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

Double Transplant for CF?
I just received my packet for my transplant testing and was reading through the material. I will be going to Cleveland Clinic. While my lung functions are still in the mid 40's I'm curious as to what I've been reading. I know I won't be listed as a critical person (my doctors wanted me to get on the list so I'm there in case I get really sick and they start to fall again). In the packet it said CF patients usually get a double transplant. I was just curious if this was the case for everyone or have any of you only gotten a single transplant. I would think it would vary per patient, but it sounds like at Cleveland Clinic th...
Source: Cystic Fibrosis Transplants Forum - November 22, 2015 Category: Respiratory Medicine Authors: kenna2 Tags: Transplants 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

zythromax long term?
Hi. No diagnosis yet for my 8 yr old daughter. Just had more blood work done today. Waiting on results of PCD panel. Depending on results, will see CF doc in WI or head to indy or cincy. So, daughter was sick recently. Xray showed probable partial lung collapse and possible pneumonia again. Trying to get sputum sample from her. Pulm wants her on zythromax MWF all winter. I don't know what dose but pharmacy double checking before dispensing b/c high dose. I guess this is used as preventative for inflammation. Anyone heard of this? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - November 21, 2015 Category: Respiratory Medicine Authors: mom2girls Tags: Newly Diagnosed 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!
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

NSAIDs inhibit ovulation
I think this is worth posting in the Pregnancy forum, as people with CF are often put on a regimen of Ibuprofen. It was not one of the three NSAIDs tested, but it's perhaps relevant nonetheless, especially at the CF dose. And even for CFers not trying to conceive, this may help understand your cycle and it's relationship to your meds (as well as things like weight, stress, and infection). http://www.medscape.com/viewarticle/846552 "The women were assigned to one of four treatment regimens: diclofenac 100 mg/day, naproxen 500 mg twice daily, etoricoxib 90 mg/day, or placebo.... 'All control patients on placebo ovulat...
Source: Cystic Fibrosis Pregnancy Forum - November 17, 2015 Category: Respiratory Medicine Authors: Melissa75 Tags: Pregnancy 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

Please help!!!
i HAVE A 14 YEAR OLD SON THAT HAS HAD HEALTH PROBLEMS HIS WHOLE LIFE. HE HAD RSV WHEN HE WAS A FEW WEEKS OLD, FAILURE TO THRIVE AT A COUPLE MONTHS OLD AND PNEUMONIA EVERY WINTER FROM AGE ONE UNTIL ABOUT 11. WHEN HE WAS 4 WE NOTICED HE WOULD WHEEZE AND STRUGGLE TO BREATH WHILE WATCHING TV WHICH WE THOUGHT WAS WEIRD BUT WOULD ALWAYS SELFCORRECT IN A FEW SHORT MINS. AFTER A FEW MONTHS WE NOTICED THAT HE WOULD STRUGGLE TO BREATH AND THEN WOULD END UP IN THE BATHROOM WITH DIARRHEA.....EVERY SINGLE EPISODE!!!! IT STARTED OUT HAPPENING ONCE A MONTH AND PROGRESSED INTO 2 OR 3 TIMES A WEEK. WE TOOK HIM TO MULTIPLE DRS AND HOSPITALS...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 14, 2015 Category: Respiratory Medicine Authors: kadesmom Tags: Newly Diagnosed 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

Smartvest SQL by Electromed inc. for sale (machine and cord only)
Hi, I have Smartvest SQL for sale. Works great, it has 84 hours of use. By Electromed inc. Please email me with offer. Thanks Email: Urkidn@sbcglobal.net Attached Images IMG_0894.jpg (83.8 KB) IMG_0897.jpg (86.9 KB) IMG_0899.jpg (85.9 KB) (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - November 11, 2015 Category: Respiratory Medicine Authors: Bill Eismin Tags: Airway Clearance Techniques 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

body image
our 15 yr old girl is obssessed with thinking she is fat. she is right about the size the doctor wants her to be. she does get a slightly puffy stomach after she eats. the orkambi hasn't helped because she hates eating food with fat in it. she doesn't care about whether it is a healthy fat. we have gone round and round over her treatments the last few weeks. any suggestions? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - November 9, 2015 Category: Respiratory Medicine Authors: trghpu1994 Tags: Families 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

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 28, 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 21, 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 16, 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