CF Foundation attendance policy
Below is a snippet from the CF foundations page regarding indoor events attendance policy.
"To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time."
I'm a huge supporter of the foundation and its mission, but as someone with CF, I find this policy not only demeaning and insulting, but discriminatory. We are adults, and capable of making decisions about the risks we choose to take in life. If we want to smoke, drink, or live on an island surrounded only by...
Source: Cystic Fibrosis Adults Forum - December 17, 2015 Category: Respiratory Medicine Authors: Radies Tags: Adults Source Type: forums
Possibility to prevent meconium ileus while pregnant
Wanted to share this information for those expecting with CF prenatal diagnosis or possibility. It explains a theory and some research that DHA and GSH may help prevent meconium ileus. Obviously not conclusive but DHA is pretty common and you can get scripted prenatal vitmins that have a DHA pill with each vitamin. I was on the vitamin/DHA prescription for probably six months before conceiving and throughout pregnancy and personally think it might have prevent DS from having meconium ileus given that he had DIOS before age 2 (which is basically meconium ileus after birth), and has always had extensive GI issues.
htt...
Source: Cystic Fibrosis Adults Forum - December 14, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Why was my post deleted?
Hi, I posted about a research opportunity in Cincinnati, and now my post is gone. Can you tell me why it was removed?
Andrea
35 w CF (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 14, 2015 Category: Respiratory Medicine Authors: Andrea315 Tags: Adults Source Type: forums
Afflovest?
Just wondering if anyone has used the Afflovest? Is there any significant differences between the effectiveness of that versus the Hill-Rom? My doctor won't prescribe it for me since he has read it doesn't work as well as the Hill-Rom, but I need something portable for business trips. Flutter/Aerobika/ACBT is not effective for me without the help of an "external" form of therapy as well. Thanks for any advice. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 11, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums
Pancreatic Sufficient and Kalydeco
Hello,
Well by some miracle (namely our saintly CF doc) my older son got Kalydeco off label despite only having one known CFTR mutation. He starts tomorrow. I was wondering if anyone else like him (Pancreatic Sufficient) has taken Kalydeco? If so, have you found that eating certain foods with it make it more effective? My son does not have a problem keeping on weight (he is on the chubby side) but he does have intestinal issues when he has a high carb, low fiber diet. He has been doing well with a low Glycemic Index diet when he complies with it (when he doesn't he is on the toilet a lot). But I was wondering what k...
Source: Cystic Fibrosis Adults Forum - December 11, 2015 Category: Respiratory Medicine Authors: fel Tags: Adults Source Type: forums
Port infections--probiotics may cause
Had quarterly CF appointment a week ago and after reviewing DS's meds which included Culturelle, the dietitian asked if DS had a port. I said no and she explained at the recent CF conference they discussed CFers getting port infections from adding probiotic powder into the port (if I understood correctly). So if you or your little one has a port and uses probiotics you might want to discuss with clinic. fwiw (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 10, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Cayston's Horrible Packaging
cayston.jpg
I've never liked cayston's packaging, but this is new, and seems to be worse than ever! they give no email address on their website, i'm not going to call them, and i'm also not going to send them a letter through snail mail. I just wanted to rant!!
If anyone has any special connections to the cayston people, feel free to show them this. Tell them that i didnt throw those first five away, but that i'm gonna hafta go buy a tiny pair of needle-nose pliers before i can open them! (slightly joking, but not really)
And you only hafta make the mistake once (or in my case, like... 5 times) of using a knife to pry th...
Source: Cystic Fibrosis Adults Forum - December 5, 2015 Category: Respiratory Medicine Authors: DjFunkyFife Tags: Adults Source Type: forums
Moving to another state
My husband and I are considering moving from nj to sc. I have some concerns about the move now that i have been diagnosed with cf. I am worried about changing health insurance. Will insurance from a new ins company cover my cf needs or will they call it a "preexisting condition"? Will I be able to continue on kalydeco since i am currently on it off label? What are the adult cf drs like in the charleston area? I'd love to hear if anyone else has had experience with this and how it turned out for them. Thanks for your input in advance. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 4, 2015 Category: Respiratory Medicine Authors: alikat0079 Tags: Adults Source Type: forums
Support for genetic testing with negative sweat test
I know we often say you can have a negative sweat test and still have cf and have noted several here have had that happen and have recommended posters to push doctors for genetic tests when cf symptoms but negative sweat test. But it sounds like the doctors don't buy it...well in searching for something else I found this from cff.org
https://www.cff.org/PDF-Archive/Diag...trics-2007.pdf
Guideline 16 summarizes this point with a reference to a journal article. So those pushing for genetic testing based on symptoms this might help. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 3, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
should I push for testing?
Ok, I have never done this before, but I need some advice. A little bit of history-my husband(27) had very frequent lung infections as a child. His bedsheets always had a salt residue on them from his night sweats(which he still has). They had him tested for cf, but his results were borderline, & he was never retested. The summer before we got married(he was 20 years old), he ended up in the ER for diagnosed pleurisy. From that point on, he has had a chronic cough, & allergy symptoms that don't ever go away. Fast forward to current. He is exhausted. He can't sleep at night, & his sinus infections will not go aw...
Source: Cystic Fibrosis Adults Forum - December 2, 2015 Category: Respiratory Medicine Authors: themrsstacey Tags: Adults Source Type: forums
Singing and lung disease
http://paidpost.nytimes.com/philips/...e&action=click (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums
Giving Tuesday!
We are getting ready to launch our new site...which the HOLs agree is wonderful!
At cysticfibrosis.com we have been CF Awareness for 20 years from the patients up!
Through our CFTechnology.org 501 C 3 we can give away technology and we are always about education! We have been approached from clinics all over the world...needing technology and supplies.
So if you are looking for a place to give today...
Donate
And WATCH for our new site...it will surprise you!
Thank you!
Salt and light,
Jeanne (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums
Need ideas
Im on the great strides advisory committee for my local CFF chapter. I have a meeting tonight and am looking for ideas to pass along. Its been noted that most of great strides participants are families that have children with CF. Therere a lot of activities at the walk that are focused on kids, so this makes sense. Does anyone have any ideas on how to increase involvement of adults with CF? Of course, the infection control restrictions make this especially challenging. Ideas dont have to be focused on great strides event. Any ideas to actively engage and encourage adult involvement in fundraising are welcomed. (S...
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: jricci Tags: Adults Source Type: forums
job
hi,
i,m new to this. just a quick question, do any of you pwcf work in construction? im apprentice carpenter at the moment, but i have been told by my doctor i had to give up cos of dust. so i am wondering any of ye out there are carpenter or builder or construction worker?
thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 28, 2015 Category: Respiratory Medicine Authors: Nicholas O'Halloran Tags: Adults Source Type: forums
Cayston
I have a 23 day supply of Cayston with a exp date of 3/17. If anyone wants it send me a PM.
Bill (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 27, 2015 Category: Respiratory Medicine Authors: Printer Tags: Adults Source Type: forums
