What is your dream hospital?
Having CF we can't avoid going in the hospital and since we've got to be there for so long it can get old really quick. What do you envision the hospital having to make the best stay for CFs? And how does it compare to what's at your current hospital?
I can't really say how things are for the CFs cause I just moved and honestly don't know. But I think what would make a great stay would be snacks, treadmill, DVD player, video game system, movies, small refrigerator, ect ..... (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 2, 2015 Category: Respiratory Medicine Authors: leothelioness34 Tags: Adults Source Type: forums
I had an idea.. fitness wearable to help CF in all ways
So I think using some software, some sensors -> specifically the newer technology out (sensors) we can make fitness bands that are specific to CF (but could help others!). And the best part is, I think if we can measure and interpret the data correctly, we can provide CF users with accurate information based on the sensors, which can help improve the quality of life (or help us predict potential failing points in our body). The technology is limited (i don't think it can predict PFTS... yet), but it's just an idea that we may be able to exploit the new sensors that are being introduced into society for our benefit as a ...
Source: Cystic Fibrosis Adults Forum - November 2, 2015 Category: Respiratory Medicine Authors: Dank Tags: Adults Source Type: forums
gene c.3140-26a
I just found out the other mutated gene that my 2 month old son has. He has the deltaF508 and gene c.3140-26a. I think this gene falls into the Class V cartegory but I am not positive. I am wondering if anyone else has experienced this combination or can help shed some light on what Class V is. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - October 30, 2015 Category: Respiratory Medicine Authors: iwuvwoo Tags: DNA and Mutations Source Type: forums
For those struggling with m abscesses
http://www.sciencedirect.com/science...52396415301109
cystemine is fda approved and available for another condition. While early on study, if nothing is working this might be worth a shot. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 30, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Vertex Conference Call
Vertex had a conference yesterday to discuss earnings. http://seekingalpha.com/article/3617...all-transcript
That is the transcript. Note: This was held for investors but it is public so anyone can hear. I've been stalking for 5 years and this is how I've kept current on the drugs, but be forewarned that the focus is the financials. I only skimmed but two things I heard of note: 1) The second generation correctors are being dosed in healthy volunteers THIS WEEK! 2) Vertex noted that it spent a lot of time picking these next generation correctors which bodes well that they really can work. Vertex had originally sa...
Source: Cystic Fibrosis Adults Forum - October 29, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Pancreatic sufficient, but losing weight
Quick recap: My DS, 12 years old, was diagnosed with CRMS because of one mutation & one variant (DF508 & 5T/12TG) and borderline sweat tests (40/41). He has chronic constipation and wasn't gaining weight steadily on a growth curve so his Dr prescribed enzymes as a "trial" to see if they would help. He did begin to gain weight but I couldn't help but wonder if he was just catching up with a normal growth spurt or if the enzymes were actually doing something. The Dr that started him on enzymes left her practice and the new Dr agreed that we could do a little testing to see if he actually needed them or not...
Source: Cystic Fibrosis Families Forum - October 29, 2015 Category: Respiratory Medicine Authors: ByGrace Tags: Families Source Type: forums
Wwyd
So I picked up my daughter after school. She says oh I don't feel good today. Started after lunch but she said she didn't want to bother me or go to the nurse because I was at work. She said she was nauseous, had a headache and it hurt to take a deep breath. No fever. Min cough. question is; got a call to see if I could work 2 morrow(I am NOT obligated to) WWYD? This stuff comes up alot and my career suffers from it but her health comes first. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - October 29, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums
gene c.3140-26a
I just found out the other mutated gene that my 2 month old son has. He has the deltaF508 and gene c.3140-26a. I think this gene falls into the Class V cartegory but I am not positive. I am wondering if anyone else has experienced this combination or can help shed some light on what Class V is. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 29, 2015 Category: Respiratory Medicine Authors: iwuvwoo Tags: Newly Diagnosed Source Type: forums
Toothpaste brands?
So been researching toothpaste brands and wonder if anyone had any input from the dentist or CF doctor related to CF issues? For instance the ingredient triclosan which inhibits bacterial growth but some studies indicate could make resistant to bacteria? What about baking soda once (for a natural anti-bactrerial impact?) Thoughts??? Thanks in advance! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 28, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
CFTR nonsense w-1204, nonsense w-1143
Chr7: 117,267,718 G>A
Pathogenic
Zygosity: Homozygous
dbSNP ID: rs121908764
Population Allele Frequency: 0.00%
Gene Impact: CFTR NONSENSE W-1204-* NONSENSE W-1143-*
Gene Impact: AC000111.6 INTRON
Hello all,
I'm a 42 year old male and I had all kinds of problems with my lungs all my life (Pneumonia half a dozen times, Bronchitis more times than I can count, and asthma. A few months ago I ordered an Asthma Peak Flow Meter and my air flow is much worse than it should be even when I do not have any asthma symptoms.
For the past several weeks I have had Bronchitis. I didn't bother going to the doctor because this typ...
Source: Cystic Fibrosis DNA and Mutations Forum - October 28, 2015 Category: Respiratory Medicine Authors: oaktree Tags: DNA and Mutations Source Type: forums
Opinions on Florida and living with CF; Doctors, Clinics, Medicaid, etc.
My daughter is almost 18 and has CF. She has been on disability for almost a year. I am considering moving to Florida from Ohio. She is trying to decide whether or not to come. I believe the more stable weather will be a benefit to her. She has been seen at Rainbow in Cleveland her entire life. I need info on the clinics in Florida. How they stand up if a lung transplant is ever required. And insurance matters. She is currently covered under her Dad's private insurance (but not sure how long) and medicaid because of her disability. This is a scary move and decision to change providers after all this time so any i...
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: 65RosesMomof2 Tags: Adults Source Type: forums
Getting fat on Orkambi
Has anyone else been gaining weight like crazy on Orkambi? I know weight gain is one of the positives of Orkambi, and I was looking forward to hopefully gaining a few pounds. I have been on Orkambi for about 2 months now, and I have gained about 13 lbs. I don't want to gain any more weight! Right now it is a little funny that I am having this problem, but I may need to get myself on a diet soon! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: liveitup Tags: Adults Source Type: forums
New collaboration for gene splicing
http://investors.vrtx.com/releasedet...leaseID=938302
this is huge! I've mentioned before out crisp and gene splicing and that they are working with vertex will get t den much faster I think because vertex knows the gene aspect and has the assay to test...likely ten years out but closer and faster every day. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
How positive have the tests been?
My son is 7 weeks old. He had a sweat test two weeks ago and it came back at 81. since then, his other tests results have been as follows:
Throat culture - normal
pancreas - well above normal and dont need to give him the creon anymore
live level - normal
white blood cells - normal
chest x-ray - clear
all other blood levels - normal.
we are waiting for them to finish the genealogy on his blood to find the other mutation and go back on wed for another sweat test.
how likely is it that he doesn't have CF or is just borderline????? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 23, 2015 Category: Respiratory Medicine Authors: iwuvwoo Tags: Newly Diagnosed Source Type: forums
Hill-rom vest for sale
Yes I completely own it. It was for my son, he passed away four years ago and now I'm strong enough to start removing the things that's no longer needed. It's in good shape and works really good. It is an older model and I'm only asking $500 + s&h so that I can put a proper headstone on my son's grave. Contact me at somonemiller@gmail.com 20140507_094206.jpg20140507_094105.jpg
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Source: Cystic Fibrosis Airway Clearance Techniques Forum - October 23, 2015 Category: Respiratory Medicine Authors: Stmiller Tags: Airway Clearance Techniques Source Type: forums
