Which is the best Ambry Genzyme quest or someone else?
Just got back results from Ambry . Had cftr full gene and cftr del/duo done on my husband. Came back in11 days with nothing found not even the M47OV which my daughter has and I don't . I am not happy with this Ambry testing since we have hers and mine and we're trying to find what she hot from him (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - December 3, 2015 Category: Respiratory Medicine Authors: aqua8522 Tags: DNA and Mutations Source Type: forums
Support for genetic testing with negative sweat test
I know we often say you can have a negative sweat test and still have cf and have noted several here have had that happen and have recommended posters to push doctors for genetic tests when cf symptoms but negative sweat test. But it sounds like the doctors don't buy it...well in searching for something else I found this from cff.org
https://www.cff.org/PDF-Archive/Diag...trics-2007.pdf
Guideline 16 summarizes this point with a reference to a journal article. So those pushing for genetic testing based on symptoms this might help. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 3, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
should I push for testing?
Ok, I have never done this before, but I need some advice. A little bit of history-my husband(27) had very frequent lung infections as a child. His bedsheets always had a salt residue on them from his night sweats(which he still has). They had him tested for cf, but his results were borderline, & he was never retested. The summer before we got married(he was 20 years old), he ended up in the ER for diagnosed pleurisy. From that point on, he has had a chronic cough, & allergy symptoms that don't ever go away. Fast forward to current. He is exhausted. He can't sleep at night, & his sinus infections will not go aw...
Source: Cystic Fibrosis Adults Forum - December 2, 2015 Category: Respiratory Medicine Authors: themrsstacey Tags: Adults Source Type: forums
Need advice from more experienced parents
Hi All,
My daughter has been doing really well up until a couple of months ago. Her PFTs started dropping. She just finished a course of Augmentin as she was culturing an abundance of staph. PFTs stayed the same. Had a CT scan which shows loss of elasticity and some scarring in the lower lobes. Is going in next week for a PICC and IV antibiotics and intense chest therapy. She is in the Orkambi trial and, thankfully, I believe it has helped her maintain a healthy weight. She was in hospital two years ago at this time and she looked very sick. Today she is pink, active, has a healthy BMI, o2 at 98%.
My fear is tha...
Source: Cystic Fibrosis Families Forum - December 2, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums
Diagnosed at 36
Hi everybody,
I joined the forum when i was diagnosed with cystic fibrosis this summer, but for some reason I couldn't post under my old screen name.
I was diagnosed in July after my pulmonologist did a full panel of bloodwork. I had previously passed 2 sweat tests. I have moderate bronchiectasis and am culturing m. absessus. I spent 4 weeks on iv antibiotics this summer and got pancreatitus as a side effect. This was my drs big hint.
As i said in the title i am 36yo. I had no idea anything was wrong with my lungs till i got pregnant with my now 4yo son(carrier-d1125h). At 5 weeks pregnant i had my first and only re...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 2, 2015 Category: Respiratory Medicine Authors: alikat0079 Tags: Newly Diagnosed Source Type: forums
Singing and lung disease
http://paidpost.nytimes.com/philips/...e&action=click (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums
Vibralung..where can I find it? And for how much?
Hi all,
I was wondering if anybody knows where I can find the Vibralung device for airway clearance? I tried contacting the company more than once but had no answer. I found it through an online retailer but it is sold for $5000 which I feel is too much after going through some posts in this form that discussed its pricing.
I am visiting the US in about 2 weeks and would love to buy one for my daughter after reading great reviews about it.
Any help would be really appreciated.
TIA (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - December 1, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums
Giving Tuesday!
We are getting ready to launch our new site...which the HOLs agree is wonderful!
At cysticfibrosis.com we have been CF Awareness for 20 years from the patients up!
Through our CFTechnology.org 501 C 3 we can give away technology and we are always about education! We have been approached from clinics all over the world...needing technology and supplies.
So if you are looking for a place to give today...
Donate
And WATCH for our new site...it will surprise you!
Thank you!
Salt and light,
Jeanne (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums
Need ideas
Im on the great strides advisory committee for my local CFF chapter. I have a meeting tonight and am looking for ideas to pass along. Its been noted that most of great strides participants are families that have children with CF. Therere a lot of activities at the walk that are focused on kids, so this makes sense. Does anyone have any ideas on how to increase involvement of adults with CF? Of course, the infection control restrictions make this especially challenging. Ideas dont have to be focused on great strides event. Any ideas to actively engage and encourage adult involvement in fundraising are welcomed. (S...
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: jricci Tags: Adults Source Type: forums
Please help! Possibe CF? Sweat test needed after rectal prolapse in 2 1/2 year old
Hello,
This is my very first time posting here. I never thought I would find myself posing questions in regard to CF and my children, as I thought any fear of CF would have been completely put to rest by my prenatal testing and newborn screening. Apparently, as I am learning, this is not always the case.
I just got back a little while ago from an over night stay at a children's hospital following my daughter's first experience with rectal prolapse.
After speaking with the gastroenterologist at the end of her 24 hour observation period, I learned that it is protocol to send children her age with rectal prolapse for a s...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 1, 2015 Category: Respiratory Medicine Authors: Drai5 Tags: Newly Diagnosed Source Type: forums
hill rom vest
I have Hill rom vest model 105 I need to sell. I have 2 vests, size child large in blue and adult small in pink. It comes with travel/storage bag, manual and extra hoses. It has 735 hours of use on it and works great. Email if interested threeeades@aol.com. (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - November 29, 2015 Category: Respiratory Medicine Authors: Melissa.eades Tags: Airway Clearance Techniques Source Type: forums
Cayston
I have a 23 day supply of Cayston. If anyone wants it, PM me.
Bill (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - November 29, 2015 Category: Respiratory Medicine Authors: Printer Tags: Families Source Type: forums
job
hi,
i,m new to this. just a quick question, do any of you pwcf work in construction? im apprentice carpenter at the moment, but i have been told by my doctor i had to give up cos of dust. so i am wondering any of ye out there are carpenter or builder or construction worker?
thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 28, 2015 Category: Respiratory Medicine Authors: Nicholas O'Halloran Tags: Adults Source Type: forums
Cayston
I have a 23 day supply of Cayston with a exp date of 3/17. If anyone wants it send me a PM.
Bill (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 27, 2015 Category: Respiratory Medicine Authors: Printer Tags: Adults Source Type: forums
nasal polyps and deviated septum
I just went to the ENT Dr. on Monday because I've been having obvious signs of polyps. I can't breathe from my nose at all. It sounds like I have a cold because the polyps are blocking my airway. I've had polyps removed at least 3 or 4 times in the past 6 years. Dr. has mentioned they will always grow back even after removed. Just a matter of WHEN. Mine grow back about every one and a half to two years but this time they came back within only a year. I had surgery around this time last year. Dr. said he has the ability to remove polyps in his office but he couldn't do it with me because my nose is too narrow. He said becau...
Source: Cystic Fibrosis Adults Forum - November 27, 2015 Category: Respiratory Medicine Authors: beautifulsoul Tags: Adults Source Type: forums
