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Thanks to Aleksandra for setting the record straight concerning Kalydeco. When I first ran accross it, I was reviewing the research and Kaly just had a number. Memory is not my strong suit and I will never feel bad being corrected. Western medicine has been shooting blanks at CF. The drugs in...

Don't do this. Oxymetazoline HCL or Afrin nasal spray is my sinus drug of choice. It shrinks those membranes like heat wrap. That along with something akin to Allegra for allergies. See if your ttl doc has a problem with Afrin and discuss allergy meds as well. Your ENT may not operate until you...

I may be just what you are looking for. First diagnosed at 50, by virtue of the fact I am still alive at 62, my CF is "mild". I am heterozygous (one copy) for CFTR S1235R, homozygous CFTR M470V with a 7T/7T polymorphism. Prior to what in 2002 was a very expensive test, I had a positive sweat...

The best I can suggest to work around insurance is keep those documents establishing your baby. Keep them for a more enlightened time for yourself but also keep it from your doctors. Go see a GI doc for her GI problems, ENT for all the ear, sinus and throat infections. In dealing with CF's...

Welcome Kapsy. Others have skillfully given you the short course on CF. As already discovered, you are far from alone. India is advanced in medicine dating to antiquity western medicine owes Indian practitioners, surgeons and chemists a debt that can never be repaid. Cystic Fibrosis in India is...

If keeping cool is the problem you wish to solve, I had an experience that might help. While surveying outside of Sundance Wyoming an unusual summer mid day temperatures were 120+ F, with 75% humidity. Being a CFer, this was intolerable. I fashioned a "cold vest" that was a life saver. Starting...

If keeping cool is the problem you wish to solve, I had an experience that might help. While surveying outside of Sundance Wyoming an unusual summer mid day temperatures were 120+ F, with 75% humidity. Being a CFer, this was intolerable. I fashioned a "cold vest" that was a life saver. Starting...

JustaCFmom, Welcome. When I was 20, I sucked life in through a fire hose. Etreme sports not yet on the radar occupied my time. The only thing I did for my lungs was steam, lots of hot steam. Decades later I was given a hypertonic saline treatment. I also felt weak, right after and for a few...

JustaCFmom, Welcome. When I was 20, I sucked life in through a fire hose. Etreme sports not yet on the radar occupied my time. The only thing I did for my lungs was steam, lots of hot steam. Decades later I was given a hypertonic saline treatment. I also felt weak, right after and for a few...

JustaCFmom, I meant to encourage you and welcome you to our little club. "Printer" is a Sage among the lot and worhy of consideration on anything. At 20, I was sucking life in through a fire hose. I was an over the top rock climber and mountaineer, down hill ski racer cycler and fencer. All I...

JustaCFmom, I meant to encourage you and welcome you to our little club. "Printer" is a Sage among the lot and worhy of consideration on anything. At 20, I was sucking life in through a fire hose. I was an over the top rock climber and mountaineer, down hill ski racer cycler and fencer. All I...

Welcome JuataCFmom. So after 20 years of worry, doctor, doctor doctor bills and time allocated for doctors you have earned your CF badge. It took three times as long for an indesputable diagnosis. A trusted counselor told me at 18 " you know, you will go a lot further in life if you lose your...

Welcome JuataCFmom. So after 20 years of worry, doctor, doctor doctor bills and time allocated for doctors you have earned your CF badge. It took three times as long for an indesputable diagnosis. A trusted counselor told me at 18 " you know, you will go a lot further in life if you lose your...

At 62yrs, I have a few milestone weights. 18yrs 6'0", 113lbs. 23yrs 5'10" (climbing accident, lots of spinal compression fractures), 140lbs. 30yrs 150lbs. 40yrs still 5'10" 50yrs 118lbs. 62 not quite 5'10" but close 155 and possibly 30lbs could be fecal waste. Adding black swans to the life...

At 62yrs, I have a few milestone weights. 18yrs 6'0", 113lbs. 23yrs 5'10" (climbing accident, lots of spinal compression fractures), 140lbs. 30yrs 150lbs. 40yrs still 5'10" 50yrs 118lbs. 62 not quite 5'10" but close 155 and possibly 30lbs could be fecal waste. Adding black swans to the life...

I have been dying to rant about the rotton teeth my parents gave me. From younger than I remember I have been brushing, flossing, swishing and I thought everybody had teeth cleaned four times per year. I redefined the Catch 22 of rotten teeth, accusations of neglect. A childhood friend is an...

I have been dying to rant about the rotton teeth my parents gave me. From younger than I remember I have been brushing, flossing, swishing and I thought everybody had teeth cleaned four times per year. I redefined the Catch 22 of rotten teeth, accusations of neglect. A childhood friend is an...

I assume you take Creon or other enzyme replacement along with ADEK vitamins. Carnation has renamed Instant Breakfast to Breakfast Essentials. I down at least 3-16oz Breakfast Essentials, I prefer chocolate, with whole milk, and a dose of Creon. I am sensitive to fatty foods so if my weight is...

I assume you take Creon or other enzyme replacement along with ADEK vitamins. Carnation has renamed Instant Breakfast to Breakfast Essentials. I down at least 3-16oz Breakfast Essentials, I prefer chocolate, with whole milk, and a dose of Creon. I am sensitive to fatty foods so if my weight is...

We should develop an anecdotal CFTR mutation database. In one way or another I can relate to each response. I am heterozygous S1235r and have M470V 7T/7T polymorphism. It is ambiguous, even after talking with the geneticist who performed the test whether my '70- was heterozygous or homozygous...