Just one day off
So was at the hair salon (woops, typo, but now THATwould be nice!) and overhearing the ladies next to me chatting about one lady whose son just started football and they practice everyday and even though it's just up the block, the drop off and pick up just is constant and "oh, can't we just have one day off."
They. Have. No. Idea. How blessed they are. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 19, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
long term hospital stay
I was in upmc for a month had pnemonia and mucus plugs and my pfts went down by 20% culured mersa and b cepicea amd phsudo had bronc scope and had a bad reaction to it got a fever a high one that couldn't get down for couple days got confused amd really scared but it broke and they got out 2 mucus plugs out I was on fortaz iv and televansin in and another iv I forget the name but was one they always give me I got out bout 4 weeks now getting legs back was hard lost alot of wt and mucle got pft back to base but went for check up pft back down some and having short of breath and streaks of blood in mucus this just started fe...
Source: Cystic Fibrosis Adults Forum - September 19, 2015 Category: Respiratory Medicine Authors: cam Tags: Adults Source Type: forums
spacer brand
any comparator between optichamber and vortex? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 18, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Bronchial dialator question
Stupid question (again). How does chronic treatment with bronchial dialator's help those with CF? My understanding is it opens the airways. But what does it do for CF? I mean it doesn't think the mucus...and if there is no excerabation or shortness of breath, what is the way that it works prophelatically?
The reason I'm asking is this: We do 2x a day. Occassionally, if DS is coughing more than baseline (like after a day outside with lots of polland), I might do 3x. So what I want to discuss with the doctor is whether it makes sense to always do 3x a day (I would do the mid-day one with an inhaler and not nebulize...
Source: Cystic Fibrosis Adults Forum - September 17, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Pancreatic Issues and Orkambi
So I am having stomach issues since I started taking Orkambi. It seems that when I increase my dosage of zenpep these issues subside on their own. Yesterday, I asked my doctor if I could up my dosage of zenpep, currently 13 per meal, by 1 or 2 pills and was told that I could not. His response was that I would go over the maximum amount of Lipase per day and would scar my colon. However, I have done some research on my own today and have found that the dosing info says 2,500 units of lipase per kg per meal OR 10,000 units of lipase per kg per day. If I use the daily calculation I still have another 11 pills I could actually...
Source: Cystic Fibrosis Adults Forum - September 16, 2015 Category: Respiratory Medicine Authors: brad.johns Tags: Adults Source Type: forums
Where to find "generic" Kalydeco
Hello dear friends,
A close friend of mine has one of the gene mutations to be treated with Kalydeco but is not available here in Chile (and even if it was, the financial aid or insurance coverage for this kind of medication is non-existent here and way out budget for almost any family).
We have heard there might be some "generic" versions being produced and sold in Israel, India and China, but so far we haven't been able to find a reliable contact.
I would really appreciaty any kind of information that might help us find a reachable option.
Thanks in advance
Sebastian (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 15, 2015 Category: Respiratory Medicine Authors: aifenua Tags: Adults Source Type: forums
scholarship info
In placing an order earlier I was chit chatting with the agent based on my .edu email address and he shared with me some info for scholarships, which I'm posting here too:
The scholarship award information, criteria for the scholarship, application process, and deadline for submission are provided at http://www.vitalitymedical.com/scholarship. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 15, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
More exciting research to fix cftr
Proqr
http://finance.yahoo.com/news/proqr-...110000137.html (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 15, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
constant sinus drainage after lung transplant
I had a lung transplant (and liver) in late 2012. I had sinus surgery in December 2013. But I have constant mucus buildup and sinus drainage 24/7. I blow my nose several times a day and cough up stuff often that I know is from the sinus drainage. I do sinus rinses at least once a day, every day along with nasonex every day. I don't want this to cause an infection. I feel like this is getting worse and my ENT just says its CF and doesn't do anything about it (although he does clean out my sinuses when I see him). Does anyone have any remedies to decrease the amount of mucus buildup in my sinuses? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 14, 2015 Category: Respiratory Medicine Authors: randomgirl Tags: Adults Source Type: forums
Help Please: 50 psi recommendations
What 50 psi compressor do you use/have you used? Pros/cons, etc? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 14, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Own your own health records?
only in New Hampshire!
It is a beginning...for patient self management!
http://www.xconomy.com/san-diego/201...-patient-data/
I love Eric Topol...Hope I can meet him someday soon!
Salt and Light,
jeanne (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 14, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums
Transcript from FDA Advisory Committee Meeting for Orcambi
Is finally available on line here:
http://www.fda.gov/downloads/Advisor.../UCM455654.pdf (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 12, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Looking for Stock photos for fundraising
I am looking for a few photos to download for our CF walk. In the past, to promote awareness I would use a photo of my daughter. I think she would prefer a generic photo of a logo from the CF foundation or purple ribbon and I am having trouble finding something. Help? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 12, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums
strange question about chairs for vest users
My adult son uses an airway clearance vest 2 times a day. He is pancreatic sufficient and not on the skinny side. He needs to sit at a desk while he does the vest so he can do nebs (and look at a computer screen to ease boredom) at the same time. Anyway, with the oscillation of the vest, he has so far broken 4-5 different chairs. Some break while he is on the chair, and some break several days or months later. Several of them were Danish modern quality chairs made of teak from a high end furniture store. Several of them were less expensive chairs with caning. It seems that any chair with joints that can come apart ...
Source: Cystic Fibrosis Adults Forum - September 11, 2015 Category: Respiratory Medicine Authors: fel Tags: Adults Source Type: forums
Stupid spirometer question
If a spirometer is properly working (sincroniced or whatever its called/spelled), is it possible for it to wrongly record a too high number based on a child's improper technique? I can see a low number being wrong or not an accurate assessment because the technique is wrong, but is it possible for a high number (that isn't repeatedable, because of youth and inability to consistently do a good technique), to be wrong or inaccurate based on technique? Or can you assume if there are 6 blows and one is high and the others all low, the high is the "correct" one and the lows are based on inconsistent/inaccurate techn...
Source: Cystic Fibrosis Adults Forum - September 10, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
