P.arg75.gln
Hi, i was wondering if anyone had this mutation? I've had chronic pancreatitis and breathing problems the last 3 years. I was being treated last year at a Certfied CF Clinic. They were looking into CFRD but I only have the one mutation and then switched insurances. Thank you. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - June 15, 2015 Category: Respiratory Medicine Authors: NCkat Tags: DNA and Mutations Source Type: forums

DeltaF508 and c1521_1523 Deletion CTT. Please help!!!
My daughter has been diagnosed with these mutations but looks like second one is rare. Does anyone have any info at all??? Thanks for the help. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - June 14, 2015 Category: Respiratory Medicine Authors: Dfreitas999 Tags: DNA and Mutations Source Type: forums

Anyone using alternatives to the vest in young kids?
Hi all. We travel a lot and are looking for alternatives to the vest for our little one (3years). when it's both my husband and I travellibg its not such a problem but if I travel alone it me, two kids (twins) a stroller, 2x car seats, back pack of stuff and a 28lb compressor!!!!! Not a lot of fun! Anyway cups are a bit of a non starter as its like wrestling a small alligator and think I get more of a work out than his lungs do!!! Any thoughts greatly appreciated (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 12, 2015 Category: Respiratory Medicine Authors: lovemyboy507 Tags: Families Source Type: forums

Possible CF (input please)
Hello all. I am a 20 year old male, and was recently tested via sweat test for CF. I received the call five days ago that I did not have CF due to the results, but I am not fully confident (as online research has led me to discover that in some, albeit very few, cases, the sweat test may produce normal results despite the patient having CF). Here's why I am not fully confident: 1) I was diagnosed with asthma at a young age--however, this asthma is so mild that it has a negligible impact on my life as of now. I need to take two puffs of my albuterol inhaler MAYBE once a week, if not less than that. I do not usually need i...
Source: Cystic Fibrosis Newly Diagnosed Forum - June 11, 2015 Category: Respiratory Medicine Authors: alex852 Tags: Newly Diagnosed Source Type: forums

Support CF Foundation! Fund drive has reached over 1000 hits per day.
Hello All, This thread is for feedback about a CF Foundation fund drive that I am participating in. We have reached 1000 unique hits per day and hope with this we can make a larger donation. Users shop online like they would anywhere else, and a percent of their purchase goes to the CF Foundation. Donating does not cost you anything extra. If you are planning on buying a Father's Day present online, this is a great time to buy it and help support a good cause. http://www.ayedeals.com Please provide feedback or suggestions. Products are available from Amazon, Best Buy, Walmart, Sears, Etsy, Sears, Microsoft, Rodale, New Ba...
Source: Cystic Fibrosis Community Initiatives Forum - June 10, 2015 Category: Respiratory Medicine Authors: ayedeals Tags: Community Initiatives Source Type: forums

D579g
Someone have this cftr mutation? (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - June 7, 2015 Category: Respiratory Medicine Authors: carmartini Tags: DNA and Mutations Source Type: forums

medications while pregnant
Hey. I am 8 weeks pregnant and thankfully am feeling great. I'm a bit anxious about medication. I'm taking 500 mg of zitromax per day and am wondering Has anyone else taken zitromax throughout their pregnancy. My gp said it was fine and I trust her but just need reassurance. I am also taking vitamin d, adek, hypertonic saline. Any feedback would be really appreciated. (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - June 5, 2015 Category: Respiratory Medicine Authors: alfie Tags: Pregnancy Source Type: forums

Mom/Son with CF Have a Chance to Win- Please Vote!
Hi there, My son, with CF, now 18, had always received unhelpful nutritional advice from our CF docs. Through the years, I have found what works for him and helped him be a healthy weight (no dairy, good fats, and more). from this journey, we have developed dairy/gluten/soy free brownies packed with nutrient dense hemp that have been a huge hit and we have made it into a business, helping others with food allergies have good, healthy treats to enjoy. we are now in the running to win $100,000 from Chase. I am sure everybody out there can relate to how needed that money is. I have raised my son alone, ex-husband never paid...
Source: Cystic Fibrosis Community Initiatives Forum - June 5, 2015 Category: Respiratory Medicine Authors: Diana Blue Tags: Community Initiatives Source Type: forums

Is this the right test?
My dr ordered a genetic test it says Cystic fibrosis DNA mutation analysis with reflex to polymorphisms. Is this the appropriate test to check for milder mutations? And does it test for all the mutations? (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - May 31, 2015 Category: Respiratory Medicine Authors: Jessica Gomez Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Hi All. Throwing this out there to see if anyone can help. Still no CF diagnoise.
Hi Everyone. Well, I had a ambry Pancreatitis Genetic panel done. Any one else, with pancritis problems, Cf etc, which know of theses mutations. G576A, (likely pathogenic) And R668C. (Variant of unknown Significance) Got as far as a CRMS Diagnose. Told neither of these are CF causing. I don't get this as I am still in limbo, The two high sweat test> 84, and 90. To make this short as I always write a book here, I do have good FVC. Low DLCO. (which I think is heart related) Chronic Asthma, Chronic Sinusitis, Allergies, Chronic Bronchitis, Failure to thrive, malnusorption disorder (most all my life) Chronic Pancritis, Oste...
Source: Cystic Fibrosis DNA and Mutations Forum - May 30, 2015 Category: Respiratory Medicine Authors: madmax33 Tags: DNA and Mutations Source Type: forums

Possible cf
Hi everyone my story is a bit complicated. Im 23 years old and when I was 18 I was given a genetic test for CF and it came back negative the reason my Gastro dr ordered it was because of acid reflux, elevated lipase levels and sludge in my gallbladder which since then has been removed. Just recently my new gastro dr told me about the possibility of CF. I only have one person on my dads side that has CF no one on my moms. I don't have the typical CF symptoms just occasional unexplained shortness of breath, frequent respiratory infections severe acid reflux and persistent low vitamin d levels. My gastro dr said that I could ...
Source: Cystic Fibrosis Newly Diagnosed Forum - May 29, 2015 Category: Respiratory Medicine Authors: Jessica Gomez Tags: Newly Diagnosed Source Type: forums

DeltaF508 c.1584G>A
My husband and I are in the process of doing IVF with icsi due to we both carry the Delta F508 and he carries another copy 1584 G>A. We have 2 frozen embryos frozen that have my delta F508 and my husbands 1584G>A. I cannot find much research with this combination. Our doctor said he would not implant due to the fact it could result in symptoms in a child. Even though it has not show symptoms in my husband. We are heartbroken! Does anyone out there know or have any research with this gene combination? (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - May 29, 2015 Category: Respiratory Medicine Authors: kfortugno Tags: DNA and Mutations Source Type: forums

Kalydeco with an FEV1 of ~27% (homozygous delta-F508)
Treatment with Kalydeco on patients with the homozygous delta-F508 mutation will apparently pass FDA muster in July. My girlfriend is twenty-five and her doctor has indicated that her current baseline FEV1 is around twenty-seven percent, that this treatment is intended for those with an FEV1 of thirty-five percent or higher. Can someone elucidate what he's talking about here? I fully intend to fight tooth and nail for this treatment on its approval, but I'm scared there's something I don't know that will make this impossible. (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - May 24, 2015 Category: Respiratory Medicine Authors: Bosh Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Creatinine Help
I've been having a lot of trouble the last few years with IV meds putting a strain on my kidneys. It always seemed that no matter how much I drank, or how many liters of fluid I got, my creatinine would go up. I'd have to hold the antibiotics, and the result was a hospital stay or home IV cycle that wasn't as effective as it could have been. After my last hospital stay, I started doing research into natural ways to lower creatinine. I came across nettle leaf tea as being the best opinion. I asked my doctor if I could try it, and she said that would be fine. I couldn't find leaves to make tea, but the natural grocers had a...
Source: Cystic Fibrosis Alternative Medicine Forum - May 19, 2015 Category: Respiratory Medicine Authors: nmw0615 Tags: Alternative Medicine Source Type: forums

Vote for Tim's book...Help him win the prize...CF Awareness and a wonderful book!
Dear Jeanne, Hope all's well with you... I need your help please to win a book prize for my CF memoir ‘How have I cheated death?’ (available in paperback, e-book and audiobook)… The UK People’s Book Prize 6th Awards black-tie ceremony is on 27th May 2015 at Stationers’ Hall, London, which will be broadcast ‘live’ by SKY NEWS from 8.20 - 9pm. I need votes to help win before the 27th May to determine the Winners. Votes are carried forward from last year and those who voted before can re-vote or register and vote for the first time for my book via link below. Thanks very much if you can promote this via th...
Source: Cystic Fibrosis Community Initiatives Forum - May 19, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Community Initiatives Source Type: forums

2183aa > G or S945L
Hi Folks! I'm trying to pull some data but Google isn't being incredibly helpful.... there really isn't a place to pull this kind of data.. I'd like to know what symptoms are related to which genes... and so I think this may work out well. I think there are at least a few people on these forums with these genes. This is what I'd like to know: Which genes do you have? (please only reply if you have either 2183aa->G or S945L, thank you!) What are your major CF-related symptoms (lungs,sinuses,pancreas,other)? What medications work best for you to manage health? (pulmozyme, etc) Whats your PFT%? (Just the last result is...
Source: Cystic Fibrosis DNA and Mutations Forum - May 19, 2015 Category: Respiratory Medicine Authors: Dank Tags: DNA and Mutations Source Type: forums

Battling CF kyphosis
What are you experiences in improving structural CF related kyphosis? Have you been able to regain mobility in your thoracic spine? After a long period of malnutrition and sickness in my teens, my spine and posture were pretty bad leading into my 20's. My posture and muscular strength have improved a lot since then. Problem is my spine itself. It has the typical CF curvature combined with barrel chest which makes it seem optically worse. (Same as my sister and a lot of CF'ers my age, it seems.) My spine is pretty stubborn. Months ago I purchased a foam roller to aid muscle recovery, fight aches, pains and improve mob...
Source: Cystic Fibrosis Exercise and Fitness Forum - May 18, 2015 Category: Respiratory Medicine Authors: Twistofchaos Tags: Exercise & Fitness Source Type: forums

coming up on 5 years
Haven't posted in a while, but for those of you still waiting, keep hoping. I will be 5 years post this June and things have gone really well. I've been working fulltime, traveling and exploring new hobbies. I've also met my donor family on several occasions---which was amazing experience. (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - May 15, 2015 Category: Respiratory Medicine Authors: jfarel Tags: Transplants Source Type: forums

I am not going to sit back anymore.
Ok. My only child, my daughter Suzie, is 25 years old. She was diagnosed at 11 years old. We just learned of her mutation about a year ago. We always knew one was the Delta 508. They have finally found the other but they said no one else has it. And it does not have an easy name. I will write it as it says on her chart: 869+1 869+4 delGTAA insACATTATT I had asked all of you previously but no one really knew. I am hoping now that somebody will recognize this or maybe give me some tips? I believe that Kalydeco would change her life, and her attitude about life! She is doing her last 3 days of Cayston and is coughing so h...
Source: Cystic Fibrosis DNA and Mutations Forum - May 15, 2015 Category: Respiratory Medicine Authors: suziesmom Tags: DNA and Mutations Source Type: forums

VibraLung Review
I also wanted to share my experience with the VibraLung. I have been using it for a little over three weeks now and, without question, this device is far superior to any other instrument (The Vest, Flutter, etc.) or airway clearance method (CPT, autogenic drainage, etc.) I have tried in my thirty-three years as a cystic fibrosis patient. I have been VERY blessed with great health overall but my FEV1 started dipping in 2013. Intravenous antibiotics, intense airway treatment and exercise did little to improve my lung function and I found myself hospitalized for exacerbations frequently. My health care team attributed it to a...
Source: Cystic Fibrosis Airway Clearance Techniques Forum - May 15, 2015 Category: Respiratory Medicine Authors: CaitlinA Tags: Airway Clearance Techniques Source Type: forums

Missing School
To whoever may be reading this- I'm struggling with school. I have an endless amount of absences and my grades aren't nearly as good as they have been. I was hospitalized for the first time in February of this year. I missed about three weeks of school and ever since I haven't had the time to fully catch up on everything. After returning from the hospital, I went to see my school counselor to set me up with online school and eliminated some of the classes I was taking. Doing so only helped me only for a short time. I currently take three classes at my high school and three classes online. I just recently cultured out MAC a...
Source: Cystic Fibrosis Teenagers and Young People Forum - May 12, 2015 Category: Respiratory Medicine Authors: sheilaaa14191 Tags: Teenagers and Young People Source Type: forums

Clinical question of the week: "Arrhythmia" patient with palpitations, dyspnoea, and dark stools
A 75-year-old male with a prior history of hypertension, diabetes and treatment for “arrhythmia” presented to the emergency department complaining of palpitations and dyspnea on exertion over the last two days. The patient also reported dark stools over the last two days. No other symptoms were reported. Current medications included atenolol 50 mg qD, warfarin 5 mg qD, metformin 850 mg BiD.   The patient did not remember his last INR result, but reported no blood tests over the last two months. On examination the heart rate was 140, irregular, BP was 90/70, respiratory rate 22, SatO2: 94%. The patient ...
Source: Doc2Doc BMJ Cardiology - May 11, 2015 Category: Cardiology Authors: MBittencourt Source Type: forums

Clinical question of the week: How would you treat this patient w palpitations, dyspnoea, dark stools?
A 75-year-old male with a prior history of hypertension, diabetes and treatment for “arrhythmia” presented to the emergency department complaining of palpitations and dyspnea on exertion over the last two days. The patient also reported dark stools over the last two days. No other symptoms were reported. Current medications included atenolol 50 mg qD, warfarin 5 mg qD, metformin 850 mg BiD.   The patient did not remember his last INR result, but reported no blood tests over the last two months. On examination the heart rate was 140, irregular, BP was 90/70, respiratory rate 22, SatO2: 94%. The patient ...
Source: Doc2Doc BMJ Cardiology - May 11, 2015 Category: Cardiology Authors: MBittencourt Source Type: forums

Mother's Day
This is an interview my daughter Sarah did many years ago...with Lisa Greene. Lisa is a most amazing MOM of two children with CF! Days must be challenging for Lisa as her husband surprisingly died a few weeks ago. https://www.youtube.com/watch?v=c5hRLWgPLaM May God give her strength and peace as she continues to inspire us all! Happy Mother's Day! Salt and Light, Jeanne (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - May 10, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Families Source Type: forums

referral for CFTR
Afternoon all, had a bit of a bombshell today, after a persistant cough for 18 months which is productive I've been sent for CFTR test. Is this normal in a 27yo female? Chronic autoimmune issues for 25 years plus so not new to Drs. Can an anyone offer words of wisdom or similar?! (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - May 8, 2015 Category: Respiratory Medicine Authors: Aimee Ford-Young Tags: DNA and Mutations Source Type: forums

mental health-bad drug reaction
Hi all My son has DD508 and depression. We have just discovered that his moods went very low when he was on a certain antibiotic called Akamin (mincycline) and as soon as he came off it things started to improve. He stopped crying for no reason, being angry and argumentative all the time and wanting to end his life. It wasnt the cure for his depression and he is on antidepressants but it made a huge difference. His doctors had not come across such a reaction before,anyone heard of this happening?:confused: Mumof1 (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - May 6, 2015 Category: Respiratory Medicine Authors: mumof1 Tags: Teenagers and Young People Source Type: forums

School Field Trips ??
Hey all! My daughter with CF is in kindergarten this year. She's had a couple field trips so far and my husband has always been a chaperone. Another field trip is coming up and the teacher told me he didn't have to be a chaperone because they wouldn't be eating anything on this field trip (therefore no need for enzymes). I was just wondering how other families handle the field trips at school. Did a parent always chaperone? Is this something you included in your 504? Should I even be concerned about it? On one hand, I'd like to give other parents a chance to go, and also be able to give my girl a little independence; but ...
Source: Cystic Fibrosis Families Forum - May 4, 2015 Category: Respiratory Medicine Authors: SadiesMom Tags: Families Source Type: forums

Vibralung and Vest
I just wanted to give some advice to those who are interested in the Vibralung. I actually was able to get one this past week and I'm so thrilled. The rep said that it can be done with the vest so I figured I'd try them together. All I can say is, holy mucus batman...I knew I wouldn't sleep through the night due to all the coughing I did. I have gotten so much out it's amazing. I would highly recommend doing the together. (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - May 3, 2015 Category: Respiratory Medicine Authors: kenna2 Tags: Airway Clearance Techniques Source Type: forums

Two Kids with CF - Cross-Contamination
My son (8 months) was diagnosed at birth and his 3 year old sister was just tested and diagnosed with CF as well. Obviously we cannot keep them 6 feet apart, but we wash and sanitize as much as we can. Does anyone have experience with two CF babies? How do you handle cross-contamination concerns? I am especially worried that once they get school-aged, we'll just be passing germs back and forth constantly. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - April 29, 2015 Category: Respiratory Medicine Authors: Kirio Tags: Families Source Type: forums

3 Year Old Just Diagnosed - Help!
My son was diagnosed at birth last year. His three year old sister was recently tested and has CF as well. She has been a picky eater from birth. She is not underweight and her vitamin levels are all good, though she is severely pancreatic insufficient. She refuses to take her enzymes (the answer to everything is "no" these days) and she doesn't eat anything we can hide them in (mostly hard foods or dairy products) and she chews everything. She is, thankfully, willing to do her breathing treatments, but it's killing me that I can't get her to take her enzymes. Does anyone have any advice? Our medical team s...
Source: Cystic Fibrosis Newly Diagnosed Forum - April 29, 2015 Category: Respiratory Medicine Authors: Kirio Tags: Newly Diagnosed Source Type: forums

18 yrs transplanted lungs
I am a female age 49 yrs old . I received a double lung 18yrs ago but now my digestive tract is shot stomach muscle does not work so being fed through an NG tube, reason being I also have cirrhosis of the liver. My lungs are doing great but everthing digestive wise is shot. Is there anyone else going through this (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - April 27, 2015 Category: Respiratory Medicine Authors: cassidy96 Tags: Transplants Source Type: forums

rso/ medical marijuana
hi i am zak i am a 18yer old i was wondering if eny cf patient has used marjuana how nd what way i was thinking of taking rso wich is use to help cancer nd meny other stuff (Source: Cystic Fibrosis Alternative Medicine Forum)
Source: Cystic Fibrosis Alternative Medicine Forum - April 25, 2015 Category: Respiratory Medicine Authors: Zak Hayes Tags: Alternative Medicine Source Type: forums

Advice please-girlfriend with CF
Not sure if this is the correct place to post this, but feel free to either address it here or redirect me (with url) to the correct page and I can repost on there, thank you. I met my gf at an online dating site and after emailing and chatting for a few weeks we started going out on a few dates. On the first date she was very open and explained (briefly) that she had CFwhen I asked about her cough. At the time I honestly didn't know anything about the disease, but wanted to learn more as time went on. I did small amounts of google research and talked with a buddy who knows a lot about the disease and explained a good pa...
Source: Cystic Fibrosis Families Forum - April 25, 2015 Category: Respiratory Medicine Authors: FallingForHer Tags: Families Source Type: forums

Looking for Help/Clarification on CF
Hi, I am new here and hope this is the right place to be. My daughter is 17 months old and has a long, complicated medical history including severe reflux, aspiration, lyrangomalasia, Failure to Thrive, severe central and obstructive apnea, low muscle tone, many sinus infections, and wears orthotics to help her walk. She has been hospitalized 7 times and had surgery where they did a nissen fundoplication and G-tube at 3 months old. She also has problems with digestion (large amounts of undigested foods in stool) and has a hard time gaining weight even with the G-tube. She also has re-current infections and has never respon...
Source: Cystic Fibrosis Newly Diagnosed Forum - April 24, 2015 Category: Respiratory Medicine Authors: Kathryn Sneed Tags: Newly Diagnosed Source Type: forums

How did your decline go?
The changes in how I'm feeling overall since my last hospital stay feel drastic, however right now my numbers don't really reflect that. I'm the past usually what would happen would be I would suddenly get sick with something (cold, flu, whatever), cough a ton, get to my couch out of breath then realize it's time for a hospital stay. Get tuned up then good to go back to my usual routine. However, my last stay wasn't like that. I never really got "sick", I'm fact I was barely coughing at all besides when I really forced myself during treatments. I went in because of a really heavy sensation on my chest, and af...
Source: Cystic Fibrosis Transplants Forum - April 23, 2015 Category: Respiratory Medicine Authors: static Tags: Transplants Source Type: forums

My grandson is in the Hospital.. I am having one of those days :(
Hi.. you all may have seen my post about kids with CF reaching out to kids with CF. My grandson is 6 yrs old has CF. He is such a amazing kid and so smart. I think he knows more about his meds and schedule than I do! He has sinus issues has always has had a runny nose :) he takes zrytec and cincular plus all his other meds :0 He had a sinus infection and even with predisone and antibiotic he got worse. He was admitted to hospital Sunday for exacerbation of CF .. to me this means he cannot stop coughing! This is hard and because of a terrible reaction to antibiotics last Oct. the docs are being very cautious with what meds...
Source: Cystic Fibrosis Families Forum - April 22, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums

21 Day Nutrition Challenge
Hi everyone! I am looking for a few people to join my 21 day healthy eating accountability group. I need to lay off the junk food and get back to good, healthy eating but I need help :). There is no cost (except your groceries), no supplements, no sales pitch, no gimmicks. If you are interested, shoot me a message. I'm hoping to start in a week. (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - April 21, 2015 Category: Respiratory Medicine Authors: tesorotiffa Tags: Exercise & Fitness Source Type: forums

2nd pregnancy
Hello everyone. I hope to get a lot of replies to this. I am a proud parent of a two year non-cf little boy and I couldn't be happier. However I would love to have another baby. It took me almost two years of not being cautious to get pregnant and pregnancy was tough towards the end but I wasn't in the best health to begin with (80% lung functions and under weight only weigh 108) my question is did anyone have a harder time getting pregnant their second time or did they experience pretty much the same thing the second go around. I am currently thinking about having another child but kinda wanted to know if I should prepare...
Source: Cystic Fibrosis Pregnancy Forum - April 18, 2015 Category: Respiratory Medicine Authors: Brittani Nicole Tags: Pregnancy Source Type: forums

CF Family in need of a new kitchen
Would you be able to spread the word about our CF Family in need of a new kitchen? We are in a contest on the Rachael Ray show and we made the final three. But to win we need all of our CF friends to help. We need you to vote for us. So please go tohttp://contest.rachaelrayshow.com/am...s-your-kitchen and click to vote for The Ruberto Kitchen. You can vote multiple times – up to one vote per minute per device. Thank you all for your help. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - April 17, 2015 Category: Respiratory Medicine Authors: mom24dodd Tags: Families Source Type: forums

E coli
Hi guys. Got my sons culture results today, and the only thing that grew was e coli. They said they do not treat it. The nurse also said it probably is due to him refluxing. He is on reflux medication already. He did have a drop in his pft's at clinic, but his doctor was not overly concerned since he was coming off of (2) 14 day cyles of antibiotics pretty much back to back. I had had him to his pediatrician between antibiotics because he was having daily episodes of choking on his food, liquid, and even saliva. I asked about reflux then but he said he is being treated for it and treated for a sinus infection instead. ...
Source: Cystic Fibrosis Families Forum - April 15, 2015 Category: Respiratory Medicine Authors: jshet Tags: Families Source Type: forums

I was treated like a freak
So regulations apparently say that I must wear a mask in the cf clinic and anyone who's in contact with me must wear a full gown, mask, and gloves. Like I have the worlds first zombie plague lol its actually very depressing. Anyone else feel the same way? New regulations btw (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - April 15, 2015 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

Medical Marijuana
I told my cf doctors I use it, and they seem... Disappointed. i don't smoke it. I vaporise it or I eat it through food. Whats your thoughts and opinions about it? After they found out they even began to treat me differently. It's depressing (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - April 15, 2015 Category: Respiratory Medicine Authors: Enzo2311 Tags: Exercise & Fitness Source Type: forums

Explain how my PFTs went from 111% last month to 94% today
I'm sad and confused. How does this happen?? Last time I got my PFT was from my general doctor using some fancy handheld one I got 111% , and now at my CF clinic with their bulky computer and special nose plug and what not I scored 94%. It's depressing and confusing. explaon this to me please! the only thing that has changed since the PFT done a month (and a half) ago and now is I go to the gym 4 days a week whereas before I'd go 3 days a week. For for the past few days, it's been remarkably windy btw. Everyone here has been talking about how it's so windy and we even had a little dust storm (that was video taped and...
Source: Cystic Fibrosis Exercise and Fitness Forum - April 15, 2015 Category: Respiratory Medicine Authors: Enzo2311 Tags: Exercise & Fitness Source Type: forums

mstein just diagnosed with cystic fibrosis
Hi everyone I am a 56 yearold female and I was just diagnosed with cystic fibrosis. I am very scared. The doctor is doing gene testing on me to see how severe I have it and they did a bronchoscopy and biopsied that. The biopsy showed a bacteria in my lung so they re trying to find which bacteria it is. In the meantime I am on pulmazyme neubulizer treatment. My whle body hurts Im coughing my chest feels tight I am always tired. If there is anyone out there could you tell me your story being diagnosed as an adult and how you are coping. because Im so angry that I have this. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - April 11, 2015 Category: Respiratory Medicine Authors: mstein Tags: Newly Diagnosed Source Type: forums

Cough question
My daughter recently had an endoscopy done. Anesthesiology told me "she had more respiratory secretions than we normally see, typically we see it if someone has a cold" According to her GI doc they "suctioned a great big blob out during extubation and said she should feel some relief now" I did ask anesthesiology if they could culture any secretions they encountered, they said that is not something they do. :( She has had this chronic, productive, daily cough since this past October. Last Friday she had tubes put in both her ears d/t failing her hearing test, large amount of fluid behind her ears and 6 ...
Source: Cystic Fibrosis Newly Diagnosed Forum - April 9, 2015 Category: Respiratory Medicine Authors: Makmomma2 Tags: Newly Diagnosed Source Type: forums

g1069r
I have spent countless hours trying to find anyone with the mutation g1069r. I'm really not expecting that anyone will respond because it just seems to be incredibly rare but figured I'd post anyways just in case. I've found some mention of the mutation in a few studies and listed on some patent requests - but I'm just curious if anyone out there has any experience with this mutation. My 9 month old has one copy of df508 and one g1069r which is currently categorized as a mutation of varying consequence in the CFTR database. He has a CRMS dx currently - but I'd love to find out more! (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - April 7, 2015 Category: Respiratory Medicine Authors: emason Tags: DNA and Mutations Source Type: forums

Children's Hospital Pittsburgh CF Clinic
Hi. Was wondeing if any of your kids go to the cf clinic at children's hosp. pgh. My sons doctor unfortunately is retiring in July, and we need to choose a new doc. withen the practice. I have 2 doctors i am considering, and 1 that is a definate no. Besides being a great doctor, we need one with a great bedside manner who is super patient. My son also has autism, and appointments can be more difficult because of it. Communication is tough between my son and doctors since he doesn't really speak to to them. His current doc is very patient and creative to get my son to cooperate. The doc definetly must be soft spoken and als...
Source: Cystic Fibrosis Families Forum - April 6, 2015 Category: Respiratory Medicine Authors: jshet Tags: Families Source Type: forums

Tricare Coverage for CF Dietician?
Hello, I would greatly appreciate if any one has any recommendations or information about Tricare coverage for specialized CF dieticians. Currently, we have several pediatric patients that are referred outside of our military clinic and receive their CF care at specialized pediatric hospitals for their routine Pulmonology visits. However, these children have been unable to receive specialized dietician consults along with their CF team visits because Tricare will not cover the services stating that the children can receive dietary consults with the dieticians on-post. However, as I am sure you all agree, CF dietician are ...
Source: Cystic Fibrosis Families Forum - April 6, 2015 Category: Respiratory Medicine Authors: rhcnurse Tags: Families Source Type: forums

Tricare CF Dietician Coverage assistance
Hello, I would greatly appreciate if any one has any recommendations or information about Tricare coverage for specialized CF dieticians. Currently, we have several pediatric patients that are referred outside of our military clinic and receive their CF care at specialized pediatric hospitals for their routine Pulmonology visits. However, these children have been unable to receive specialized dietician consults along with their CF team visits because Tricare will not cover the services stating that the children can receive dietary consults with the dieticians on-post. However, as I am sure you all agree, CF dieticians are...
Source: Cystic Fibrosis Payment Assistance Resources Forum - April 6, 2015 Category: Respiratory Medicine Authors: rhcnurse Tags: Payment Assistance Resources Source Type: forums

Travelling to NY - best care center?
Hi All, We are travelling to New York later this year and are looking for a recommended paediatric care center for our 3 year old PWCF. She's DDF508. We will be staying with my partner's parents near Binghamton. I am not a citizen, but my partner is, and we are currently looking at getting dual citizenship for our daughter to hopefully help with healthcare if need be. Additionally, any help or advice about insurance would be helpful, as I am trying to get my head around the US healthcare system (we don't need it where we are currently)! Does everyone have their kids covered under their own plan until they turn 26? Is Ob...
Source: Cystic Fibrosis Families Forum - April 4, 2015 Category: Respiratory Medicine Authors: Helenlight Tags: Families Source Type: forums