Very sad/strange story here in San Antonio
http://www.ksat.com/news/corpse-taken-from-funeral-home
Julie (25) passed away from complications with cystic fibrosis. Her body was stolen from the funeral home after her service on August 15th. Her poor parents are beside themselves. :( Hoping and praying they find her soon.
Autumn (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 24, 2015 Category: Respiratory Medicine Authors: triples15 Tags: Adults Source Type: forums
Orkambi Journey with 19 y/o Allan Diagnosed at 4 months
I really wasn't sure how to do this. I am the father of Allan. He is a bit shy to post his own thread and definitely not a YouTube video. So here I come. Hope its Ok to start my own thread. You may post in here and ask questions if you wish, if you have CF, a parent of a child with CF or just curious about CF. I am an open book. I can only put in this thread of what my son tells me. He knows this is being done and I do have his consent.
So just a tad bit of background on Allan. He is 19 y/o and he was diagnosed at 4 months old by a Doctor here in Texas.
His Normal FEV1 is usually around 85% on a good day. Had a b...
Source: Cystic Fibrosis Adults Forum - August 24, 2015 Category: Respiratory Medicine Authors: Allansarmy Tags: Adults Source Type: forums
tri verus quad flu shot
Flu shots are available now. I discovered a couple years ago you can get one that covers 3 or 4 strains, but you need to ask for the 4-strain one. Probably a "marketing" gimmick, but figured the broader protection the better.
The "Quadivalent vaccines protect against 4 strains of the flu, A/H3N2, A/H1N1, and 2 strains of influenza B."
The trivalent ones only cover 1 strain of influenza B.
I always call ahead to see if the pharamacy has the quadivalent one.
fwiw (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 23, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Good Probiotic?
I use Plexus Pro Bio. It's the best probiotic for combatting thrush and keeping my gut healthy that I've found. Anyone have suggestions? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 22, 2015 Category: Respiratory Medicine Authors: Brandon Justice Tags: Adults Source Type: forums
CrossFit
I'm pretty new to the forums and I know a lot of you don't know me, but take this from someone who has done just about everything airway clearance wise, crossfit is the best method by far. Starting is one of the best decisions I've ever made. Let me know if you have a method you're a strong believer in and take a look at my blog. brandoncysticfibrosis.wordpress.com (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 22, 2015 Category: Respiratory Medicine Authors: Brandon Justice Tags: Adults Source Type: forums
Orkambi Success
I'm delta F508 homozygous, I'm 20 years old with an FEV1 of 89% and it's all thanks to Orkambi. I've been on the drug for 2 years through its clinical trial phase. Trust me everyone, it's a miracle. Diet and exercise and certain health and wellness products along with Orkambi is key to your success. Take a second to run past my blog brandoncysticfibrosis.wordpress.com I started it yesterday so folks who are interested can track my journey and know that Orkambi not only works, it blew away all of my expectations. My lung function has shot up 14 points in 2 years and this is after a steep down trend. The benefits are there a...
Source: Cystic Fibrosis Adults Forum - August 22, 2015 Category: Respiratory Medicine Authors: Brandon Justice Tags: Adults Source Type: forums
Chest pain when breathing deep and coughing
Has anyone experienced sharp chest pain when breathing deep or coughing (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 22, 2015 Category: Respiratory Medicine Authors: Teri Di Biase Mundt Tags: Adults Source Type: forums
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
"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
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
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
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
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
