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Mikey, I just gave your tune a listen. "It moves me", in the words of the Alien Spock. Only moments ago I closed my eyes and tried to hear/feel your message so this is from the gut. There is the intensity all CFers feel in the constant push through life with a mucus trail at our feet and you...

Jellybaby, I wish I knew how non-concerning hemoptysis or blood goobers from the lungs in fact are. My lungs have "ground glass" scarring and several rosette scars throughout my lungs making them essentially opaque under X-ray, but I just blew 118% last week. The short of it was I have great...

I have posted on this topic before but there is more to the song "A Spoon Full of Sugar" than rhyme. Pharmacists candy coat medicines all the time. I take AquaDEKs myself and realize the vitamins are contained int the gel caps. Walgreens will coat or flavor medicines, see if they can do...

Overall, CFers have CRMS or cystic fibrosis metabolic syndrome on top of the other CF issues that challenge our systems, sapping energy. Malabsorption begets malnutrition so we can be under-nourished. This can mean too few calories but it also could be growth related vitamins and minerals. To...

Bailey Vincent, Kudos! Yeah, I actually bought the combo of hypochondria and the ever undefinable "nervous stomach" LOL, man, this could be made into a sitcom. LL

Hopefully your wife knows her Bible, I can't even get angry at the pathetic people quoting the Good Book like a lawyer for God. I was in the ER one time giving birth to yet another kidney stone and a sympathetic nurse was keeping me company along with my agony. She told me she had one kidney...

This may be a silly question but since this is not yet happening are you certain you classify as "at risk"? At risk momz usually are 13 year olds, drug addicts and HIV positive women. That is the highest risk people for whom the law was written, they have good* reasons to avoid disclosing their...

Born 1950, (age 63) Wyoming Married twice, 1971-1977 Elaine and 1980- to death do we part, Marjorie, a mortal angel. DX at age 52 by Salt Chloride Test after world record (for bad) pancreatic function test. Heterozygous S1235R. Atypical CF, I probably would have been considered CRMS most of my...

Thank goodness other responses have provided some good information. My efforts to find out what is happening concerning trials for Kalyedeco and similar drugs had underwhelming results. I probably wasn't the first person that hour, let alone this year to pump the poor guy for the scoop on...

Ok, did I actually coin CF geezer? Apologies to those who haven't noticed, or aren't geezers. Born 1950 Wyoming, 63 now and I was diagnosed at age 52 by salt chloride test, heterozygous S1235R. All original equipment. Flight to Denver at 3 with pneumonia was the short story. Father diagnosed...

Christy, Most of my CF issues are south of the diaphram, and my 63yr. old pancreas is still working and hurting like sin. The pancreas is capable of regeneration as long as it is a viable organ. Pancreatitis and cholestasis result from thickened pancreatic juices remaining in the pancreas and...

I read the information on the link provided. A solution of Hypersal is going to deliver salt ions in a concerntration well beyond slowly evaporating salts. Sea salts, and nearly every grain of salt on earth is sea salt, are crystals of salt and water. Salt disolved in water becomes completely...

I grew up in an arid environment so when we did find mold, it was an event. As an urban adult the natural humidity is made much higher by the city environment. So now I have a mold problem inside houses and older buildings. I discovered a funny reaction to mold found in libraries when I was a...

Honestly? You bet I would like to know so please share. LL

Just a thought. I helped a friend set up a new CPAP (Continuous Positive Airway Pressure) machine that might do the job you want. CPAP machines provide a source of conditioned air with a fair volume and pressure. Usually attached to a mask, air that is temperature and humidity preconditioned is...

Considering mold is nearly impossible to become desensitized to as an allergy, try to find and eliminate any mold. Several paint additives all the way to special deep penetrating mold sprays can clear your room of the sources of mold. If your lungs are being hit, the allergen is likely airborne...

Before people start having brain scans at nail parlors, it might be wise to look at the effect genetic testing has had on the CF community. In the early use of genetic testing for CF, there was little real life experience to guide us. The tests were limited to a few mutations and everybody was...

The debate over antibiotic silver and colloidal silver is over forty years old for me. The first time I investigated these products I was involved in the holistic movement of that time. Many of my friends had ended up there after following Timothy Leary’s call to tune in, turn on and for some...

Triples15, Yes, Dr. Nick is my CF specialist. I am not certain but possibly he was born at NJH. His young face bertays the years he has been a CF specialist and Head of their Adult CF Clinic. Last time I saw him he had just become the Principal Investigator for a DF508 moderator trial*. Being a...

Congratulations, you are both correct. Elavil as you might guess from this ancient antidepressant’s brand name sort of says “Elevated level “in Slurm, the advertizing science of naming. A lot of depressed alcoholics noted that their sclerotic pancreas and to a lesser degree liver didn’t hurt, on...