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Your looking for bad luck and knocken on wood. CF is as much attitude as it is presentation, or in other words severity. CF is both variable fron case to case and variable over time. A common thread in CF and other chronic diseases is the physiology of constantly fighting it. "What doesn't kill...

A lifetime ago, I came upon the most horrible road accident. It was late at night on a Wyoming two lane highway. An elk and car met at speed. I placed a family of four carefully at the road side applying tourniquets and pressure as I could, in near total darkness. One by one the three that were...

My doc prescribed O2 at night about five years ago. I so far have ignored it and as near as I can tell haven't suffered dementia. I do not recommen this solution at all. But even after 30+ years of marriage, there are some things I know she can't handle. What I am saying is your fear is far from...

Oops, you caught me. My lengthy posts are serious stuff hidden in stories. Thank you for the history of your Dx process. Also if I or insurance has to pay Johns Hopkins, I will be investigating repeating my genetic test there. I have an increasing desire to understand more fully the...

That is it could emblazon my tombstone one day. Ok, that one has whiskers, but there is a mixed bag with going 50 years wo/Dx. I have a team of doctors, and have had just a few GPs. With the failure of doctors including my CF clinic, malnutrition has taken its toll. I am certain the Team of...

Incomudrox, I follow you, and others, with interest. I was a little surprised that you appear to have repeated your genetic test. Am I understanding that correctly? The reason I ask is I am considering repeating my test. Ambry toasted the first test in some new equipment in 2002 and repeated it...

Either way, this smacks of aspiration. Stomach acid either is causing GERD or aspiration of stomach contents. This may require medication and a possibly elevating the torso at night. The latter motivates, me to eat early and light to avoid sleeping at an angle. If this is a correct assumption...

Meow, this got catty rather fast. Printer and I would have given ice cream as a first answer. If you saw no humor in his junk food remedy when ice cream was rejected, too bad. Despite the reasons, healthy foods are paramount and the younger, the better. In a conversation I had with a fellow...

The only possible help I may be adding (sorry, I usually read all posts) has to do with insurance. We periodically have bumped heads with our health insurance. My wife's first call to the insurance company solidfied her next action. We hired a laywer. (Granted, we are expensive, but nearly 20...

I wish I knew that answer. A couple years ago I was screened and from my vitamin/minerals I am dead. If you subtract 1950 from the given year, you will know my age which now is 62. Most of my life I have taken a decent multivitamin. At 50, when I was diagnosed, I amped up my suspected...

In the forum Maybe CF, Maybe Not CF some incredible thoughts and insights surfaced. "CrisDopher" said he often laments the CFTR gene mutation ever being discovered. This discovery came in 1989, not long ago in the scope of medicine just over twenty years has passed. I have a doctorate in...

I wasn't diagnosed until my '50s. Born in 1950 I am pre Dr. Spock and post buggy switch. My hurt that remains is "hypochondriac" alonf with it's colloquial definition. But I was the medical progeny of a short lived father who most likely also had CF. If my parents feared my health, they never...

For those who read a couple recent forums, (anybody got M470V and CF or not CF) I think several carriers have been asking this question. Putting aside genetic sophistry for the moment, we feel minimalized, doubted and generally ignored. By luck, I had a pancreatic function test and sweat tests...

From a long term perspective most CFers that have high liver enzymes. It is a common CF complaint in other words a common symptom of CF. It is the old saw of thick mucous navigating poorly through the liver. Bile is important in digesting fats including extracting fat soluble vitamins. For most...

Congratulations to you both. Two wonderful lives have graced your world. At birth, we discover the health issues that need attention. You didn't mention any other problems. Can they hear, do they have functional eyes, is there any paralysis in their bodies, minor or massive cleft faces? I assume...

I live in Denver and non oxygen users finger out dry boogers. It is high, dry and sunny, adding oxygen is hell. KY isn't a first choice. We all have vascular rich noses fed by some big arteries and veins. I buy nasal cream from a compounding pharmacy. Yes they expect rich dry oxygen so don't...

Motrin, Tylenol and NSAID's in general don't impress me as a safe drug during pregnancy. Afrin, for the record is two puffs in each nostril every 12 hours. There was a time I would do much more. I am older, more diciplined and do half the recommended dosage and it works fine. It has easy warning...

Beccamom, The short answer is yes. Over the years I have become phobic over salt. When I down a sports drink, how much I drink is self limiting. Tooo much or too fast and up it comes. My heart goes out to Becca. At a time when holding hands with a special friend becomes more problematic, not...

Beccamom, The short answer is yes. Over the years I have become phobic over salt. When I down a sports drink, how much I drink is self limiting. Tooo much or too fast and up it comes. My heart goes out to Becca. At a time when holding hands with a special friend becomes more problematic, not...

Beccamom raises a good question. My sweat is so extreme, a passing breeze will often evaporate the water leaving my skin, especially my forehead looking dry and scaled. It is just dry salt. When I go bicycling, I wear two sweat bands. If exercise sweat gets in my eyes it burns like sin. I...