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It's always wise to exercise common sense and maintain a certain level of preparedness for emergency. It's kind of like keeping jumper cables and basic tools in your car- you hope you don't need them, but when you do you are awfully grateful to have them. Just over a year ago we lost power for...

It is very scary the first time this happens! I'm glad you heard back and have a plan. I hope it doesn't happen again. Emily has been coughing up small amounts of blood streaked sputum for a while when she's sick and its part of her established "normal" for exacerbations. The first time she...

Oh goodness...!!!! 1/ As posted... she should be getting labs yearly. This has truly been NEGLECT not to do so for so long (edited to add: on the doctor's part, not yours of course!!) I agree that thyroid disease sounds quite possible when considering the weight gain and constipation and needs...

I looked around for a post asking this question and couldn't find one that had upsetting replies- granted, it may have been obvious but for whatever reason I didn't see it. But at any rate- anyone that asks "when will there be a cure?" is going to get a HUGE mixed bag of responses, because...

Of course we all choose for ourselves what to read here and who we will choose to support. And yes, my reference was to refraining from personal attacks. Your first post expressed an opinion in favor of the nurse, which I never said anything about. (Of course, Murgie was 100% within her rights...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>beautifulsoul</b></i> The original poster has asked for SUPPORT....This is not a pick sides topic. Please stay on topic and post replies only to the original poster. Considering Bill's words and opinion's he was clearly standing by...

I was wondering along the same lines as Teri- upon seeing g551d in your sig I wanted to ask if you were on Kalydeco and how you were doing, and then saw that you have been dx'ed with entirely different mutations. What led to this confusion? And as Teri said, what about your son? He has one of...

That is more than reasonable! Non-profits still have to cover their operating expenses and this is not a burdensome fee at all for the service you provide- especially since you would only charge those who win their case. I understand why you feel as you do approaching this as a last resort...

It had occurred to me when your son was asked about breakfast he'd either 1/ not seen the menu for the next day to know what he wanted to order and hadn't yet thought about it or 2/ given part of why he was in was due to the diabetes being so uncontrolled, perhaps you thought some some medical...

Oh goodness. I'm all for cutting a bit of slack (as in not reading into every little thing said and done) as no one is perfect- but this is way over the top and goes far beyond that. "maybe this is why you can't manage his health care at home"?!? I think I would have LOST it. That was...

All kids try hypersal in clinic for the first time at our center since it can cause bronchospasm, especially for people that have issues with a lot of inflammation/asthma. Emily did pft's, albuterol, pft's, hypersal, pft's. She had a productive cough and junk draining from her sinuses that first...

I don't quite understand... this forum is filled with the people you are looking for, but that doesn't quite seem to be what you are asking for- you are referring to what you've been reading here. Who is treading on your dreams? Those who are dealing with the realities of cf- sickness, disease...

Since he was doing better with his tube feeds before he stopped tolerating larger amounts at night, can a small amount be considered during the day- for example, AFTER he has eaten his fill, a small bolus (just one 60ml syringe) be given, so by the end of the day he's gotten one additional can...

Thinking of Tom, Micah and the entire family... Peace, strength and comfort to all.

Some CF Centers pass out into (especially right at the time of dx) in huge amounts and never pause long enough to answer questions or even see if we HAVE questions. It doesn't necessarily mean they don't provide excellent care- it's often an indication that the human side is somewhat lacking...

Some CF Centers pass out into (especially right at the time of dx) in huge amounts and never pause long enough to answer questions or even see if we HAVE questions. It doesn't necessarily mean they don't provide excellent care- it's often an indication that the human side is somewhat lacking...

If you don't finish your programmed session, the light stays on foreverrrrr. If it goes all the way through to 'session complete' the light shuts off within a few minutes. Home screen it goes off as well.

If you don't finish your programmed session, the light stays on foreverrrrr. If it goes all the way through to 'session complete' the light shuts off within a few minutes. Home screen it goes off as well.

Sidestream is fast, but this is due to how much med is wasted (unless you get their newer breath enhanced version- I'm curious to know if that one takes longer, more like a Pari.) The benefit of the Sidestream is mainly seen when paired specifically with the 50psi compressors due to the smaller...

Sidestream is fast, but this is due to how much med is wasted (unless you get their newer breath enhanced version- I'm curious to know if that one takes longer, more like a Pari.) The benefit of the Sidestream is mainly seen when paired specifically with the 50psi compressors due to the smaller...