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
Hi All. Throwing this out there to see if anyone can help. Still no CF diagnoise.
Hi Everyone. Well, I had a ambry Pancreatitis Genetic panel done. Any one else, with pancritis problems, Cf etc, which know of theses mutations. G576A, (likely pathogenic) And R668C. (Variant of unknown Significance) Got as far as a CRMS Diagnose. Told neither of these are CF causing. I don't get this as I am still in limbo, The two high sweat test> 84, and 90. To make this short as I always write a book here, I do have good FVC. Low DLCO. (which I think is heart related) Chronic Asthma, Chronic Sinusitis, Allergies, Chronic Bronchitis, Failure to thrive, malnusorption disorder (most all my life) Chronic Pancri...
Source: Cystic Fibrosis DNA and Mutations Forum - May 30, 2015 Category: Respiratory Medicine Authors: madmax33 Tags: DNA and Mutations Source Type: forums
Healthcare associated pneumonia (HCAP) and nursing and healthcare-associated pneumonia (NHCAP) are higher readmission rate and mortality than community acquired pneumonia (CAP): retrospective cohort study
(Source: BMJ Comments)
Source: BMJ Comments - February 18, 2015 Category: Journals (General) Source Type: forums
Re: Diagnosis and management of community and hospital acquired pneumonia in adults: summary of NICE guidance
(Source: BMJ Comments)
Source: BMJ Comments - February 2, 2015 Category: Journals (General) Source Type: forums
False negative sputum culture?
How often are sputum cultures false negative? My son is currently recovering from a month of sickness including sinusitis that then settled into his chest. His sputum culture was taken 3 days after he finished 10 days of amox and had just started 3 days of augmentin. His sputum was thick yellow good sample and came back normal. I suppose he could have viral pneumonia but I almost wish it was something so we could do something besides empiric therapy. He is being treated with oral antibiotic for one month now and getting better along with albuterol/pulmicort. Any insights? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - December 30, 2014 Category: Respiratory Medicine Authors: Julie7 Tags: Newly Diagnosed Source Type: forums
18 years old possible CF.
Hi,
I have had sinus issues and stomach pain for a long time now and have also coughed up sputum a lot. Recently, I have been having pneumonia due to Staphylococcus Aureus (7 times now.) and hospitalized twice. My pulmonologist send me for a sweat test and it came back as likely having CF. In my most recent hospital stay, I also had a bronchoscopy which came back containing Aspergillus Fumigatus, Candida Albicans, and Staphylococcus Aureus and the doctor mentioned my lungs kinda resembled someone with CF and in my first stay I had been diagnosed with bronchiectasis.
Anyone ever have a similar situation? (Source: Cystic F...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 28, 2014 Category: Respiratory Medicine Authors: Lookapancake Tags: Newly Diagnosed Source Type: forums
Re: Diagnosis and management of community and hospital acquired pneumonia in adults: summary of NICE guidance
(Source: BMJ Comments)
Source: BMJ Comments - December 15, 2014 Category: Journals (General) Source Type: forums
Re: Diagnosis and management of community and hospital acquired pneumonia in adults: a delayed prescription of antibiotics is not useful.
(Source: BMJ Comments)
Source: BMJ Comments - December 12, 2014 Category: Journals (General) Source Type: forums
Pseudomonas and Balancing Work & Treatment
Good morning. My 8 month old daughter had a cough for 5+ weeks and the CF clinic asked us to bring her in for a check. She dx as CRMS due to her mutations (DF508 and F1052V) and is tracked by our local CF clinic. F1052V is very rare and causes CF in some, and not in others.
Her lungs sounded clear so the doctor told us to start CPT 2x/day to see if that helped. Her theory was that this wouldn't hurt her and COULD possibly help her. They did a chest xray which showed bronchitis of some sort but no pneumonia and the doc said her lungs sounded perfectly clear.
Well...two days later I get a phone call from the nurse. M...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 11, 2014 Category: Respiratory Medicine Authors: lauryn.tubes Tags: Newly Diagnosed Source Type: forums
Re: Diagnosis and management of community and hospital acquired pneumonia in adults: summary of NICE guidance
(Source: BMJ Comments)
Source: BMJ Comments - December 8, 2014 Category: Journals (General) Source Type: forums
two copies of m470v (not one but two copies)
Hello, does anyone happen to have this mutation of two m470v. My 5 yr old was diagnosed at 3 for cf even though this mutation isn't suppose to be disease causing..
Famous words...I'm really tired of hearing that. Josiah my cfer has had pneumonia over a dozen times before age 3, 4 sinus surgeries, 2 picc lines hospitalitized 5 times last year, twice this year exacerbations every year �� we are now waiting for Ambry results, and as crazy as this sounds I really hope they find something. He's passed two sweat test, and he is pancreatic insufficient. He's on all the typical cf meds and treatment regiment. I ...
Source: Cystic Fibrosis DNA and Mutations Forum - December 3, 2014 Category: Respiratory Medicine Authors: Shellee Tags: DNA and Mutations Source Type: forums
When to call?
Good morning. My daughter has been diagnosed with CRMS. She has df508 and a mutation with varying consequences f1052v. Apparently f1052v causes CF in some, but not all it's patients. So my daughter (8 months old) is tracked at a CF accredited center and has been doing well with no symptoms to date. She got a scary high fever last month and our pediatrician instructed us to take her to Children's Urgent Care. This center is affiliated with her CF doctor's and communicated with them to ensure she was being tested for everything she should be. The doctor said she had a diminished lung (meaning it didn't sound as health...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 2, 2014 Category: Respiratory Medicine Authors: lauryn.tubes Tags: Newly Diagnosed Source Type: forums
CF testing, at 23?
Hey,
I don't know where to start with this one - first off, i'm 23. I have a lot of health problems, and also have a lot of friends with CF because of being in hospitals a lot. I've always been told I have very brittle and unstable asthma, and that because of my asthma I get lots of infections. However its got to the point where I am in hospital every few months, my lung function is rapidly dropping and we cant seam to get the infections under control. So I was referred too another hospital (Papworth) which specializes in CF/ Non-CF bronchiectasis and recurrent difficult infections. They have ran lots of tests, one of wh...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 12, 2014 Category: Respiratory Medicine Authors: Dancingintherain Tags: Newly Diagnosed Source Type: forums
exercise video for 12 yr old boy
Can people make recommendations for an exercise video/program that might appeal to a middle school age boy? PXsomething? Insanity? I've heard of these things, but don't really know much about them.
It's too icy to run outside safely right now, and jogging has not appealed to my son thus far anyway. I really want to get him on a routine that appeals to him and can be done year round. He plays fall and spring team sports, but winter and summer are sedate. Fwiw, he doesn't have CF, though like me he gets pneumonia easily. I want him to have the exercise habit to possibly help him not get bronchiectasis like me, and for endo...
Source: Cystic Fibrosis Exercise and Fitness Forum - January 6, 2014 Category: Respiratory Medicine Authors: Melissa75 Tags: Exercise & Fitness Source Type: forums
NG Tube Trouble
I'm in the hospital for pneumonia, waiting for transplant. I had an NG tube placed Friday, but it hurt my throat like crazy. Then early Saturday morning I gave one solid cough, and it came out. The thing was still secured in my nose, and a loop of it was sticking out my mouth. I got another one today (Monday) but wondering if anyone else has had this and has any advice for keeping this one in??? (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - September 17, 2013 Category: Respiratory Medicine Authors: chris27rocker Tags: Transplants Source Type: forums
