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
anxiety about hemoptysis
Hi all,
I've struggled with general anxiety off and on, so I know part of my fear is related to that. But I often have a lot of anxiety about having an episode of hemoptysis. I had my first hemoptysis while I was at work a few years ago and really freaked me out. I luckily got it under control and snuck out of work a little early without anyone really noticing anything was wrong. But I was quite shaken up by the experience, especially because I felt so alone at work by myself. Then over this past summer, I woke up in the morning to a bout of hemoptysis. I felt lucky to have been at home when it happened where my spouse wa...
Source: Cystic Fibrosis Adults Forum - November 25, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums
A New Home for CysticFibrosis.com!
We have been working hard behind the scenes creating our NEW WEBSITE!
Every few years, we bring everything to new software.
It is an amazing journey!
2016 is our 20th YEAR~
Here are some stats you may find surprising!
Registered Users: 17,584
Forums: 28
Topics: 150, 231
Replies: 820,309
We have only kept records since 2003....so these are searchable conversations.
Watch this space!
Salt and Light,
Jeanne (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 24, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums
ABPA + Lung infection = pulse dose of steroids + IV antibiotics..
Has anyone been on a "pulse" dose of steroid to help with antibiotics/abpa? It seemed to do some good, but holy crap was that an awful experience. The dose in the hospital made me incredibly awake and wired. I slept for maybe 3 hours each of the three nights, and then I was released shortly after the third dose to resume my antibiotics at home. It was brutal just trying to get my brain to work to get medications together and get my way home.
I cultured my typical pseudomonas (and something new), with a huge drop in lung function and x-ray that showed a large portion in my large airway covered in a giant mucus pl...
Source: Cystic Fibrosis Adults Forum - November 23, 2015 Category: Respiratory Medicine Authors: Dank Tags: Adults Source Type: forums
Nebulized Colistin & Join Pain?
Hi Everybody,
For those of you who nebulize colistin, have you noticed any joint or tendon pain?
I neb it every other month, and I've begun to notice that 2-3 weeks into the months I'm on it I start getting pain in both my hips and shoulders.
I'm wondering if it's related to the colistin. Any insight anyone?
Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 21, 2015 Category: Respiratory Medicine Authors: Nervous1 Tags: Adults Source Type: forums
I'm 36!
Holy Cow! I'm 36 today, folks! PFTs 96%. STILL GOING! CF WON'T TAKE ME DOWN JUST YET!
<3 (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 20, 2015 Category: Respiratory Medicine Authors: welshwitch Tags: Adults Source Type: forums
Wearing masks in public may help wearer from getting flu
For anyone who has heard of the sudden decline of CF patients after getting a mild cold or flu, some to the extent that they are now on ventilator, I believe it is imperative to wear a disposable mask in public places such as the grocery store, mall or hospital during flu season. Who cares if people look at you funny? Better to get curious glances than end up on ventilator. Our lungs are fragile and deserve protection.
Advice from mayo clinic:
Should I wear a flu mask to protect myself from the flu?
Answers from James M. Steckelberg, M.D.
It can't hurt and it might help. Some studies have shown that using a surgical ...
Source: Cystic Fibrosis Adults Forum - November 20, 2015 Category: Respiratory Medicine Authors: ladybird Tags: Adults Source Type: forums
Working on disability - SSDI
Can anyone relate recent experience with working while on SSDI? Have you been audited by SSA as a result? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 20, 2015 Category: Respiratory Medicine Authors: ladybird Tags: Adults Source Type: forums
Fascinating back story on vertexs step into cff
http://www.bizjournals.com/boston/bl...html?ana=yahoo (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 19, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
long term linezolid
Hi, I'm new to this forum. I don't have cf, I have bronchiectasis, but I have had mycobacterium abscessus for 2 years, and intermittent pseudomonas, so many of the threads here are very relevant and useful to me.
I've had various iv regimes and am currently on imepenem and tigecycline with azithromycin.
I specifically want to ask for experiences people have had using linezolid.
I've had it for short periods ( 4 weeks at 600 mg a day) and sense that it helps ( sensitivity is intermediate) My physician is very cautious about side effects (which I like) and he's reluctant for me to h...
Source: Cystic Fibrosis Adults Forum - November 17, 2015 Category: Respiratory Medicine Authors: carolinen Tags: Adults Source Type: forums
the recalls we never learn about!
So a couple weeks past when getting a new delivery of drink supplement the coordinator discovered that there was a recall covering the product we had, but thankfully it wasn't the lot we had at home. From our discussion it sounded like medical supplies etc are usually handled from the suppliers and thus not published more broadly, so I went to fda.gov to request email updates of various recalls in the event. A couple days ago the following came through. This looks like it's been an issue for years and who knows what the hospitals/clinics are doing. Augh.
Endoscope Washer/Disinfectors by Custom Ultrasonics: Safety Com...
Source: Cystic Fibrosis Adults Forum - November 16, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Pseudomonas Aeruginosa Erradicated
I was wondering if anyone on this board has ever known or heard of anyone diagnosed with CF getting Pseudomonas Aeruginosa and then completely eradicating it through antibiotic treatment (verified by a specimen via bronchoscopy)? Thank you. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 16, 2015 Category: Respiratory Medicine Authors: zumiestar Tags: Adults Source Type: forums
Cystic fibrosis smartvest airway clearence vest machine
Selling 2 BRANDNEW ( Barley Used) SMARTVEST Machines
Asking 7,500 a piece!
OBO
Comes with
- Vest machine
- vest ( teal, or purple)
- Carrying case
- hose
- user manual
One vest has only 65 hours on it
unsure of the second
*** EMAIL FOR MORE DETAILS ***
I do have paypal, and am able to ship anywhere, may asking for shipping depending where you live.
Email- Aprillynn2195@gmail.com
US ONLY CAN TEXT 717- 404-7054
Attached Images
2.jpg
(48.7 KB)
1.jpg
(48.9 KB)
3.jpg
(35.5 KB)
4.jpg
(34.0 KB) (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 13, 2015 Category: Respiratory Medicine Authors: Aprillynn921 Tags: Adults Source Type: forums
Surviving on Disabilty
I've always been one of the "lucky ones" with mild CF. Of course things have declined over the years, but last year I was still doing well for a 36 year old with CF. In 2014 my FEV1 was hanging out in the low 70s. Then I caught a bad bug September 2014, and within 3 days I went from being healthy, to laid out in the hospital for 3 weeks, on oxygen for the first time ever, with an FEV1 of 51%. I've been struggling ever since. I had another drop and round of IV antibiotics in May, and my FEV1 now ranges from mid 50s to mid 60s. I tried to return to work afterwards, but between the exhaustion and shortness of breath...
Source: Cystic Fibrosis Adults Forum - November 12, 2015 Category: Respiratory Medicine Authors: Starfall99 Tags: Adults Source Type: forums
Interesting new clinical trial for 661/Kalydeco
Was checking to see if next generation details were at clinicaltrials.gov and didn't find but discovered this study, which I hadn't been aware of:
https://clinicaltrials.gov/ct2/show/...lmonary&rank=1
It is a small study for 661/Kalydeco, not the Phase 3 for homozygotes going on now, but a Phase 2 looking at "extrapulmonary systems." Primary end point is mucociliary clearance, and secondary endpoints include (beyond FEV), change in gastrointestinal pH, change in sweat chloride, change in nasal potential difference.
This is interesting to me because the FDA at the Orcambi discussed (if I recall correctly) t...
Source: Cystic Fibrosis Adults Forum - November 9, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
