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
Traveling Abroad
I've recently just applied to travel abroad to Thailand with my school but have never before traveled outside of the US. Does anyone have any suggestions on how to safely get all meds on the plane, through security, etc. Or any other good travel tips.
Thank!!! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 8, 2015 Category: Respiratory Medicine Authors: Jriet Tags: Adults Source Type: forums
Weight Lifting
I've heard weight lifting can help with lung function and improving PFT scores. I'm just not sure what type of weight lifting exercises I should be doing...please help! (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - September 8, 2015 Category: Respiratory Medicine Authors: Jriet Tags: Exercise & Fitness Source Type: forums
In Need o Help Right Away
I have been on this site a few years ago and have decided to return because I am in great need of help, guidance and advice.
MY SITUATIONS:
I am a 29 year old female from California. I have cystic fibrosis, cystic fibrosis related type one diabetes, I had a double lung transplant 5 years ago and now have numerous transplant complications including 2 types of aggressive skin cancer, cataracts (now currently being treated), chronic pain, osteoarthritis and chronic pain. I have a college degree in anthropology, work as a freelance writer and in customer service and work as a volunteer for several different organizations.
...
Source: Cystic Fibrosis Adults Forum - September 8, 2015 Category: Respiratory Medicine Authors: anthro9310 Tags: Adults Source Type: forums
How do you know when you need IV antibiotics?
I have posted here before about my two sons getting diagnosed in their teens a few years ago. Because we did not go through the normal learning curve with CF, there is some basic knowledge that we do not have. This is one of these instances.
My older son, age 20 is having an exacerbation. He has never been hospitalized (for anything, let alone CF). He has been on cipro over 3 days with no positive effect yet. He is using his vest 3 hours a day, and is coughing too much to sleep at night. When we called the doctor, he said all we can do now is take him to the ER if we want to. My question is -- what is bad enough ...
Source: Cystic Fibrosis Adults Forum - September 6, 2015 Category: Respiratory Medicine Authors: fel Tags: Adults Source Type: forums
Help with constipation
I've been using MiraLAX once a day and still pretty blocked and hard stools, is anybody else using something different I'm only going like once or twice a week. I'm so bloated and uncomfortable. I need some other methods thanks (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - September 6, 2015 Category: Respiratory Medicine Authors: missmary083 Tags: Pregnancy Source Type: forums
Looking for a thread started by a dad
The dad was lamenting that his young son had lost 40 points PFT in between office visits.. I think it was about two years ago.
Thanks for any one who can help me find the thread.
Salt and Light,
Jeanne (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - September 6, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Families Source Type: forums
Highest FEV1 ever?
What's the highest % of predicted FEV you've ever had? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 5, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Looking for more information.
If I test positive for one copy of the R117H-7T mutation and 7T. Does this mean I have Cystic Fibrosis? I was told I am a carrier of the gene. I will not get into see a doctor for another week to discuss results. I am concerned and hoping for more information, if possible.
Thank you! (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - September 5, 2015 Category: Respiratory Medicine Authors: MattieG Tags: Newly Diagnosed Source Type: forums
