Trying to figure out how accurate the sweat test is before tomorrow
My son is 6 months old. Since he was born something has always felt a bit "off" for lack of a better word. His stools have always been bright green with mucus, he's had a chronic cough that is consistantly getting worse, he was always crying until about a month ago, he's always breathed funny, and he is always congested. I've been to several doctors, most of whom blew me off and told me it was a milk allergy or reflux. I tried reflux meds and a total elimination diet at first for months but neither helped. Finally I found a pediatritian who listens to my concerns. She sent me to a GI specialist who didn't feel li...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 15, 2015 Category: Respiratory Medicine Authors: aleutenberg Tags: Newly Diagnosed Source Type: forums
Allergic reactions to Antibotics
Hi.. I have posted before that last Oct. a year ago this month, my grandson had a terrible reaction to the antibiotics the doctors believe it was the cefepime and possibly the vancomycin. He had steven Johnson syndrome, I cannot tell you how terrible it was for my family but most of all for Connor. He did recover and we do feel lucky because it could have been a lot worse he responded to the steroid treatment, but it took over a month for him to recover.
Since that time my grandson Connor has had a reaction to 2 other antibiotics. He has a allergist that follows him, a derm specialist and his CF team. The docs told us C...
Source: Cystic Fibrosis Families Forum - October 13, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums
New Site Coming Soon
Hi my friends!
As I was reading through the threads this morning (my initial activity for the last 20 years!) I came across CFinTX question and I thought this would be a good time to reply to his question about the Pyrtze email sent out so here goes:
Great Question CFinTX!
Back in 1996 when I bought the domain: CysticFibrosis.com and (my partner had CF), I imagined a center for everything CF.
That would include patients, caregivers, family members, partners, HCPs and Industry Leaders.
We started with pretty simple message boards. The threads were entitled Patients and Families.
In 2003, we got ...
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums
DIOS prevention options
Hi everyone,
I've been struggling with intermittent DIOS now for several years. Previously I was using a cap of Miralax daily as a preventative. However, ever since I was treated with IVs over the summer, my bowels have not been the same. Now I cannot tolerate Miralax at all - I get severe gas and bloating with frequent BMs. Is there any alternative to Miralax for DIOS prevention?
Thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums
Anxiety on Orkambi?
Hello all- I was wondering if anyone else on an anti-depressant or anxiety medication is experiencing anxiety or mood cycling on Orkambi? I am prescribed 10mg of escilatopram (Lexapro) for generalized anxiety, and have not had issues for years. However, I noticed within the first week that I have had extreme issues with anxiety attacks, constantly feeling nervous or jittery, and mood swings.
I understand that there is a moderate interaction there, but it almost feels as if I went 'cold turkey' off my meds, and I even experienced minor brain zaps one morning. I tried doubling my dosage for one week (taking 1 20mg pill ...
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: sheanna Tags: Adults Source Type: forums
has the system been down????
I have not seen a new email post in weeks was the system down? Also I went to 4 different sites before I found my friends... I was starting to panic
Will now log on to adults to see what I have missed... (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: windex125 Tags: Adults Source Type: forums
Pertzye?
I got an email today from CysticFibrosis.com promoting this drug but I have never heard anything about it. Anybody on it or heard of it that can share more? Looks to be maybe an alternative for enzymes. I'm currently on Creon's but don't know if this would be considered an equivalent or an additive.
http://www.pertzyecf.com/
Also, unrelated, this is the first time I've gotten an email like that from CF.com - do they typically promote drugs like this or is this just a new marketing tool they're trying to take advantage of? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: CF in TX Tags: Adults Source Type: forums
Super dry cough at night
Has anyone else ever had a bad dry cough at night? It doesn't wake me up. It's when I wake up to go to the bathroom. My chest is super tight and then I start coughing until I bring something up or move the junk around which is usually really thick at night... I am also 5 mths pregnant which could be some of the problem. I also have asthma to. Any suggestions on how to help would be great thanks. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 12, 2015 Category: Respiratory Medicine Authors: missmary083 Tags: Adults Source Type: forums
Orkambi works even if FEV doesn't improve
I know I'm tracking carefully what people are saying about Orkambi and specifically the FEV improvement. The Vertex conference noted one of the presentations at the NACFC which showed that there was no correlation between the FEV improvement at a specific point and reduced excerbations. In other words, even if FEV isn't improving, Orkambi is still reducing excerbations.
Here's the poster presentation: http://www.vrtx.com/assets/pdfs/conf..._Poster241.pdf
Something to keep in mind if you aren't seeing an FEV improvement and think it's a waste of time, money, etc. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 12, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
back to upmc
Im headed back to hospital in Pittsburgh after just getting out two months ago my lung function dropped 15% and really hard to breathe I hope they get me fixed this time I think this is the hardest year i have had in my life Im losing hope in getting any better its just been one decline after the next and now hard to walk to bathroom without being short of breath im just not ready for this im sorry bein so negative but I just cant see a way for it to get better I need to accept it I guess but its hard to know where it eventually goes thank u for this forum to let me vent and to everyone with cf make sure u make most of hap...
Source: Cystic Fibrosis Adults Forum - October 10, 2015 Category: Respiratory Medicine Authors: cam Tags: Adults Source Type: forums
Vertex Conference Live Now--triple combo gets up to 75% function
I'm in tears watching the slides. The 3 drugs combo gets in vitro CFTR function to 75% function. Orkambi only to 25%. Kalydeco...that miracle for 551...only got CFTR function to 50%. And for heterozygotes to almost 50%, which again is what Kalydeco did for 551!
vrtx.com has link if you want to watch, listen (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 10, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
A RespirTech Incourage System - For Sale - Northern New Jersey
Back in 2005 I was diagnosed with Plastic Bronchitis and given a respirtech incourage system to help with pt. From the beginning it has made me feel sick when using therefore I have only used it a few times. I would like for someone who could really use it to have the benefits of the machine instead of it sitting in my closet. I do want to sell it but at a fraction of the cost. Interested in all reasonable offers. Or if anyone has any advance on how to go about Back in 2005 I was diagnosed with Plastic Bronchitis and given a respirtech incourage system to help with pt. From the beginning it has made me feel sick ...
Source: Cystic Fibrosis Adults Forum - October 8, 2015 Category: Respiratory Medicine Authors: jkleiser87 Tags: Adults Source Type: forums
links to live updates for NACFC?
I they broadcast some of the sessions, but anyone know whose posting updates/slides/summarizes live of the NACFC?? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 8, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Second generation correctors + df508 heteros updates
Just released:
http://investors.vrtx.com/releasedet...leaseID=935806
Second generation correctors in healthy volunteers next month. 2016 in trials with triple combo for both ddf508 and heteros df508!!! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 8, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Venting
Hello everyone. I started this new school program which is 40 hours a week and 20 hours in driving and homework= total 60 hours. I am exhausted and am waking up at 5am every day. Last time my pfts were 76 percent and I could breath well. My pfts must be down about 5 percent because Im to the point where Im struggling to walk up a slight hill with a back pack. I don't even want to put food in my stomach because the extra weight is making it even more difficult to breath. Ive been coughing up blood as well. In the 30 years of me being alive, I have never struggled like this to breath. I have no choice to keep pushing forward...
Source: Cystic Fibrosis Adults Forum - October 8, 2015 Category: Respiratory Medicine Authors: kmhbeauty Tags: Adults Source Type: forums
