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I don't know if he can do a nasal rinse but I suggest that he does​ a few hours before the sputum culture. I'm not doing full sinus rinse these days and have found Arm and Hammer's nasal sinus rinse, an aerosol spray that works if he can't/won't do a regular sinus rinse. My CF clinic usually...

This is great news about your mutation and Kalydeco. Considering that Orkambi is effective for ∆F508 and Orkambi is a combination of a CFTR moderator and Kalydeco, effective potentially on your mutation set with the news that Kalydeco helps G1069R. This is great news if you are by chance far...

Don't be frightened. Most late diagnosed CFers will tell you that it's far better to delay diagnosis than being diagnosed at birth. Some of it is humor over the restricted lives our parents would have undoubtedly imposed. The main thing is not being so sick that diagnosis is inevitable...

As soon as drugs like Kalydeco became available, my focus on CF turned to MDR or Multiple Drug Resistant bacteria, same thing as Pan-Resistant Bacteria. Personally I like the term you use, it's shorter and more inclusive. What you have left after a genetic drug arrests the symptoms of CF are...

Ooh, heartburn, if that's what it is, might be a standard symptom of CF. I'm frequently saying that I have GI dominant CF, a less serious form of CF. I'm beginning to feel that GI dominant issues don't get the attention and respect they deserve. Pulmonary issues are more deadly and usually...

Come to think of it, I do have a certain Guy perspective. In my defense one area I can get into my feminine side is my appreciation for fashion. When it comes to shopping for clothes and shoes, I was like most boys, tagging along with my grandmother or mother up to the age when I didn't need...

Julie61554 I'm amazed that you are able to function without oxygen. I'm very curious why you don't need it. In my working years it was common to have business guests from other countries, most of them living near sea level. As a good host, I took nearly all of them up into the mountains...

Is it possible that your sore throat drainage is the source of the clear/bubbly/thin mucus? Something on the flip side would be aspiration of stomach acid. I don't have CF lungs and what comes from nebulizing or coughing, is one or the other sources of what comes up. The irritation from...

It's definitely associated with CF and it seems only CF. Being a person who distrusts almost everything, especially when it comes to absolutes​, I expected it was in other disorders. It's not. Not to sound cliche but you asked a great question. What is it about CF to have a unique its own...

The only thing I have a real complaint about modern shoes, walking, running and anything sport, is when they make the sole about 2 sizes bigger than the shoe. We all know them. As a non-runner myself, I go for walking shoes. I assume you have healthy, ( no bunions, plantar fasciitis, flat...

I'm wondering if it is liquid, water, he is craving or something else. Sugar, carbs and simple salt is a short list. Something I have been doing for the last four years is my daily "big drink". Mostly it's a 26oz glass of Gatorade, Fierce Berry Fruit Punch drank from a straw. There's some...

The marginalized CF carrier is an unfortunate situation and the beginning of countless hours trying to figure out what is going on. As a carrier and parent to a CF carrier it is not surprising that you have symptoms, albeit not as severe as full blown CF at the other end of the spectrum. If...

When I was at the age when my friends were having babies, I enjoyed the imagination and creativity of my friends, turned parents. When visiting a good friend who had a toddler, my first surprise was the banana she gave her boy. Seconds later I was wondering what happened to the banana. I...

Thanks for noting the exact wording. I was able to locate it in the CFTR Database and it has been analyzed as to it's biochemistry but I'm not coming up with any research on how it operates, or impacts the patient . With ~2,000 CFTR mutations and now polymorphisms​ like 7T/7T and such, the...

Suran, I'm not familiar with the first mutation, and it's possible that somehow you have the 2 names for it have an error, like a misplaced or wrong letter or number. After searching several databases, I can't find it. I have information on the 7T but I'm afraid I need your help. Any chance...

Just a side note, codeine is one of those opioids that many people have less than pleasant effects from. The classic Tylenol #3, is or was OTC in Canada, script in the U.S., should be banned IMHO if for no other reason than the edgey agitation and bizarre dreams/hallucinations it's known for...

Jshet22, What a nightmare! What's sad is the popularity of this dystopian dream amongst​ the CF community. I remember my mother dragging me around town searching for the source of my newly presented "wheeze". I'm at a loss as to why she was so concerned about the new symptom, but it was one...

Wow! I have often wondered if nail health is a nutritional issue but really was too lazy to get scientific about it. From as long as I can remember, gelatin was my mother's treatment for leg cramps​ and nail health. Amazing how iron is good for nails and leg cramps​. It's a family thing in...

Jshet22, Thanks for the compliment. It came at a time I could do with an "attaboy". I'll have to work on being more concise, you're not the only person who has done a double read of my meaty morsels. One of my Asian distributors used to tell his clients that I spoke in High Density. Thanks...

The range for an infant under six months of age is: 0-29 unlikely, 30-59 intermediate or possible and 60+ it is likely or positive. Beyond 6 months: 0-39 unlikely, 40-59 intermediate or possible and 60+ it's likely. A sweat chloride test may have to be repeated several times when CF is...