and supplies. So if you are looking for a place to give today... Donate And WATCH for our new site...it will surprise you! Thank you! Salt and light, Jeanne (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums

Need ideas
I’m on the great strides advisory committee for my local CFF chapter. I have a meeting tonight and am looking for ideas to pass along. It’s been noted that most of great strides participants are families that have children with CF. There’re a lot of activities at the walk that are focused on kids, so this makes sense. Does anyone have any ideas on how to increase involvement of adults with CF? Of course, the infection control restrictions make this especially challenging. Ideas don’t have to be focused on great strides event. Any ideas to actively engage and encourage adult involvement in fundraising are welcomed. (Sou...
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: jricci Tags: Adults Source Type: forums

job
hi, i,m new to this. just a quick question, do any of you pwcf work in construction? im apprentice carpenter at the moment, but i have been told by my doctor i had to give up cos of dust. so i am wondering any of ye out there are carpenter or builder or construction worker? thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 28, 2015 Category: Respiratory Medicine Authors: Nicholas O'Halloran Tags: Adults Source Type: forums

Cayston
I have a 23 day supply of Cayston with a exp date of 3/17. If anyone wants it send me a PM. Bill (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 27, 2015 Category: Respiratory Medicine Authors: Printer Tags: Adults Source Type: forums

nasal polyps and deviated septum
I just went to the ENT Dr. on Monday because I've been having obvious signs of polyps. I can't breathe from my nose at all. It sounds like I have a cold because the polyps are blocking my airway. I've had polyps removed at least 3 or 4 times in the past 6 years. Dr. has mentioned they will always grow back even after removed. Just a matter of WHEN. Mine grow back about every one and a half to two years but this time they came back within only a year. I had surgery around this time last year. Dr. said he has the ability to remove polyps in his office but he couldn't do it with me because my nose is too narrow. He said becau...
Source: Cystic Fibrosis Adults Forum - November 27, 2015 Category: Respiratory Medicine Authors: beautifulsoul Tags: Adults Source Type: forums

anxiety about hemoptysis
Hi all, I've struggled with general anxiety off and on, so I know part of my fear is related to that. But I often have a lot of anxiety about having an episode of hemoptysis. I had my first hemoptysis while I was at work a few years ago and really freaked me out. I luckily got it under control and snuck out of work a little early without anyone really noticing anything was wrong. But I was quite shaken up by the experience, especially because I felt so alone at work by myself. Then over this past summer, I woke up in the morning to a bout of hemoptysis. I felt lucky to have been at home when it happened where my spouse wa...
Source: Cystic Fibrosis Adults Forum - November 25, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums

A New Home for CysticFibrosis.com!
We have been working hard behind the scenes creating our NEW WEBSITE! Every few years, we bring everything to new software. It is an amazing journey! 2016 is our 20th YEAR~ Here are some stats you may find surprising! Registered Users: 17,584 Forums: 28 Topics: 150, 231 Replies: 820,309 We have only kept records since 2003....so these are searchable conversations. Watch this space! Salt and Light, Jeanne (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 24, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums

ABPA + Lung infection = pulse dose of steroids + IV antibiotics..
Has anyone been on a "pulse" dose of steroid to help with antibiotics/abpa? It seemed to do some good, but holy crap was that an awful experience. The dose in the hospital made me incredibly awake and wired. I slept for maybe 3 hours each of the three nights, and then I was released shortly after the third dose to resume my antibiotics at home. It was brutal just trying to get my brain to work to get medications together and get my way home. I cultured my typical pseudomonas (and something new), with a huge drop in lung function and x-ray that showed a large portion in my large airway covered in a giant mucus pl...
Source: Cystic Fibrosis Adults Forum - November 23, 2015 Category: Respiratory Medicine Authors: Dank Tags: Adults Source Type: forums

Nebulized Colistin & Join Pain?
Hi Everybody, For those of you who nebulize colistin, have you noticed any joint or tendon pain? I neb it every other month, and I've begun to notice that 2-3 weeks into the months I'm on it I start getting pain in both my hips and shoulders. I'm wondering if it's related to the colistin. Any insight anyone? Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 21, 2015 Category: Respiratory Medicine Authors: Nervous1 Tags: Adults Source Type: forums

I'm 36!
Holy Cow! I'm 36 today, folks! PFTs 96%. STILL GOING! CF WON'T TAKE ME DOWN JUST YET! <3 (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 20, 2015 Category: Respiratory Medicine Authors: welshwitch Tags: Adults Source Type: forums

Wearing masks in public may help wearer from getting flu
For anyone who has heard of the sudden decline of CF patients after getting a mild cold or flu, some to the extent that they are now on ventilator, I believe it is imperative to wear a disposable mask in public places such as the grocery store, mall or hospital during flu season. Who cares if people look at you funny? Better to get curious glances than end up on ventilator. Our lungs are fragile and deserve protection. Advice from mayo clinic: Should I wear a flu mask to protect myself from the flu? Answers from James M. Steckelberg, M.D. It can't hurt and it might help. Some studies have shown that using a surgical mas...
Source: Cystic Fibrosis Adults Forum - November 20, 2015 Category: Respiratory Medicine Authors: ladybird Tags: Adults Source Type: forums

Working on disability - SSDI
Can anyone relate recent experience with working while on SSDI? Have you been audited by SSA as a result? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 20, 2015 Category: Respiratory Medicine Authors: ladybird Tags: Adults Source Type: forums

Fascinating back story on vertexs step into cff
http://www.bizjournals.com/boston/bl...html?ana=yahoo (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 19, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

long term linezolid
Hi, I'm new to this forum. I don't have cf, I have bronchiectasis, but I have had mycobacterium abscessus for 2 years, and intermittent pseudomonas, so many of the threads here are very relevant and useful to me. I've had various iv regimes and am currently on imepenem and tigecycline with azithromycin. I specifically want to ask for experiences people have had using linezolid. I've had it for short periods ( 4 weeks at 600 mg a day) and sense that it helps ( sensitivity is intermediate) My physician is very cautious about side effects (which I like) and he's reluctant for me to have it longer, he's particularly worried ab...
Source: Cystic Fibrosis Adults Forum - November 17, 2015 Category: Respiratory Medicine Authors: carolinen Tags: Adults Source Type: forums

the recalls we never learn about!
So a couple weeks past when getting a new delivery of drink supplement the coordinator discovered that there was a recall covering the product we had, but thankfully it wasn't the lot we had at home. From our discussion it sounded like medical supplies etc are usually handled from the suppliers and thus not published more broadly, so I went to fda.gov to request email updates of various recalls in the event. A couple days ago the following came through. This looks like it's been an issue for years and who knows what the hospitals/clinics are doing. Augh. Endoscope Washer/Disinfectors by Custom Ultrasonics: Safety Communic...
Source: Cystic Fibrosis Adults Forum - November 16, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Pseudomonas Aeruginosa Erradicated
I was wondering if anyone on this board has ever known or heard of anyone diagnosed with CF getting Pseudomonas Aeruginosa and then completely eradicating it through antibiotic treatment (verified by a specimen via bronchoscopy)? Thank you. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 16, 2015 Category: Respiratory Medicine Authors: zumiestar Tags: Adults Source Type: forums

Cystic fibrosis smartvest airway clearence vest machine
Selling 2 BRANDNEW ( Barley Used) SMARTVEST Machines Asking 7,500 a piece! OBO Comes with - Vest machine - vest ( teal, or purple) - Carrying case - hose - user manual One vest has only 65 hours on it unsure of the second *** EMAIL FOR MORE DETAILS *** I do have paypal, and am able to ship anywhere, may asking for shipping depending where you live. Email- Aprillynn2195@gmail.com US ONLY CAN TEXT 717- 404-7054 Attached Images 2.jpg (48.7 KB) 1.jpg (48.9 KB) 3.jpg (35.5 KB) 4.jpg (34.0 KB) (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 13, 2015 Category: Respiratory Medicine Authors: Aprillynn921 Tags: Adults Source Type: forums

Surviving on Disabilty
I've always been one of the "lucky ones" with mild CF. Of course things have declined over the years, but last year I was still doing well for a 36 year old with CF. In 2014 my FEV1 was hanging out in the low 70s. Then I caught a bad bug September 2014, and within 3 days I went from being healthy, to laid out in the hospital for 3 weeks, on oxygen for the first time ever, with an FEV1 of 51%. I've been struggling ever since. I had another drop and round of IV antibiotics in May, and my FEV1 now ranges from mid 50s to mid 60s. I tried to return to work afterwards, but between the exhaustion and shortness of breath...
Source: Cystic Fibrosis Adults Forum - November 12, 2015 Category: Respiratory Medicine Authors: Starfall99 Tags: Adults Source Type: forums

Interesting new clinical trial for 661/Kalydeco
Was checking to see if next generation details were at clinicaltrials.gov and didn't find but discovered this study, which I hadn't been aware of: https://clinicaltrials.gov/ct2/show/...lmonary&rank=1 It is a small study for 661/Kalydeco, not the Phase 3 for homozygotes going on now, but a Phase 2 looking at "extrapulmonary systems." Primary end point is mucociliary clearance, and secondary endpoints include (beyond FEV), change in gastrointestinal pH, change in sweat chloride, change in nasal potential difference. This is interesting to me because the FDA at the Orcambi discussed (if I recall correctly) th...
Source: Cystic Fibrosis Adults Forum - November 9, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Dumped because I have CF...
Unfortunately another relationship has ended for me because the person I was dating decided they didn't want to deal with my CF. This is the third time this has happened to me. I do understand that asking someone to take it on is a big challenge for them and I don't want to be with someone who won't be happy. However I am now beyond scared to get rejected again because of something that I can't control. I've talked to my therapist about this but I don't feel she gets it. Those of you who are married or in a relationship, what have you done to make it work? I'm beyond lost at this point. I'm healthy for the most part and I'...
Source: Cystic Fibrosis Adults Forum - November 9, 2015 Category: Respiratory Medicine Authors: kenna2 Tags: Adults Source Type: forums

How do I delete a post?
How do I delete something I posted? Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 8, 2015 Category: Respiratory Medicine Authors: JustaCFmom Tags: Adults Source Type: forums

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

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

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

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 28, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults 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

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

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

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