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

Bowel Movement issues
Hi everyone! So our baby is now 3.5 months and we're dealing with bowel movement issues that she's been experiencing since she was 3 weeks old. She poops only twice a week--on the third day. Her NP and dietitian have been watching it, recommending prune juice and at our last appt her dietitian wanted to introduce miralax. However, her NP was uncomfortable with that because she is so young so she encouraged me to continue trying to give her prune juice. Unfortunately, she just doesn't like it and won't take it. She had an xray last month and while there was a moderate amount of stool, there was no blockages. Since we...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 18, 2014 Category: Respiratory Medicine Authors: Mama2Five Tags: Newly Diagnosed Source Type: forums

Can TCM treat Cancer?
I wonder if TCM can cure cancer? From we all know, the medication of cancer is quite expensive and some can't afford it. While,there's an alternative medicine that is cheaper. I have found a website and they offer traditional chinese medicine in Singapore. What can you say guys? (Source: Cystic Fibrosis Alternative Medicine Forum)
Source: Cystic Fibrosis Alternative Medicine Forum - December 18, 2014 Category: Respiratory Medicine Authors: meganstar Tags: Alternative Medicine Source Type: forums

What's it like to die with CF?
this is a terrible question, but i was curious to know what its like to die with CF. what does it feel like? is it a peaceful death? i have cf btw (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - December 16, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

I really want to become CF healthy
So last time I got my FEV (I think it's called that), I scored 106%. I fear that I have decreased by a large number. My last chest x-ray I had minor lung scarring. But I really want to get healthy in terms of my lungs. I'm at a good weight (and my doctors have given me the 'go head' sign to lose, at most, 10 lb.). But when it comes to my lung health, it's not as great as I think it should be. I don't use my Pulmozyme as much as I should, and I use my inhaler a lot more than I do my Pulmozyme. I workout every other day (and if not every other day, the day after every other day). So here's what i want to know: 1. How c...
Source: Cystic Fibrosis Exercise and Fitness Forum - December 16, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Exercise & Fitness Source Type: forums

M. Abscessus and Transplant
Hello, My 26 year old son is being evaluated for transplant. Many centers will not consider him because he has m. abscessus (he is otherwise the perfect candidate). Three centers have agreed to evaluate him. He has completed the rigorous evaluation at one hospital but was rejected because his m. abscessus is not sensitive to the macrolides family of antibiotics (even though the m. abscessus is clinically controlled for him). We now have two to go (Duke and Pittsburgh). The rejection was terribly disappointing. I am wondering if anyone else has experience with being a 'difficult' transplant 'case.' Thank you for any insig...
Source: Cystic Fibrosis Transplants Forum - December 15, 2014 Category: Respiratory Medicine Authors: donin Tags: Transplants Source Type: forums

Exercise Examples an workout templates an info galour
www.exrx.net has all sorts of info concerning exercise, as for as what exercise for what bodypart, stretches an other general info thats great for all around health.Hope this helps some, I just found it an interesting site an wanted to share. (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - December 12, 2014 Category: Respiratory Medicine Authors: Ascastlat Tags: Exercise & Fitness Source Type: forums

yoga breathing
a little while back someone told me something about some type of breathing, I think associated with a certain yoga style, through which some guy has increased his lung capacity to three times what is average. For some reason I wasn't paying much attention at the time.I know capacity isn't really a problem with cf, but I also think it may help in some ways. I was wondering if anyone else knows anything about this; what style of yoga it is associated with, or if it's something completely different, and anything at all about it together with cf. (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - December 12, 2014 Category: Respiratory Medicine Authors: Ascastlat Tags: Exercise & Fitness Source Type: forums

DNA results
Well my daughter had the fecal elase (not sure on spelling, sorry) testing done, doctor at CF clinic said it came back fine, no loss of pancreatic function, so relieved!! She also had blood drawn for the Ambry full screen. We waited a little over a month till the doctor called with results. He said given her negative sweat tests and only the one known disease causing mutation he is considering her just a carrier. I was so relieved with this news I didn't think to ask what the actual results were! I called the CF clinic asking if they could fax the results of both tests to me & the receptionist stated she would have to ...
Source: Cystic Fibrosis DNA and Mutations Forum - December 11, 2014 Category: Respiratory Medicine Authors: Makmomma2 Tags: DNA and Mutations Source Type: forums

Pseudomonas and Balancing Work & Treatment
Good morning. My 8 month old daughter had a cough for 5+ weeks and the CF clinic asked us to bring her in for a check. She dx as CRMS due to her mutations (DF508 and F1052V) and is tracked by our local CF clinic. F1052V is very rare and causes CF in some, and not in others. Her lungs sounded clear so the doctor told us to start CPT 2x/day to see if that helped. Her theory was that this wouldn't hurt her and COULD possibly help her. They did a chest xray which showed bronchitis of some sort but no pneumonia and the doc said her lungs sounded perfectly clear. Well...two days later I get a phone call from the nurse. My daug...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 11, 2014 Category: Respiratory Medicine Authors: lauryn.tubes Tags: Newly Diagnosed Source Type: forums

VivienLauYW - New Development in molecular epidemiology of infectious diseases
New Development in molecular epidemiology of infectious diseases VivienLauYW What is Molecular Epidemiology? Molecular epidemiology contributes to the understanding of the pathogenesis of disease by identifying specific pathways, molecules and genes that influence the risk of developing disease, determining health and disease in families and in populations and the interplay of such molecular factors with environmental factors. What are Infectious Diseases? Infectious diseases are caused by pathogenic microorganisms, such as bacteria, viruses, parasites or fungi. The diseases can be spread, directly or indirectly, from o...
Source: New Media Medicine - December 11, 2014 Category: Universities & Medical Training Authors: VivienLauYW Tags: Cambridge Medical School Source Type: forums

Working Towards Diagnosis - Fearing CF
Hello everyone! I have a 17 month old son who I fear may have CF. He is in the process of being worked up for poor weight gain, malabsorption, and iron-deficiency anemia. Among his symptoms, include poor weight gain (he's in the 14th percentile), malabsorption (he eats like a linebacker and at 17 months old still hasn't tripled his birth weight), has increased fat in his stool, has microcytic/iron-deficient anemia despite being on the max dose by weight of iron, has a persistent, phlegmy cough (he's in daycare, had RSV at 5 months old that did not require hospitalization but has never seemed to clear this cough/cold since ...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 8, 2014 Category: Respiratory Medicine Authors: ChelseaLu Tags: Newly Diagnosed Source Type: forums

Nasal Filters - Shark Tank
I was thinking to buy for my baby with 1 year and a half a nasal filters to avoid being contaminated. Someone uses the "Defense Nasal Screens" nasal filters Shark Tank? Those filters are effective? It really works? By using, we are free of germs, virus and bacteria? It's hard to breathe with it? The airflow decreases? I know that they are selling in medium size. It can be adapted to a baby? thank you Tania (Source: Cystic Fibrosis Asthma, Allergies and Green Forum)
Source: Cystic Fibrosis Asthma, Allergies and Green Forum - December 8, 2014 Category: Respiratory Medicine Authors: taafom Tags: Asthma, Allergies and Green Source Type: forums

New Baby and speculation on CF
Good Morning, I have a few questions. My grandson has CF and he is 2 1/2. My daughter just had baby #2 and we have already started to worry and speculate about whether he will have CF also? What should we look for at this stage? He is 4 days old. I know weight, but we have no way to weigh right now till he goes to dr on Saturday. He eats great....she is breastfeeding. It's hard to tell from stool....it looks like what it should from a breastfeeding baby. We have licked him...LOL, but no salty taste. Would you necessarily taste the saltiness this soon? Any ideas would be appreciated. (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - December 5, 2014 Category: Respiratory Medicine Authors: mom25kids Tags: Pregnancy Source Type: forums

two copies of m470v (not one but two copies)
Hello, does anyone happen to have this mutation of two m470v. My 5 yr old was diagnosed at 3 for cf even though this mutation isn't suppose to be disease causing.. Famous words...I'm really tired of hearing that. Josiah my cfer has had pneumonia over a dozen times before age 3, 4 sinus surgeries, 2 picc lines hospitalitized 5 times last year, twice this year exacerbations every year �� we are now waiting for Ambry results, and as crazy as this sounds I really hope they find something. He's passed two sweat test, and he is pancreatic insufficient. He's on all the typical cf meds and treatment regiment. I was h...
Source: Cystic Fibrosis DNA and Mutations Forum - December 3, 2014 Category: Respiratory Medicine Authors: Shellee Tags: DNA and Mutations Source Type: forums

When to call?
Good morning. My daughter has been diagnosed with CRMS. She has df508 and a mutation with varying consequences f1052v. Apparently f1052v causes CF in some, but not all it's patients. So my daughter (8 months old) is tracked at a CF accredited center and has been doing well with no symptoms to date. She got a scary high fever last month and our pediatrician instructed us to take her to Children's Urgent Care. This center is affiliated with her CF doctor's and communicated with them to ensure she was being tested for everything she should be. The doctor said she had a diminished lung (meaning it didn't sound as healthy) but ...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 2, 2014 Category: Respiratory Medicine Authors: lauryn.tubes Tags: Newly Diagnosed Source Type: forums

Hill-Rom vest airway clearance system for sale
The system comes complete with carrying bag, air hoses, manuals and an adult medium vest garment, plus owner's manual. It is the 105 model, software version 1.22 and the unit has 62.3 hours of use. I have pictures available. Please contact me via email for further information. westportrivers@gmail.com (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - November 28, 2014 Category: Respiratory Medicine Authors: nb450 Tags: Airway Clearance Techniques Source Type: forums

Interval Training proven safe and beneficial for people with severe CF disease
Conclusion The present study showed that IT is an exercise training method which is safe in patients with CF who are unable to participate in SEP. IT is less time consuming than SEP (Standard Exercise Program'and patients perceived IT as less strenuous compared to constant workload. Compared to SEP, IT improved submaximal exercise capacity to a greater extent than SEP, whereas responsiveness of maximal exercise capacity was higher in the SEP. Overall this seems to indicate a specific potential for positive peripheral muscular adaptations in spite of minimal or diminishing potential of pulmonary improvement. From a practica...
Source: Cystic Fibrosis Exercise and Fitness Forum - November 25, 2014 Category: Respiratory Medicine Authors: ladybird Tags: Exercise & Fitness Source Type: forums

severe asthma
Anyone else here have severe large airway chronic asthma? Its really kicking my butt right now to the point where I can barely take any inhaled meds since I am so hyperreactive. Any suggestions? IgE is normal, neutophils quite high. FEV 58%, but O2 hanging out between 92-95, drops to 88/89 during exertion, around 90/91 for sleep. Two years ago w/only mild asthma I ran a 10K with this same FEV. Now stairs wind me badly. Please help! Prednisone helps, but only a high dose and dont want to be on it for years. Docs are suggesting low dose methyltrexate. Any experience with this, anyone? (Source: Cystic Fibrosis Asthma, All...
Source: Cystic Fibrosis Asthma, Allergies and Green Forum - November 24, 2014 Category: Respiratory Medicine Authors: imported_Momto2 Tags: Asthma, Allergies and Green Source Type: forums

502 bad gateway
I can't open some threads, for example , the one about my daughter's mutaions. When I do it says bad gateway. Does anyone know why and how to fix it? I can't read the response..need to figure out how to fix this!! (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - November 23, 2014 Category: Respiratory Medicine Authors: Jeannie85 Tags: DNA and Mutations Source Type: forums

Newly Diagnosed via Newborn Screen - Help!
Hi all, We are new here as our daughter was just diagnosed at 8 days old via her newborn screen. We are a little overwhelmed and have some questions we hope the CF community or other parents might be able to help us with. Her mutations are G551D and D1152H, anyone else out there with that combination? We have been asked to collect a stool sample and take it to the lab for testing. Turns out, this has been nearly impossible as she is exclusively breast-fed and her stool is very watery and gets absorbed by her diaper. We have tried lining her diaper with Saran wrap but the stool just runs around it and gets absorbed by the...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 21, 2014 Category: Respiratory Medicine Authors: greenjune Tags: Newly Diagnosed Source Type: forums

Halo therapy - salt room
Has anyone looked into halo therapy? I have been researching it and it looks really good! (Source: Cystic Fibrosis Alternative Medicine Forum)
Source: Cystic Fibrosis Alternative Medicine Forum - November 21, 2014 Category: Respiratory Medicine Authors: Teri Di Biase Mundt Tags: Alternative Medicine Source Type: forums

R297Q /30 years old
R297Q 30 years old anyone like me?? (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - November 20, 2014 Category: Respiratory Medicine Authors: zwi Tags: DNA and Mutations Source Type: forums

Other forms of treatment?
Does anyone do anything creative or different with their therapy and medication aside from vest and nebuliser? Those seem to be the gold standard but I'd like to know if anyone uses their own techniques (Source: Cystic Fibrosis Alternative Medicine Forum)
Source: Cystic Fibrosis Alternative Medicine Forum - November 18, 2014 Category: Respiratory Medicine Authors: daver14 Tags: Alternative Medicine Source Type: forums

symptoms of early pregnency for cf ppl???
Hi my name is Katrina, I am 20 years old I haven't had a period since August 30 and it lasted through Sept 3. I was suppose to have a period Oct 19 but my bf and I did it on the 18th so I didnt have my period. I have nausea, headache, back pain and I think implantation bleeding. I don't have sore boobs or vomiting. I was wandering if anyone else who was pregnant didn't have sore boobs or vomit.. I plan to get tested to see if I am pregnant today. Please let me know what yall think etc! (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - November 14, 2014 Category: Respiratory Medicine Authors: Kat Jewel Hoffmann Tags: Pregnancy Source Type: forums

Help with Prescription for Kalydeco off-label
Discussion on non-clinical aspects Ivacaftor increased in vitro the chloride transport of multiple mutant CFTR forms associated with a variety of protein defects and disease severity. The increase of chloride transport by ivacaftor was most pronounced in cells expressing CFTR gating mutations when compared to other types of CFTR mutations. This group included, G551D, G178R, S549N, S549R, G551S, G970R, G1244E, S1251N, S1255P and G1349D. The fold increase in chloride transport for all 10 studied gating mutation proteins was greater than 10. Ivacaftor also potentiated chloride transport, of cells carrying CFTR mutations that ...
Source: Cystic Fibrosis DNA and Mutations Forum - November 14, 2014 Category: Respiratory Medicine Authors: ladybird Tags: DNA and Mutations Source Type: forums

Desperately looking for others with delta f508 and s1235r
Would love to talk to others with my daughters gene mutations! Please get back to me either on here or by email kjmomma82@gmail.com thanks (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - November 14, 2014 Category: Respiratory Medicine Authors: Kjmomma82 at gmail.com Tags: DNA and Mutations Source Type: forums

Going to the doctor for a sweat test rcmndtn.
Im going to the doctor this week to try and get a recommendation for a cf sweat test. Im worried they may think Im crazy, but I'm so frustrated that I dont know what else to do. Since a child I have been getting sinus infections and bronchitis frequently. My doctor diagnosed me with asthma and put me on antibiotics and that worked for a while. I'm now 22 years old (female) and have started going downhill since 16. I know cystic fibrosis is usually diagnosed as a child but i was not tested at birth and I have read that some milder mutations do not.become severe until later in life. Anyway at 16 I started having severe pain ...
Source: Cystic Fibrosis Teenagers and Young People Forum - November 12, 2014 Category: Respiratory Medicine Authors: plainjane Tags: Teenagers and Young People Source Type: forums

Adults and older CF patients regarding the CF centers and getting diagnoised.
Hi everyone. I posted a long story here and being so overwhelmed my self and many questions I think I just confused things. Now just a question in regards to the CF cents. How rare is CF in adults over 50? Are most CF centers aware of the newly diagnosed older generations. Is it so rare, that even with a Positive Sweat Screening test and symptom's, (but say you have other condition's because you are older) That a CF center would be more swayed to think it is not CF. I would like to hear from the Over 50 CF.ers or ones diagnosed later in life about there story to get diagnosed.. I am in the process, of now getting a second...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 12, 2014 Category: Respiratory Medicine Authors: madmax33 Tags: Newly Diagnosed Source Type: forums

Not diagnoised yet, later in life. Need some advice 59 yrs old
Hi Everyone. Been reading and watching some post on here for some time. I have suspected CF for about 10 yrs now during my research and looking for answers to why I have been so ill. I am chronic now with many health problems and not doing well. I have had Many allergies, Chronic Asthma, Chronic Broncitus, IBS, Gastritis, IBD, Pancreatis, Spasm tic colon, colitis. (this have been the many diagnosis over the yrs. In 2010 I lost weight and went down to 80 lbs could not keep any thing in me. Had malnusorption disorder. the most frustrating thing is, to be so ill I am being so ignored by the medical community and being treate...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 11, 2014 Category: Respiratory Medicine Authors: madmax33 Tags: Newly Diagnosed Source Type: forums

Diagnostic and therapeutic dilemma
62 year old Caucasian woman with a history of  diabetes on oral hypoglycemics,active smoker; hospitalized in the recent past for congestive heart failure came in with pulseless electrical activity(PEA) arrest.Ejection fraction (EF) on recent echo done 1 week prior was 65% with mildinferolateral wall hypokinesis. She is admitted this time with respiratory failure leading to intubation in the field, followed by PEA arrest on arrival in the emergency. Resuscitated after 4-5 minutes of cardio-pulmonary resuscitation-no purposeful movements noted, but patient opens eyes spontaneously.Electrocardiogram after resuscitation a...
Source: Doc2Doc BMJ Cardiology - November 11, 2014 Category: Cardiology Authors: Heartfelt Source Type: forums

S945l
Three weeks after giving birth to my son I got a call saying he had failed his newborn screening for CF. We went to UVA about a month later for a sweat test. He tested in the "grey" area. After blood work I was told they were only able to find 1 mutation, Delta F508. We then went every 6 months for sweat test. This summer we decided to join a test group that Johns Hopkins was offereing. They were able to find his second mutation... S945L. Our doctor has never worked with anyone who has these 2 mutations. I would LOVE to talk with someone who has this. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - November 10, 2014 Category: Respiratory Medicine Authors: HeatherC123 Tags: DNA and Mutations Source Type: forums

worried about my daughter
Hi, I was wondering if I could get some help...when I was pregnant they found echogenic bowel on my 20 week ultrasound. It remained present until an ultrasound at 31 weeks where it began to "clear up". When my daughter was born she had two meconium plugs. Now when she has a bowel movement they are mucousy and still have meconium in them. She lost almost 1 lbs in the first 48 hours, but she is now thriving at a week old. Her newborn screening was normal. My doctor has contacted the CF clinic and we are waiting to see if they want us to come in for testing. I really want to push for a sweat test to make certain she...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 7, 2014 Category: Respiratory Medicine Authors: Megan Roberts Tags: Newly Diagnosed Source Type: forums

Can I have kids?
I am 20 and my bf and I want kids but not right now. I have cf and I don't know if I can have kids.. I don't know if there is a way to tell if I can or not. If anyone has any good news for me that would be great. (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - November 2, 2014 Category: Respiratory Medicine Authors: Kat Jewel Hoffmann Tags: Pregnancy Source Type: forums

Homozygous for D508, PI but...
When I hit my early 20's, I stopped having so much trouble keeping weight on! Now at 43, I havent taken any enzymes in two decades and constantly have to watch my diet and exercise every day to keep my weight from going up too high. All tests show my pancreas is kaput. My doc thinks I've colonized special bacteria to digest for me. Has this happened to anyone else? btw, no GI pain, normal stool, etc. You would never know I had such GI difficulty as a child and teen. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - November 1, 2014 Category: Respiratory Medicine Authors: imported_Momto2 Tags: DNA and Mutations Source Type: forums

Breathe Easy for a Little Girl Named Faith
This is my niece and she is the sweetest girl evvver! She was born with Cystic Fibrosis. We are trying to get her a new roof. As you can imagine the medical bills have piled up and once minuscule house repairs have become overwhelming. Mold and decay is a very scary threat for a child with her lung problems, please take the time to vote for Faith’s new roof so that she may “Breathe Easier!” She has been blessed with a wonderful mommy, who is constantly advocating on her behalf, what a great opportunity this would be for their family! Thank you for your vote and please spread the word. TEAM FAITH! Breathe easy. For ...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 31, 2014 Category: Respiratory Medicine Authors: GracefullyDaph Tags: Newly Diagnosed Source Type: forums

CF and Children
Hello, I am 25 yrs. old and I have been thinking of weather I should or should not have children. I want some input on how it is like raising children while also fighting Cystic Fibrosis. Although I definitely want children, I don't want to feel like I'm being selfish. My main concern is not having the energy or getting too sick at some point where I wont be able to care for my child as I should or would like to. My boyfriend and I have talked about it several times and he is always very supportive. He tells me that if I want children we'll make it happen even if we have to adopt, and if I decide I don't want children he ...
Source: Cystic Fibrosis Pregnancy Forum - October 31, 2014 Category: Respiratory Medicine Authors: Naydib Tags: Pregnancy Source Type: forums

Could I have CF?
I've had what has been diagnosed as horrible allergies my entire life. My nose is completely clogged 365 days a year, to the point where I basically can't breathe through it. What's worse is I have this horrible post nasal drip. It's so thick and copious that I feel like I am constantly choking. I'm coughing and sniffling literally every second of every day. Although I do exercise, I have a hard time breathing when I run. I often feel like I can't breathe deeply enough. I feel like I constantly have a sinus infection, I've had probably 2-3 a year for as long as I can remember. I've had my lung capacity tested before to see...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 30, 2014 Category: Respiratory Medicine Authors: Lannister Tags: Newly Diagnosed Source Type: forums

Which CF Care center to use??
Hi! I'm brand new here :) My name is Sarah and my 3 week old nephew was just diagnosed with CF. He was initially seen at UAB but we need to pick a center closer to home (Newnan,GA) so I wanted to see if anyone here had any experience with Emory or Scottish Rite in Atlanta. Is one better than the other for any specific reason? Any info would be helpful! Thank you! (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 28, 2014 Category: Respiratory Medicine Authors: sarahjacksonb Tags: Newly Diagnosed Source Type: forums