Error message hill rom vest
Ds' vest just stopped, had a message 7 call for service. Unplugged and restarted. Anyone have this message before. Course it's after hours, on a weekend and I'm at the family lake cabin. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 22, 2015 Category: Respiratory Medicine Authors: Ratatosk Tags: Adults Source Type: forums
Negative sweat test but lots of mucus
Well our 7 year old daughter came back negative on sweat test. Which is a relief but leaves me puzzled.
My neice is a carrier. We just found that out.
My daughter has to "heeeave" throughout the day, every day, to work up the mucus and spit it out. It is just part of our daily life. I just don't know what else would be causing all this chest mucus? Any ideas? I hear it is very rare to get false negative on sweat test, even for an atypical cfer.
Perhaps her original diagnosis of asthma is correct? I just don't know.
We've watched videos of asthma and CF on YouTube together. The asthma videos she...
Source: Cystic Fibrosis Newly Diagnosed Forum - August 20, 2015 Category: Respiratory Medicine Authors: Janae Warren Tags: Newly Diagnosed Source Type: forums
"Normal" for CF kids
DS loves pretend play. This morning while wrapping up some work stuff he came in and showed me "Caterpillar's medicine he got from Walgreen's so he doesn't cough when he runs." He had taken a toy, stuck it in an envelop and is stabling a "label" on the outside with various Caterpillaresque prescription names.
He. Melts. My. Heart. Every. Single. Day. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 19, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
carrier with symptoms
I am 44 yo mother of 2 DD (one with DDF 508 and other with 1 D F 508 and 1 3120 G-A). I have been having respiratory issues and PFTs at about 43%. My family dr says maybe it's because I am a carrier (I have to carry the DF 508 as it's the one both my girls have despite different fathers). Any suggestions of where to go from here? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 18, 2015 Category: Respiratory Medicine Authors: heather1 Tags: Adults Source Type: forums
R117H, original carrier diagnosis but should we retest?
My son is 3 years old and has a single r117h 7t gene. at 3-4 wks we did the sweat test and it came back normal around 14. At the time I never thought he was salty tasting. we actually didnt even know he was a carrier until a year and a half later when we continued to have loose stools and I came back to having to do the sweat test and requested the documents of his newborn screening. Suprise to me, I did not know that my state automatically tested for common mutations after a high IRT level. Fast forward and over the last 2 years he has seemed to taste saltier and saltier. So much so that if he sweats at all its like licki...
Source: Cystic Fibrosis Newly Diagnosed Forum - August 18, 2015 Category: Respiratory Medicine Authors: aphillips Tags: Newly Diagnosed Source Type: forums
Anyone willing to do this?
I have an idea for cf awareness and donations. Basically piggybacking on the ALS challenge, having a "CF Puddin' Dump Challange". I feel the use of pudding (mucus) represents CF the best.
Anyone willing to do this challange? Or have any ideas to add? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 17, 2015 Category: Respiratory Medicine Authors: jcro125 Tags: Adults Source Type: forums
Anyone willing to do this?
?????????? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 17, 2015 Category: Respiratory Medicine Authors: jcro125 Tags: Adults Source Type: forums
Anyone willing to do this?
I have an idea for cf awareness and donations. Basically piggybacking on the ALS challenge, having a "CF Puddin' Dump Challange". I feel the use of pudding (mucus) represents CF the best.
Anyone willing to do this challange? Or have any to add? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 17, 2015 Category: Respiratory Medicine Authors: jcro125 Tags: Families Source Type: forums
Respirtech jacket
I recently got a new jacket. I'd always used a black one but thought I'd try something different and got a colored one. I feel it's not doing as good a job as the black one; it's not as tight and I don't feel like it gets the upper lobes as much. To those using the Incourage, do you use a colored vest and find it's doing its job? Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 17, 2015 Category: Respiratory Medicine Authors: anonymous345 Tags: Adults Source Type: forums
Cystic Fibrosis Awareness Campaign
Please help us spread awareness with our Cystic Fibrosis campaign. Thank you.
http://teespring.com/Cystic-fibrosis-Awareness (Source: Cystic Fibrosis Community Initiatives Forum)
Source: Cystic Fibrosis Community Initiatives Forum - August 17, 2015 Category: Respiratory Medicine Authors: kitoliwa Tags: Community Initiatives Source Type: forums
Medicaid criteria for Orkambi
This is Fl, but I think it came federally and thus would apply to all state Medicaid program (but not positive).
http://ahca.myflorida.com/medicaid/P...i_Criteria.pdf
Note they are saying between 40-90% FEV, but that IS NOT a label criteria and the FDA label actually says those under 40% FEV should have extra doctor supervision, so for those outside the parameters on Medicaid, it might mean a fight/appeal, which alone might leave you exhausted and breathless for FEVs. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 17, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Looking for CF people interested in helping with an artwork!
Hi everyone,
My name is Charlotte and I'm from Melbourne.
I'm trying to reach a broad CF audience and I thought this might be a good spot!
I have CF and I'm currently in my final semester of my Fine Art degree, working with the idea of the many forms of isolation experienced in CF. If anyone is willing to, contributions from CF sufferers would be very valued!! I'm collecting hand written responses (if you have a young child maybe they'd like to do a drawing?) so, an image of your hand written response of how you personally interpret isolation in CF in however long, short, literal or abstract as you like!
They can ...
Source: Cystic Fibrosis Community Initiatives Forum - August 16, 2015 Category: Respiratory Medicine Authors: charken Tags: Community Initiatives Source Type: forums
I need some help with a uni artwork!
Hi everyone,
My name is Charlotte and I'm from Melbourne.
I'm trying to reach a broad CF audience and I thought this might be a good spot!
I have CF and I'm currently in my final semester of my Fine Art degree, working with the idea of the many forms of isolation experienced in CF. If anyone is willing to, contributions from CF sufferers would be very valued!! I'm collecting hand written responses (if you have a young child maybe they'd like to do a drawing?) so, an image of your hand written response of how you personally interpret isolation in CF in however long, short, literal or abstract as you like!
They can ...
Source: Cystic Fibrosis Teenagers and Young People Forum - August 16, 2015 Category: Respiratory Medicine Authors: charken Tags: Teenagers and Young People Source Type: forums
Gram stain and culture results for sputum are confusing!!
So my daughter's doctor asked us to test her sputum to see if she has an infection because she's been coughing for too long now (about 2 months). She's 4 and a half years old and this is the first time we have to face this so we're still not familiar with it.
I got her results on the phone and was told that the gram stain showed no WBC's or neutrophils, but the culture stated that she has Haemophilus Influenzae which was also tested for sensitivity and resistance. I guess my questions are:
Does the fact that there are no WBC's or neutrophils rule out the possibility that she has an infection? If that's true then how di...
Source: Cystic Fibrosis Families Forum - August 15, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums
21 YO cf patient looking to move
I currently live in the greater kansas city area and see the KU CF team regularly. I am looking at the possibility of moving to Phoenix Arizona. I have a roommate lined up if I do but other than that I would be alone with the nearest family over 2 hours away. I have more than just my CF to contend with as well as typical CF problems with infections and viral and bacterial pneumonia within the past year. MY past PFT was only about 55% average. At the moment I am being tested for TB because of some symptoms I have been having including small portions of blood in my mucus from the lungs. Other problems i have include the rare...
Source: Cystic Fibrosis Adults Forum - August 14, 2015 Category: Respiratory Medicine Authors: b4herbiesbug Tags: Adults Source Type: forums
