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Hocking up phlegm opposed to spitting out freshly coughed lung mucous is a difference of a mess of organisms or a useful culture. In my child mind I always believed mucous formed in the nose and head and drained down the throat, catching some mucous down into the lungs. Like most kids when a...

I get the part about the smell depending on the smeller. Try asking the nurse to place your Creon out on a paper saucer or cup a couple hours before you need to take them. Or, cut little disks out of a (new) pair of OderEaters and place them in your Creon bottles or whatever stinks. Better...

Enzo, I should remember your presentation of CF but right now I am drawing a blank. The short version is it is worth a try. Be honest with MM just as you would with any other medicine, if your cough medicine tastes good but isn’t working, quit. If you, or anybody else, wants to PM me with...

KayyyA, Welcome to genetic limbo. As Printer explained basic neo-natal tests that include CF, catch most CF patients in total numbers but over 90% of the CFTR mutations aren't routinely tested for. For all the fuss over CF genetics, for now, it is much to do about nothing excepting a lucky few...

I ran your issue by a neighbor who is a PA and the mother of two "autistic" children. Generally speaking rittilan lowers the hyperactivity of a person if they are indeed ADHD. Your caution may be the problem since stimulants used for ADHD are more effective at greater doses. More rittilan (up to...

Anybody with a persistent cough should consider having a swallow sequencing test. If sinus discharge and mucus are being aspirated during exercise it is easily treated. A heck of a lot easier than treating the resulting infections. LL

.National Jewish Health sorry. And the mutation and drug I can't find the abstract on so I am going to go with what a GUESS. It was DF508 or such. This mutation gets named and confused with several others with the delta character not always available and some use delta for del(etion). NJH has...

I think a therapy dog or cat is a wonderful idea. Maybe having a therapy animal could be provided on a visiting basis. If you use a therapy dog, in cases I know, the animal has been pre selected for temperament and then especially trained. Therapy animals can be owned and in the case of mental...

With at least two gene specific CF drugs an argument for normally denied genetic testing could be made. Kalydeco, now on the market treats one specific mutation and acts as a CF moderator in some mutation groups. NJH is running a trial that could impact two thirds of CF patients so there is good...

Try rinsing over the sink either before or shortly after dinner. After trying a number of additives to my sinus rinse I came back to hot salt water. For some reason I can pump very hot water through my sinuses up around 115 degrees. This is scalding hot for normal skin but it gets the blood and...

I think you are doing all you can right now. Try to be comfortable with that and distance your fears from your diligence over your daughter's health. You suspect CF and the numbers just aren't confirming it. Yet. A common theme I see throughout this community is a period of transition from...

This problem is pretty common with or without CF effecting one in three women, including adolescent young women. I think the solution to this problem has been given in the form of kegel exercises and such. My niece has dealt with issues since she was tiny. At sixteen now she performs exercises...

As tempting as your ideas are, you need to add a new doctor to your team. I have been through this routine a few times. Every so often either prescription drug overdose statistics make the news or new MDR pathogens emerge and narcotics or antibiotics get relegated to the eye dropper. When...

I have been employee and employer in my 63 years. I was diagnosed with CF at age 52. Prior to that I was diagnosed with several Idiopathic conditions ranging from IBS, GERD and GI whatever to idiopathic ENT disorders and perennial bouts of pneumonia. As an employee it never occured to me that I...

Wonderful to hear you have a new shot at life. Maybe we can out do Kalydeco and put a genetic end to this genetic problem LL

Thanks guys I have wondered about this measure myself. I have gone from good to even better being at 92% ten years ago to 105% recently. Notably my oxygenation has always been low so like any physical exam, even just the lungs requires balancing several factors to say how healthy your lungs or...

The children of parents who don't fear death will learn to love life.LL

Gnani Yoga? Hatha Yoga? Raja Yoga? This isn't a flip set of questions but Yoga isn't Jazzercise and what passes for Yoga today popularly has little bearing on classical teachings of Yoga. If I can recommend Yoga for CFers, I would introduce you all to Raja Yoga. I meditate. While I am...

FYI Apple Cider Vinegar has many good uses. Although for many, vinegar is a convenient preservative, that pickle or pickled veggies bring more than an interesting taste. People with CF bloating or death farts can get a liver/gall bladder cleansing with that tablespoon or whatever mixed in your...

I might be partly behind information concerning CF semen and sperm motility. The female CFer can contribute a less conducive environment for conception with pretty much the same problems involving fluids. Take heart, if CFer's were all infertile, I wouldn't be here. My father had CF, three...