Search results

<blockquote>Quote<br><hr>So, my next question is ... what OTHER tests are there? <hr></blockquote> The Ambry (sp?) Genetics blood test is probably the next step. It tests for all of the mutations of the CF gene (or at least a GREAT majority of them). If I were you, I would definitely keep...

Choosing whether or not to be in the presence of other CFers is a choice every CFer and their family has to make. My mom and I choose not to live our lives shunning or pushing other people away because they may culture something I don't. I have to say, talking with CFers is great- no one can...

LOL I guess my mom and I were not the only CF family who had family cough practicing sessions <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ditto to what everyone else said. If all that does not yield any answers, you may want to consider a bronchoscopy. A bronch is when the doctors stick a tube down the throat into the lungs, to collect specimens, film the inside of the lungs with a tiny camera, and sometimes shoot medicine or...

There's a reason CFers aren't given cough suppressants. Coughing helps us keep the infectious/thick mucous in the lungs moving, which is very important. So unless you are coughing so much you can't function, I think cough suppressants are not a good idea.

Hi.. Have they ever done a fecal fat test for your son? You keep all his poop for 72 hours and they measure the amount of fat in it to see if you're having absorbtion issues (how I would hate to have that job in the lab <img src="i/expressions/face-icon-small-smile.gif" border="0">). Some people...

Yeah I was unclear on what this person was referring to also. Care to clarify? Thanks

Luke, No problem, I just wanted to make sure the facts that were on here were correct... and besides my curiousity got the better of me. Just an aside- I don't get called Colleen unless I'm in trouble for something- pretty much everyone calls me Coll. <img...

I was intrigued by that whole tattoo/blood donation thing so I looked it up on redcross.org. The eligibility page actually says that those with tattoos can still donate blood, but they must wait 12 months after getting their tattoo to donate...

Maria, SR, and Traci's Mom, It is quite a mystery what indicates severity (even among siblings with the same mutations, doctors have found differences in severity, so some are seeing if there is a 'modifier' gene involved in CF severity- but anyway). Just a curiousity question- did you (or...

<blockquote>Quote<br><hr>. You want that junk out...now sometimes albuterol can make you feel shaky or have a increased heart beat, if that happens there are alternate broncodialters or you are told to dilute albuterol. <hr></blockquote> Sort of irrelevent, but if Albuterol makes you shaky and...

Yep, Maria it was me who posted that initially, and I was kind of perplexed by the lack of response initially. I've been on nebulizers for as long as I can remember (in reality, it was around 4 I started them). I've taken puffers and pills before that. My mom was amazing about ensuring all my...

<blockquote>Quote<br><hr>Everyone is different and as long as he takes care of himself and take all his meds he will do amazingly well......<hr></blockquote> Sorry if I'm misinterpreting this, but as I read that, you seem to think that CF is a completely controllable disease. I'm kind of taking...

<blockquote>Quote<br><hr>According to the CF Foundation's National Patient Registry, the median age of survival for a person with CF is 33.4 years. <hr></blockquote> I stand corrected <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm too lazy to edit my previous post, so just...

While research is going on as I type, and lung transplants are becoming more successful than ever, the fact is, the average life expectancy is still 32 years old (compared to a US average of maybe 76ish). For kids born today, that will probably be higher. For all I know, next year it will jump...

The only connection between weather and stomach I can think of are: 1. Heat causing dehydration to be more likely. 2. Sometimes if it is damp/humid etc., and you are struggling more to breathe, you can accidently swallow air into your stomach, causing gas... far fetched, but possible Other than...

Ditto on the whole CF Camp thing- I think they are pretty much obsolete now anyway. I always knew that I had something called CF, and as I had questions, my mom answered them as honestly as she could. When I was around 8, someone who had CF that I knew died at about 40. This was the first time...

Yep, we're pretty fun once you get to know us <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lisa, If your daughter wants, I'd be happy to chat with her too. Let me know if you want my AIM screenname

I also am never cold. Sometimes my mom will come home from the store or something and say "It's so cold in here turn the heat up!" And I'm completely comfortable LOL.