Motivational CF Workout Video
My wife and I came across this song and made it her motivational workout song to keep going with her treatments and exercise when its hard. We put together this CF awareness music video showing treatments and PT workouts while she was in the hospital. We posted it on youtube a few days ago and have had an overwhelming support of over 45,000 views. We thought it might be an encouragement to some of you to keep on fighting! Check it out here: http://youtu.be/FJw4NytwRNw (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - February 10, 2015 Category: Respiratory Medicine Authors: thefreylife Tags: Exercise & Fitness Source Type: forums

More Promising News
From CF Roundtable: Trials for CF Patients Homozygous DeltaF508 Now Enrolling! http://www.cfroundtable.com/2015/02/...armaceuticals/ (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - February 9, 2015 Category: Respiratory Medicine Authors: stephen Tags: DNA and Mutations Source Type: forums

How to find out classifications for Mutation D36N.
Can someone please help me understand how to find out classification for a particular mutation. Some one I know has D36N which looks like a rare mis sense mutation. But want to know what class this belongs to and if Kalydeco off label works for this. Any help appreciated. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - February 9, 2015 Category: Respiratory Medicine Authors: Mallika Tags: DNA and Mutations Source Type: forums

question on mutations
my daughter is in the process of multiple sweat test for a diagnosis and just had her blood work done today. I have a thread in newly diagnosed on everything that is going on with her. I guess Im mainly here to ask about gene mutation. from what I have read online about cystic fibrosis is the gene has to come from each parent. first question: if the parent has the gene but no signs/diagnosis of CF is their gene mutated also? second question: with CF if my daughter comes back with a mutated gene, that means she got the gene from us her parents so does that mean we got the gene from our parents?? my daughters uncle is ...
Source: Cystic Fibrosis Newly Diagnosed Forum - February 7, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

question on mutatuon
my daughter is in the process of multiple sweat test for a diagnosis and just had her blood work done today. I have a thread in newly diagnosed on everything that is going on with her. I guess Im mainly here to ask about gene mutation. from what I have read online about cystic fibrosis is the gene has to come from each parent. first question: if the parent has the gene but no signs/diagnosis of CF is their gene mutated also? second question: with CF if my daughter comes back with a mutated gene, that means she got the gene from us her parents so does that mean we got the gene from our parents?? my daughters uncle is go...
Source: Cystic Fibrosis DNA and Mutations Forum - February 7, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: DNA and Mutations Source Type: forums

CFTR modulation for those with ONE copy of DDF508?
Does anyone have info on cftr modulation drugs for people that carry only one copy of the DDF508 mutation, and another of..something else? My other mutation is a nonsense mutation. Are any clinical trials going on for those of us in this boat? Or is there any research on Kalydeco combined with other drugs for the patients with one ddf508? Thanks! (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - February 6, 2015 Category: Respiratory Medicine Authors: sasha Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

New remote maternal monitoring system - Sense4Baby,Europe
New system has launching for maternity purpose.Recently Mobile interoperability leader AirStrip and Telenatal launched "Sense4Baby" wireless fetal monitoring system.It is launched in 13 European countries.It is used to perform remote maternal and fetal monitoring including for high-risk pregnancies.It already received clearance from the US Food and Drug Administration by medical professionals. Source: (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - February 6, 2015 Category: Respiratory Medicine Authors: emilymainzer Tags: Pregnancy Source Type: forums

Sinus Surgery in 4 Year Old- Looking for Information
Hi everyone! My son is 4 years old (DDF508) and it looks like sinus surgery might be happenning in the next few months. From Sept-December he was on sick plan almost non stop (3 weeks to get rid of the illness, 1 week off, repeat)-- no huge illnesses but a very insistent cough that kept coming back. He also had sinusitis that whole time as well. He's been healthy since the end of December after a round of bactrim, luckily, but they had him do a CT scan to get a better idea of why he had a hard time staying healthy. Not surprisingly the CT scan showed his sinuses completely blocked up with mucus. They said he's too young to...
Source: Cystic Fibrosis Families Forum - February 5, 2015 Category: Respiratory Medicine Authors: CCyr Tags: Families Source Type: forums

Locket to benefit CF research
Support Cystic Fibrosis Research. A portion of the proceeds from the sale of these lockets will be donated to the Cystic Fibrosis Foundation. Stainless steel locket, pictured charms: love., purple ribbon, rose, and your choice of one initial and one birthstone. Also includes pictured beads/rhinestones. Comes with free chain. After you buy, send us a message at littlebearlockets@gmail.com with your initial & birthstone choices. $30 with free shipping - Buy at this link: https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=N2UYEVBKUYRL6 Other lockets available at www.facebook.com/littlebearlockets ...
Source: Cystic Fibrosis Community Initiatives Forum - February 5, 2015 Category: Respiratory Medicine Authors: littlebearlockets Tags: Community Initiatives Source Type: forums

Atypical CF? Mild? Or maybe not?
Does anyone have of know what could possibly be synptoms of atypical or mild CF? My oldest son, who is about to be 7, has for all his life had repeats respitory infections. He has severe bronchitis at least two to three times a year, and always has a nasal infection. My other 4 never catch it either. He also has chronic constapation that he has had since a baby. It has gotten to the point where he has tears that bleed. He's also has really bad tooth decay, and has needed lots of cavities filled. Our pediatrician doesn't seem to be too concerned. My son was never tested for CF as a newborn because they didn't donthe testing...
Source: Cystic Fibrosis Families Forum - February 5, 2015 Category: Respiratory Medicine Authors: GertA~mom~of~5 Tags: Families Source Type: forums

homage to my beloved son died after 28 years of fight
https://www.youtube.com/watch?v=Ord9...ture=autoshare (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - February 4, 2015 Category: Respiratory Medicine Authors: jpt Tags: Families Source Type: forums

Was it hard leaving home?
Have many people here moved away from their parents, when going to college or just growing up? How did you find the experience, what did you find difficult about it? (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - February 4, 2015 Category: Respiratory Medicine Authors: daver14 Tags: Teenagers and Young People Source Type: forums

R117h
My son is almost 3 and was found to have the mutant R117H 7t/9t in his newborn screen (kansas does the most common 40). We did a sweat test at 3-4wks old and it was negative. Since then we have struggled acid reflux as a baby and ongoing diarrhea. And frequently episodes of croup as well as him throwing up mucus. He snores as an infant. I do feel like he tastes salty now. At least compared to his sister's. After reading up on this particular mutation I wasn't sure if it would be worth pushing for full DNA testing to see if he has a rarer gene. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - February 2, 2015 Category: Respiratory Medicine Authors: aphillips Tags: Families Source Type: forums

Help with Sinuses. Recommendations needed to break up sinus junk!
Hi guys, Does anyone have GOOD recommendations on how to break up sinus mucus/junk? Here is my situation.. I've had 4 sinus surgeries now, 2 clean outs and 2 drilling, and my sinuses STILL get blocked! When I say blocked, what I'm talking about is I literally have sinus pressure headaches every day, some days ibuprofen, tylenol, mucinex, and sudafed dont even take care of it. I do sinus rinses 2-3 times a day using distilled water, essential oils, 1 tablespoon of pickling salt, and .5 tablespoon of baking soda. I've used essential oils on outside of skin to help relieve pain and pressure but nothing majorly helps. I occ...
Source: Cystic Fibrosis Alternative Medicine Forum - January 30, 2015 Category: Respiratory Medicine Authors: TheSaltyOne Tags: Alternative Medicine Source Type: forums

struggling for answers
So last week I posted a thread on everything going on with my daughter. Long story short we had one sweat test done, came back elevated/positive for CF. Pulmonary doctor sent us to a CF center had another sweat test done. They actually did 2 different types yesterday. Results came back borderline/positive with these 2 test. Her pulmonary doctor told me I need to stop worrying he doesn't feel she has CF he is done testing. Told me he doesn't know what's wrong and we should just go on about our life as she just has a cough!!! 😠😠😠 any ways I guess I really like to know other parents input on what I should think. I by...
Source: Cystic Fibrosis Newly Diagnosed Forum - January 29, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

Stomach distension
Hi everybody. This is my first post and I just have a quick question. No matter what I do (I always take my enzymes and everything and exercise a ton) my stomach sticks out (like I look pregnant). It's awful looking and I hate it and I was wondering if anyone knew the cause of this or any tricks to help it (I don't even know if it's a CF problem). Thanks in advance! (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - January 28, 2015 Category: Respiratory Medicine Authors: rosieg414 Tags: Teenagers and Young People Source Type: forums

Transplant Survivor
Hey guys, Would like to introduce myself, my name is Tom, I'm 34 years old this year and had a transplant on the 08/16/2011. I do a lot of talks and presentations to parents with children with CF etc If anyone has any questions or would like some advice please feel free to contact me. You can also visit this page to see a little more of my story: http://www.pozible.com/project/188562 (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - January 27, 2015 Category: Respiratory Medicine Authors: Tommyrose Tags: Transplants Source Type: forums

Mutation Database
Afternoon - I was wondering if anyone knew of an updated mutation database? The CFTR 2 website hasn't been updated since April 2012...that's almost 3 years ago! I posted this question on a facebook group, but thought I would try here. My daughter has a rare mutation w/ varying consequences and only 4 people in that database with her exact pair. There should be more updated information over a 3 year time period, especially with the newborn screening process. Hoping to find it. I'm just...desperate for more information I guess. Thanks, in advanced (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - January 26, 2015 Category: Respiratory Medicine Authors: lauryn.tubes Tags: DNA and Mutations Source Type: forums

Throat cultures
I was wondering when your primary care doctor (Not your CF doctor) cultures your throat, let's say for Strep, do they ONLY look for the strep bacteria? Or if you had something else growing would it usually pop up on the culture? I was wondering if it was possible to miss other bacteria, if they only look for one specific type. Thank you. (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - January 26, 2015 Category: Respiratory Medicine Authors: princesskinzy Tags: Teenagers and Young People Source Type: forums

More lung scarring
I got chest x rays and the tech let me see. I noticed more lung scarring, although, I was a tad confused with everything because it didn't look a whole like my last chest X-ray. But from what I saw, I had a lot more lung scarring. What does this mean? What do I need to do to prevent further scarring and damage? Any way to fix what has been done, any what so ever, even if its small???? I'm scared to hear the results which will take till Tuesday or so. (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - January 23, 2015 Category: Respiratory Medicine Authors: Enzo2311 Tags: Exercise & Fitness Source Type: forums

nebulizer
Any body have any ideas on how to give my 21 month old her nebulizer treatment without fight? She was good first few days now she screams hits, gets so bad she start coughing so bad 😢 I've tried letting her play with her tablet, letting her "be a big girl and hold it" tried bribing her with gummies. Gave the treatment to doc mcstuffins and Sofia even me n her daddy. Nothing. She screams like she is scared 😢 (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - January 23, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

Question for quantity of defecation
Hello everyone, My daughter, nearly 5 years old, were defecating once daily, but since last moth she began to do it once in 2 or 3 days. But she does not have any stomach aches or other sympthoms,also she does not have any difficulty to defecate. Is that something that i should be doubtful? Is it a matter of pancreatic insufficiency which will cause an ileus? Any experiences please?? Thanks a lot (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - January 22, 2015 Category: Respiratory Medicine Authors: kguben Tags: Families Source Type: forums

new need opinions
Let me start from the beginning.Last December my daughter was diagnosed with malabsorpation. She was 10lbs at 7 months old. We seen a gastric specialist. Changed diet etc. She gained weight and doctors were happy. When she turned a year old in may we discovered she is lactose intolerant. It progressively got worse until 3 months ago. The middle of October my daughter formed a nasty cough and runny nose. Doctors told me it was viral.for a month my daughter would cough so bad at night it would make her sick, keep her awake. She would scream in her sleep. (Not night terrors) finally I got fed up. My daughter was suffering. I ...
Source: Cystic Fibrosis Newly Diagnosed Forum - January 21, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

Exercise as a treatment
I am 20 and feel like I have tried everything my doctors have asked of me. The vest has been a problem for me. I absolutely hate the vest, I hate feeling restricted, I hate sitting still, I hate the way I felt during the treatment. Now I understand that there are benefits of the vest, I do. However, I think we all have that one thing we just really hate, mine just happens to be a vest. Sure I will swallow 100 pills (just not ADEK vitamins, I will not even negotiate doing this med), I will eat extra food, but I will fight you on the vest. I have always been active, involved in different sports. Gymnastics, cheer leading, tr...
Source: Cystic Fibrosis Exercise and Fitness Forum - January 20, 2015 Category: Respiratory Medicine Authors: SaltyPrincess Tags: Exercise & Fitness Source Type: forums

Test For The "Normal' CFTR Gene?
For quite a while I had been wondering why genetic testing for CF did not involve looking for the known “normal” CFTR gene instead of looking for one of the many known mutations. This seems like it should be much simpler. It should also have the benefit of not missing a diagnosis because a patient’s mutation(s) had not been identified yet. I was going to pose the question here, thinking someone like LittleLab4CF might have the answer. Instead I asked the Cystic Fibrosis Foundation and this was their reply: Hi ---, Thank you for your message and for including some information about yourself. We apologize for the ...
Source: Cystic Fibrosis DNA and Mutations Forum - January 18, 2015 Category: Respiratory Medicine Authors: stephen Tags: DNA and Mutations Source Type: forums

MCAT practice questions
by goldstandard_mcat (Posted Sun Jan 18, 2015 9:29 am)Embryonic mesoderm in humans develops into which of the following structures?A. Liver and pancreas B. BrainC. Lining of the respiratory tractD. Skeleton ANSWER: DThe mesoderm develops into muscle and connective tissue which includes blood and bone (skeleton!), as well as circulatory, reproductive and excretory organs. The ectoderm produces the epidermis and the nervous system including the brain. The endoderm will become the epithelial lining of the respiratory tract, and the digestive tract including the glands of the accessory organs (i.e. the liver and pancreas). The...
Source: Med Student Guide - January 18, 2015 Category: Universities & Medical Training Source Type: forums

My Facebook rant to all those people who annoy me about Cystic Fibrosis
To those of you who don't know what Cystic Fibrosis is, here's the definition from the CDC: "Cystic fibrosis (CF) is a chronic, progressive, and frequently fatal genetic (inherited) disease of the body’s mucus glands. CF primarily affects the respiratory and digestive systems in children and young adults. The sweat glands and the reproductive system are also usually involved. On the average, individuals with CF have a lifespan of approximately 30 years. CF-like disease has been known for over two centuries. The name CF of the pancreas, was first applied to the disease in 1938." Hugest pet peeve is when people a...
Source: Cystic Fibrosis Teenagers and Young People Forum - January 13, 2015 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

1471delA and DeltaF508
Anyone with 1471delA mutations ? (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - January 11, 2015 Category: Respiratory Medicine Authors: Kinga J Mears Tags: DNA and Mutations Source Type: forums

Making exercise a habit
This NYTimes mini article is about making exercise a habit. In the comment section that follows the article, there are all sorts of interesting and inspirational ideas. I think people with CF tend to develop tremendous discipline because of their treatment regimens, so a lot of the talk of making a commitment and following through might seem basic. But I still think this article/the comments give good ideas for how different people to find the right activity or right approach for making exercise a habit (...realizing that at the lower levels of lung function, activities of daily living ARE exercise). http://well.blogs.n...
Source: Cystic Fibrosis Exercise and Fitness Forum - January 11, 2015 Category: Respiratory Medicine Authors: Melissa75 Tags: Exercise & Fitness Source Type: forums

Mixing with other CFers.. thoughts and opinions?
Just wondering how people feel about mixing with other poeple with CF. I have a lot of CF friends,, one that lives just down the road from me and we meet up all the time and hang out. I don't care about the infection risks,, and neither does he.. (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - January 11, 2015 Category: Respiratory Medicine Authors: xxlilmissmorrisseyxx Tags: Teenagers and Young People Source Type: forums

Z1 Auto - New sleep therapy solution, HDM
One of the medical device firm HDM (Human Design Medical) introduced a new sleep therapy solution Z1 Auto. It is going to customizes therapy for each person or patient individual by monitoring pressure requirements thousands of times per night.It also responds automatically changes in breathing patterns and delivers maximum comfort. Source: (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - January 8, 2015 Category: Respiratory Medicine Authors: emilymainzer Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Healthcare science (cardiac, respiratory and sleep physiology)
Forum: Life Sciences Posted By: ClaireMcc39 Post Time: 06-01-2015 at 23:55 (Source: The Student Room)
Source: The Student Room - January 7, 2015 Category: Universities & Medical Training Source Type: forums

Relocating for Transplant
After being rejected by Mass General (MGH) my son (26 homozygous for DF508 and colonized with NTM that is not sensitive to macrolides) we are now at Duke hoping they will accept him. Duke seems much more aggressive than MGH. If they list him (please, please, please...) we will have to relocate for a period of time. I am very daunted by this. Does anyone have experience with the relocation? How did you and your caregiver manage? Thanks for any insight. (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - January 6, 2015 Category: Respiratory Medicine Authors: donin Tags: Transplants Source Type: forums

Anyone on here with lung AND then Kidney tx?
Please share if you have any experience w this. (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - January 5, 2015 Category: Respiratory Medicine Authors: musclemania70 Tags: Transplants Source Type: forums

Salty Kisses--is it really an indicator?
I've read that it can go either way--that some people with CF taste salty, while others don't. What has been your experience when it comes to salty forehead kisses? Today I was holding my 4 month old, and she got slightly sweaty from sleeping against my chest. I kissed her forehead and licked my lips, and they tasted salty (I do this often, it's not the first time I've "checked" her saltiness this way). But then I started thinking about it, and it's a pretty normal thing for sweat to taste salty...right? When you're working up a sweat and it drips in your mouth, it usually tastes salty...at least in my exper...
Source: Cystic Fibrosis Families Forum - January 5, 2015 Category: Respiratory Medicine Authors: Mama2Five Tags: Families Source Type: forums

124del23bp aka c.-9_14del23 anybody out there?
Does anybody have this rare mutation? (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - January 4, 2015 Category: Respiratory Medicine Authors: ccsalema Tags: DNA and Mutations Source Type: forums

International Conference on Pediatric Chronic Diseases, Disability &Human Development
International Conference on Pediatric Chronic Diseases, Disability and Human Development will be held in Jerusalem on 20-23 January, 2015. I just wanted to share this with anyone who might be interested in attending or who might know someone that would like to go. It sounds quite interesting! http://www.pedchron.com/ (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - January 3, 2015 Category: Respiratory Medicine Authors: JustaCFmom Tags: Families Source Type: forums

REGISTER NOW FOR NEW TELECLASS: Winning with CF
: Tools, Tips, and Tacticsfor Raising Healthier Kids™ Dear Parents and Guardians ofKids with CF, Wouldn't it be nice to knowabout the parenting potholes in the road of life with cystic fibrosis so youcan avoid them? A new parentingteleclass (by phone on Sunday evenings) starts on January 18 which will help youalong the way. Discover how to: ·Motivate children to make wise choicesabout food and medication. ·Put an end to power struggles, arguing,whining, and complaining. ·Promote responsibility without nagging,lecturing, yelling, or bribing. ·Recognize and avoid common parentingtraps. &mi...
Source: Cystic Fibrosis Parenting Forum - January 3, 2015 Category: Respiratory Medicine Authors: LisaGreene Tags: Parenting with Foster Cline, MD and Lisa Greene Source Type: forums

REGISTER NOW FOR NEW PARENTING TELECLASS: Winning with CF
REGISTER NOW FOR NEW TELECLASS: Winning with CF: Tools, Tips, and Tactics for Raising Healthier Kids™ Dear Parents and Guardians of Kids with CF, Wouldn't it be nice to know about the parenting potholes in the road of life with cystic fibrosis so you can avoid them? A new parenting teleclass (by phone on Sunday evenings) starts on January 18 which will help you along the way. Discover how to: Motivate children to make wise choices about food and medication.Put an end to power struggles, arguing, whining, and complaining.Promote responsibility without nagging, lecturing, yelling, or bribing.Recognize and avoid common p...
Source: Cystic Fibrosis Newly Diagnosed Forum - January 3, 2015 Category: Respiratory Medicine Authors: LisaGreene Tags: Newly Diagnosed Source Type: forums

REGISTER NOW FOR NEW PARENTING TELECLASS: Winning with CF
REGISTER NOW FOR NEW TELECLASS: Winning with CF: Tools, Tips, and Tactics for Raising Healthier Kids™ Dear Parents and Guardians ofKids with CF, Wouldn't it be nice to knowabout the parenting potholes in the road of life with cystic fibrosis so youcan avoid them? A new parentingteleclass (by phone on Sunday evenings) starts on January 18 which will help youalong the way. Discover how to: ·Motivate children to make wise choicesabout food and medication. ·Put an end to power struggles, arguing,whining, and complaining. ·Promote responsibility without nagging,lecturing, yelling, or bribing. &middo...
Source: Cystic Fibrosis Families Forum - January 3, 2015 Category: Respiratory Medicine Authors: LisaGreene Tags: Families Source Type: forums

Sweat Test after CFTR Test Negative
I am in my mid-forties and have problems with abdominal pain since I was a teenager. I have just been diagnosed with chronic pancreatitis. I had a genetic CFTR sequencing done with deletions/duplications via aCGH this past summer. The only variations that showed up in the tests were the following common variants. v470m heterozygous p1290p heterozygous t854t heterozygous g1463g heterozygous I am going to meet with the gastroenterologist next week and I was wondering if it is appropriate to ask for a chloride sweat test before ruling out cystic fibrosis as a cause. They have ruled out other causes such as alcohol, gallb...
Source: Cystic Fibrosis DNA and Mutations Forum - January 2, 2015 Category: Respiratory Medicine Authors: mkpr13 Tags: DNA and Mutations Source Type: forums

False negative sputum culture?
How often are sputum cultures false negative? My son is currently recovering from a month of sickness including sinusitis that then settled into his chest. His sputum culture was taken 3 days after he finished 10 days of amox and had just started 3 days of augmentin. His sputum was thick yellow good sample and came back normal. I suppose he could have viral pneumonia but I almost wish it was something so we could do something besides empiric therapy. He is being treated with oral antibiotic for one month now and getting better along with albuterol/pulmicort. Any insights? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - December 30, 2014 Category: Respiratory Medicine Authors: Julie7 Tags: Newly Diagnosed Source Type: forums

18 years old possible CF.
Hi, I have had sinus issues and stomach pain for a long time now and have also coughed up sputum a lot. Recently, I have been having pneumonia due to Staphylococcus Aureus (7 times now.) and hospitalized twice. My pulmonologist send me for a sweat test and it came back as likely having CF. In my most recent hospital stay, I also had a bronchoscopy which came back containing Aspergillus Fumigatus, Candida Albicans, and Staphylococcus Aureus and the doctor mentioned my lungs kinda resembled someone with CF and in my first stay I had been diagnosed with bronchiectasis. Anyone ever have a similar situation? (Source: Cystic F...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 28, 2014 Category: Respiratory Medicine Authors: Lookapancake Tags: Newly Diagnosed Source Type: forums

how much exercise is to much
I try my best and it takes all of my time to do treatments and exercise but Im tring to breathe better iwork out 5 days a week with wts. And jump rope and run on treadmill each day but starting 2days ago having streaks of blood and pain in upper chest on both sides is it cause of workin out or do I have infection do I go into hospital im upset cause I try so hard amd all I do Is to try to stay healthy or atleast breathe better and im worried its something bad I was doin ok now this sorry my emotions r goin wild im sad mad scared worried and scared I just want everyome to have there health it should b the one thing everyone...
Source: Cystic Fibrosis Exercise and Fitness Forum - December 24, 2014 Category: Respiratory Medicine Authors: cam Tags: Exercise & Fitness Source Type: forums

Christmas cough
It never fails that this time of year is hard. Too many germs. My daughter had a dry cough last week(I was hoping it would go away, trying to ignore)..She had a routine CF appointment last week. This week she started feeling more yucky, tired increase in cough(really dry and irritated cough, yesterday she had a fever:( called the clinic and sure enough she grew some staph. She's on high dose Bactrim started that yesterday...We are planning on going to visit family at the end of the week. Today her lungs had a few squeaks which cleared....Not sure if this trip will happen...Feel like we are always disappointing our family. ...
Source: Cystic Fibrosis Families Forum - December 23, 2014 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums

i1366T
So when doing a search for this specific mutation, I have come across threads that are really old and members are no longer active here. Does anyone have this mutation (i1366t) or know someone who does? Would love to connect. Thanks! (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - December 23, 2014 Category: Respiratory Medicine Authors: Mama2Five Tags: DNA and Mutations Source Type: forums

Are you a parent who has lost a child to CF and has another still living with CF
My DD 20 passed away on 2/08/2013, her 13 YO sis doesn't have any confidence in our CF Clinic bc of mistakes made. Other clinics are at least 3 hours away. Any advice from parents/ siblings on how to encourage 13 YO to continue treatments ? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - December 22, 2014 Category: Respiratory Medicine Authors: heather1 Tags: Families Source Type: forums

Social crowdfunding
Dear all, Indiegogo, next to Kickstarter the most known crowdfunding site, launched a new initiative: IndieGogo Life. It's a quick and easy way to organise crowdfunding for yourself (according to their mission). Coming from Europe, I doube its use but nevertheless... I gave it a shot for my lil fellow. A (Source: Cystic Fibrosis Payment Assistance Resources Forum)
Source: Cystic Fibrosis Payment Assistance Resources Forum - December 20, 2014 Category: Respiratory Medicine Authors: Arphy Tags: Payment Assistance Resources Source Type: forums

CF Limbo-Update on immunodeficiency
My 11 year old son has been in limbo for 5 years now. I've posted here before but I have new information. Stomach pain started at age 7. Chronic sinusitis and bronchitis. Cultured stap and h flu so far. PI diagnosed at age 8 via pancreatic stim test. Enzymes treated for 8 months with improvement until age 8 when acute event of partial SBO and acute pancreatitis landing him in hospital for one month. He is treated at Boston Children's hospital via the CF center. Conflicting opinions so enzymes were removed. Currently he is 9th percentile for height with decent BMI. DNA sequencing done 5 years ago finding 2 copies of M47...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 19, 2014 Category: Respiratory Medicine Authors: Julie7 Tags: Newly Diagnosed Source Type: forums

What does your CF Clinic say re Exercise
I'm cross posting in case some folks look only at forums and not for latest posts: I'm wondering what different CF tell patients re exercise. Obviously it is good, but do your Centers: 1) Give specifics of what types to do and how long, like they do for nutrition (eat so many calories a day), so say exercise 20 minutes per day, jogging or stairmaster? 2) Do they ever tell you not to exercise because of weight loss and a need to preserve weight? 3) Does this change as the kids get older?? Thanks (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - December 18, 2014 Category: Respiratory Medicine Authors: Aboveallislove Tags: Exercise & Fitness Source Type: forums