Recent content by Andrea2XCFers

when my first son was born The Dance (Garth Brooks) was what I'd sing along to and start crying (I did not know about CF then)...so that song still has great meaning for both my boys and our family's long history with CF. Frankly, however, we really have more of a Twisted Sister "We're Not...

do your doctors take you off Pulmozyme and TOBI? they took my 17 year old off all nebulized meds except albuterol...

do your doctors take you off Pulmozyme and TOBI? they took my 17 year old off all nebulized meds except albuterol...

You only get one shot at life, so make the most of it! The BF sounds like a LOT of work...emotionally and financially. Seems like it would be better to be a little lonely than put up with all that crap. Get out of there and move on with your life!

You only get one shot at life, so make the most of it! The BF sounds like a LOT of work...emotionally and financially. Seems like it would be better to be a little lonely than put up with all that crap. Get out of there and move on with your life!

my 17 year old had one lugie with some streaking after jogging. His doctor looked at his last four cultures and he'd had pseud. aeriginosa in three of them, with oral antibiotics each time (and Tobi). My son got a PICC for two weeks of Timentin and Tobra. Doc said that blood is not normal and...

my 17 year old had one lugie with some streaking after jogging. His doctor looked at his last four cultures and he'd had pseud. aeriginosa in three of them, with oral antibiotics each time (and Tobi). My son got a PICC for two weeks of Timentin and Tobra. Doc said that blood is not normal and...

My boys are 20 and 17. Their baseline seems to slip a little each year and the docs keep telling me that it's the age/weight ratio messing with the predicted values. My question is for the CFers in their mid 20's and up: do you find it harder to get back up to "baseline" as you get older? If so...

My boys are 20 and 17. Their baseline seems to slip a little each year and the docs keep telling me that it's the age/weight ratio messing with the predicted values. My question is for the CFers in their mid 20's and up: do you find it harder to get back up to "baseline" as you get older? If so...

my boys are 6'4" and 6'2"...but then, the whole family is tall! They were predicted to be 6'7", so maybe CF kept them a little shorter? I think their early height actually kept us from diagnosis...doctors kept saying "but they aren't failing to thrive...look how tall they are!" (eyes rolling)

my boys are 6'4" and 6'2"...but then, the whole family is tall! They were predicted to be 6'7", so maybe CF kept them a little shorter? I think their early height actually kept us from diagnosis...doctors kept saying "but they aren't failing to thrive...look how tall they are!" (eyes rolling)

I'm so sorry you are sad and lonely. I really hope things get better, or at least don't seem as sad and hopeless as they sound right now. It sounds to me like you've been getting sicker while trying to pretend there's nothing wrong. My teen CFers do that, too. Unfortunately, we can't just...

I'm so sorry you are sad and lonely. I really hope things get better, or at least don't seem as sad and hopeless as they sound right now. It sounds to me like you've been getting sicker while trying to pretend there's nothing wrong. My teen CFers do that, too. Unfortunately, we can't just...

My guys were 5 and 2 when diagnosed by sweat test. A regular lab did it on the older one and was positive, but the CF center wanted their own (that's when they did the other son, too). No lie, it's a devastating diagnosis, but the sooner you jump on it, the better off she'll be! You've...

My guys were 5 and 2 when diagnosed by sweat test. A regular lab did it on the older one and was positive, but the CF center wanted their own (that's when they did the other son, too). No lie, it's a devastating diagnosis, but the sooner you jump on it, the better off she'll be! You've...