Hill Rom Vest 105 for sale
I have a hill rom vest for sale for $2500.00 It was barely used. (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - August 25, 2015 Category: Respiratory Medicine Authors: Lacey Long Tags: Airway Clearance Techniques Source Type: forums

Very sad/strange story here in San Antonio
http://www.ksat.com/news/corpse-taken-from-funeral-home Julie (25) passed away from complications with cystic fibrosis. Her body was stolen from the funeral home after her service on August 15th. Her poor parents are beside themselves. :( Hoping and praying they find her soon. Autumn (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 24, 2015 Category: Respiratory Medicine Authors: triples15 Tags: Adults Source Type: forums

Orkambi Journey with 19 y/o Allan Diagnosed at 4 months
I really wasn't sure how to do this. I am the father of Allan. He is a bit shy to post his own thread and definitely not a YouTube video. So here I come. Hope its Ok to start my own thread. You may post in here and ask questions if you wish, if you have CF, a parent of a child with CF or just curious about CF. I am an open book. I can only put in this thread of what my son tells me. He knows this is being done and I do have his consent. So just a tad bit of background on Allan. He is 19 y/o and he was diagnosed at 4 months old by a Doctor here in Texas. His Normal FEV1 is usually around 85% on a good day. Had a bout of ...
Source: Cystic Fibrosis Adults Forum - August 24, 2015 Category: Respiratory Medicine Authors: Allansarmy Tags: Adults Source Type: forums

tri verus quad flu shot
Flu shots are available now. I discovered a couple years ago you can get one that covers 3 or 4 strains, but you need to ask for the 4-strain one. Probably a "marketing" gimmick, but figured the broader protection the better. The "Quadivalent vaccines protect against 4 strains of the flu, A/H3N2, A/H1N1, and 2 strains of influenza B." The trivalent ones only cover 1 strain of influenza B. I always call ahead to see if the pharamacy has the quadivalent one. fwiw (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 23, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

For people my age
My name is Brandon Justice and I'm from Texas, I'm delF508 homozygous and I'm 20 years old with an Fev1 of 89%. If any of you need someone to talk to, please visit my blog brandoncysticfibrosis.wordpress.com I give updates on my life, how I stay in shape, and how I went from a downward spiral to the healthiest I've ever been. If if any of you have blogs I'd love for you to post your URLs here if not please visit mine and feel free to comment. Thanks y'all. (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - August 23, 2015 Category: Respiratory Medicine Authors: Brandon Justice Tags: Teenagers and Young People Source Type: forums

Good Probiotic?
I use Plexus Pro Bio. It's the best probiotic for combatting thrush and keeping my gut healthy that I've found. Anyone have suggestions? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 22, 2015 Category: Respiratory Medicine Authors: Brandon Justice Tags: Adults Source Type: forums

CrossFit
I'm pretty new to the forums and I know a lot of you don't know me, but take this from someone who has done just about everything airway clearance wise, crossfit is the best method by far. Starting is one of the best decisions I've ever made. Let me know if you have a method you're a strong believer in and take a look at my blog. brandoncysticfibrosis.wordpress.com (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 22, 2015 Category: Respiratory Medicine Authors: Brandon Justice Tags: Adults Source Type: forums

Orkambi Success
I'm delta F508 homozygous, I'm 20 years old with an FEV1 of 89% and it's all thanks to Orkambi. I've been on the drug for 2 years through its clinical trial phase. Trust me everyone, it's a miracle. Diet and exercise and certain health and wellness products along with Orkambi is key to your success. Take a second to run past my blog brandoncysticfibrosis.wordpress.com I started it yesterday so folks who are interested can track my journey and know that Orkambi not only works, it blew away all of my expectations. My lung function has shot up 14 points in 2 years and this is after a steep down trend. The benefits are there a...
Source: Cystic Fibrosis Adults Forum - August 22, 2015 Category: Respiratory Medicine Authors: Brandon Justice Tags: Adults Source Type: forums

Chest pain when breathing deep and coughing
Has anyone experienced sharp chest pain when breathing deep or coughing (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 22, 2015 Category: Respiratory Medicine Authors: Teri Di Biase Mundt Tags: Adults Source Type: forums

Error message hill rom vest
Ds' vest just stopped, had a message 7 call for service. Unplugged and restarted. Anyone have this message before. Course it's after hours, on a weekend and I'm at the family lake cabin. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 22, 2015 Category: Respiratory Medicine Authors: Ratatosk Tags: Adults Source Type: forums

Negative sweat test but lots of mucus
Well our 7 year old daughter came back negative on sweat test. Which is a relief but leaves me puzzled. My neice is a carrier. We just found that out. My daughter has to "heeeave" throughout the day, every day, to work up the mucus and spit it out. It is just part of our daily life. I just don't know what else would be causing all this chest mucus? Any ideas? I hear it is very rare to get false negative on sweat test, even for an atypical cfer. Perhaps her original diagnosis of asthma is correct? I just don't know. We've watched videos of asthma and CF on YouTube together. The asthma videos she says "...
Source: Cystic Fibrosis Newly Diagnosed Forum - August 20, 2015 Category: Respiratory Medicine Authors: Janae Warren Tags: Newly Diagnosed Source Type: forums

"Normal" for CF kids
DS loves pretend play. This morning while wrapping up some work stuff he came in and showed me "Caterpillar's medicine he got from Walgreen's so he doesn't cough when he runs." He had taken a toy, stuck it in an envelop and is stabling a "label" on the outside with various Caterpillaresque prescription names. He. Melts. My. Heart. Every. Single. Day. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 19, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

carrier with symptoms
I am 44 yo mother of 2 DD (one with DDF 508 and other with 1 D F 508 and 1 3120 G-A). I have been having respiratory issues and PFTs at about 43%. My family dr says maybe it's because I am a carrier (I have to carry the DF 508 as it's the one both my girls have despite different fathers). Any suggestions of where to go from here? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 18, 2015 Category: Respiratory Medicine Authors: heather1 Tags: Adults Source Type: forums

R117H, original carrier diagnosis but should we retest?
My son is 3 years old and has a single r117h 7t gene. at 3-4 wks we did the sweat test and it came back normal around 14. At the time I never thought he was salty tasting. we actually didnt even know he was a carrier until a year and a half later when we continued to have loose stools and I came back to having to do the sweat test and requested the documents of his newborn screening. Suprise to me, I did not know that my state automatically tested for common mutations after a high IRT level. Fast forward and over the last 2 years he has seemed to taste saltier and saltier. So much so that if he sweats at all its like licki...
Source: Cystic Fibrosis Newly Diagnosed Forum - August 18, 2015 Category: Respiratory Medicine Authors: aphillips Tags: Newly Diagnosed Source Type: forums

Anyone willing to do this?
I have an idea for cf awareness and donations. Basically piggybacking on the ALS challenge, having a "CF Puddin' Dump Challange". I feel the use of pudding (mucus) represents CF the best. Anyone willing to do this challange? Or have any ideas to add? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 17, 2015 Category: Respiratory Medicine Authors: jcro125 Tags: Adults Source Type: forums

Anyone willing to do this?
?????????? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 17, 2015 Category: Respiratory Medicine Authors: jcro125 Tags: Adults Source Type: forums

Anyone willing to do this?
I have an idea for cf awareness and donations. Basically piggybacking on the ALS challenge, having a "CF Puddin' Dump Challange". I feel the use of pudding (mucus) represents CF the best. Anyone willing to do this challange? Or have any to add? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 17, 2015 Category: Respiratory Medicine Authors: jcro125 Tags: Families Source Type: forums

Respirtech jacket
I recently got a new jacket. I'd always used a black one but thought I'd try something different and got a colored one. I feel it's not doing as good a job as the black one; it's not as tight and I don't feel like it gets the upper lobes as much. To those using the Incourage, do you use a colored vest and find it's doing its job? Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 17, 2015 Category: Respiratory Medicine Authors: anonymous345 Tags: Adults Source Type: forums

Cystic Fibrosis Awareness Campaign
Please help us spread awareness with our Cystic Fibrosis campaign. Thank you. http://teespring.com/Cystic-fibrosis-Awareness (Source: Cystic Fibrosis Community Initiatives Forum)
Source: Cystic Fibrosis Community Initiatives Forum - August 17, 2015 Category: Respiratory Medicine Authors: kitoliwa Tags: Community Initiatives Source Type: forums

Medicaid criteria for Orkambi
This is Fl, but I think it came federally and thus would apply to all state Medicaid program (but not positive). http://ahca.myflorida.com/medicaid/P...i_Criteria.pdf Note they are saying between 40-90% FEV, but that IS NOT a label criteria and the FDA label actually says those under 40% FEV should have extra doctor supervision, so for those outside the parameters on Medicaid, it might mean a fight/appeal, which alone might leave you exhausted and breathless for FEVs. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 17, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Looking for CF people interested in helping with an artwork!
Hi everyone, My name is Charlotte and I'm from Melbourne. I'm trying to reach a broad CF audience and I thought this might be a good spot! I have CF and I'm currently in my final semester of my Fine Art degree, working with the idea of the many forms of isolation experienced in CF. If anyone is willing to, contributions from CF sufferers would be very valued!! I'm collecting hand written responses (if you have a young child maybe they'd like to do a drawing?) so, an image of your hand written response of how you personally interpret isolation in CF in however long, short, literal or abstract as you like! They can be sen...
Source: Cystic Fibrosis Community Initiatives Forum - August 16, 2015 Category: Respiratory Medicine Authors: charken Tags: Community Initiatives Source Type: forums

I need some help with a uni artwork!
Hi everyone, My name is Charlotte and I'm from Melbourne. I'm trying to reach a broad CF audience and I thought this might be a good spot! I have CF and I'm currently in my final semester of my Fine Art degree, working with the idea of the many forms of isolation experienced in CF. If anyone is willing to, contributions from CF sufferers would be very valued!! I'm collecting hand written responses (if you have a young child maybe they'd like to do a drawing?) so, an image of your hand written response of how you personally interpret isolation in CF in however long, short, literal or abstract as you like! They can be sen...
Source: Cystic Fibrosis Teenagers and Young People Forum - August 16, 2015 Category: Respiratory Medicine Authors: charken Tags: Teenagers and Young People Source Type: forums

Gram stain and culture results for sputum are confusing!!
So my daughter's doctor asked us to test her sputum to see if she has an infection because she's been coughing for too long now (about 2 months). She's 4 and a half years old and this is the first time we have to face this so we're still not familiar with it. I got her results on the phone and was told that the gram stain showed no WBC's or neutrophils, but the culture stated that she has Haemophilus Influenzae which was also tested for sensitivity and resistance. I guess my questions are: Does the fact that there are no WBC's or neutrophils rule out the possibility that she has an infection? If that's true then how di...
Source: Cystic Fibrosis Families Forum - August 15, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums

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

Orkambi and M Abscessus
Was anybody out there on the trial who had m. abscessus? Did it help move it out? Ideas? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 14, 2015 Category: Respiratory Medicine Authors: ccsalema Tags: Adults Source Type: forums

what is the tips of teeth whitening
My teeth is not white but i want to white it. but i can't. If there are any tips, pls tell me. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 14, 2015 Category: Respiratory Medicine Authors: mandaji11 Tags: Families Source Type: forums

Weight
Hey Over one year i have lost 10 kilos (22 lbs) And about 30-40% of. Lung function. Earlier this year i was diagnosed with cfrd and my cf doctors expected an incline in both lungfunction and weight gain because now im gonna be treated with insulin. They basically thought the weight loss and lungfunction loss was caused by the cfrd. That was back in may. When i started the insulin Its now august, and i havent gained any weight or lungfunction. In fact i lost a lil bit more weight and about 2-4% lungfunction. So its definitly not getting better as expected. Idk how, or why Have any of you expierence with cfrd? And g...
Source: Cystic Fibrosis Adults Forum - August 13, 2015 Category: Respiratory Medicine Authors: Rickengelage Tags: Adults Source Type: forums

other inhaled antibiotics?
Hi there, Just wondering if there's anyone out there on any inhaled antibiotics other than Cayston, tobramycin/Tobi, or Colistin? I've seen some things online that there may be ceftazidime or amikacin available in the inhaled form? Just wondering if that's true and/or if anyone has ever been on it. Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 12, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums

Having trouble with CF services Grrrrrrrr
Is it just me with trying to fill my Meds with CF services It is such a daunting process with Hold on and then transfering then hold on 20 minutes yesterday 20 today grrrrrrrr. I wonder is it just me being placed on hold every time or is others having the same thing happen? I just feel like i need to spend so much time just to fill my Script each month I just have to vent my feeling in the past it went so much better but lately I just wish i had another choice. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 11, 2015 Category: Respiratory Medicine Authors: kgfrompa Tags: Adults Source Type: forums

Every Breath: CF Animation
Hey Guys LONG TIME NO SEE. Im youtube animator AngelXMikey. Several years back I said I was starting an animation about growing up with Cystic Fibrosis. I never stopped working on it, but I never got a lot done. But now Im ready to put alll my cards in and make it amazing. First I want to start by remaking the song so Im looking for singers, choreographers, and anything of the sort. I already have the choreographer from the original song, but this time I want more than one since a lot of you had input after I posted the song. Email me at mmstickfighter@yahoo.com with some samples of your stuff if you wanna join. Animatio...
Source: Cystic Fibrosis Community Initiatives Forum - August 10, 2015 Category: Respiratory Medicine Authors: AngelXMikey Tags: Community Initiatives Source Type: forums

Calorie Needs for CFers
Hey everyone, So a big topic when it comes to CF is eating and how to put on that weight. I have a CF youtube channel and have been emailed several times by people asking how I have been able to put on weight and what type of things do I eat. Just to sum things up I'm 25 years old, male, have luckily put on 30 lbs in the past year, and have 40% lung function. I just recently got together with my dietician and came up with 2 "CF Calorie Needs" equations to help CFers eat the right amount of calories each day. If you are interested, you can view the video here: https://youtu.be/QyTOGaHoiyM Good Luck and Keep Fig...
Source: Cystic Fibrosis Adults Forum - August 8, 2015 Category: Respiratory Medicine Authors: TheSaltyOne Tags: Adults Source Type: forums

ABPA and Xolair
Hi folks, Does anyone have issues with Allergic bronchopulmonary aspergillosis (ABPA) ? Do you do anything for it, any luck with treatment? I just got off Prednisone after being on it for the past 20 months. At the start of 2014 I had a CF-related decline in PFT that I was unable to really bounce back from after 3 weeks of IV antibiotics. They noticed my IGE level was over 6000 (normal is around 100 I believe), and had been for several months. They tried prednisone and voriconizole (one of the only anti-fungal medications, I've been told) but my IGE only dropped to around 1500-1000. Next the docs sent me over to alle...
Source: Cystic Fibrosis Adults Forum - August 8, 2015 Category: Respiratory Medicine Authors: Dank Tags: Adults Source Type: forums

Treatment for the mildly diseased
I've got my clinic visit coming up next week and am conflicted about starting Orkambi. I don't love the price (even though I won't bear the brunt of the price, I don't love making my self-insured employer pay), I'm nervous about possible side effects especially those involving the liver, and am little disappointed that it doesn't seem to be as effective as Kalydeco. My lung disease has been somewhat mild. I only do Tobi 2-3 months of the year usually during flare up in the winter, I've yet to be hospitalized for a pulmonary exacerbation, I cough and produce but it is rare for it to be any sort of disruptive. I'm still at t...
Source: Cystic Fibrosis Adults Forum - August 7, 2015 Category: Respiratory Medicine Authors: ethan508 Tags: Adults Source Type: forums

School
With school starting for some in the next few weeks, might be a good idea to post some helpful hints. Here's a link that I found especially helpful. Our own Lisa Greene's site: http://www.happyheartfamilies.com/SchoolIssues.html Each year I get a packet of info together for the school as well as a letter to teachers regarding any concerns that may or may not come up. First and foremost that our child is a normal kid who just needs a few extra things to keep him happy and healthy. Our primary issues were making sure he got enzymes and dealing with more than one child wcf in the school. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 6, 2015 Category: Respiratory Medicine Authors: Ratatosk Tags: Families Source Type: forums

CF sweetness...and then scariness!
As DS, who is 6, was finishing up his lunch I was working on sterilizing his nebs. He was watching and said "when I'm older I'll do a good job cleaning my nebulizers" and I said "I'm sure you will" and then we discussed the process. He then volunteered: "And I know what I'll do after I'm done?" I said what, to which he responded: "I'll go play with my children." I was nearly in tears over the sweetness until he added, "but I'll need a few things, some blue tape to tape them to the chair if they are naughty." YIKES! Well at least it was "blue tape" which is the pai...
Source: Cystic Fibrosis Adults Forum - August 6, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

For people taking Orkambi
Since I started the drug on July 31 I've been having constant night sweats and high blood pressure. As well as fatigue. Has anyone else had similar symptoms? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 4, 2015 Category: Respiratory Medicine Authors: KellyAnneB Tags: Adults Source Type: forums

Canadian Health Care System
I may be opening up a can of worms, but I wanted to know if there were any Canadians out there and how you feel about your healthcare system? Are you happy? Do you feel your quality of CF care is good? Do you have easy access to hypertonic saline, pulmozyme, Tobi, all the CF drugs? Are you able to see your pulmonologist when you need to? With all the debates going on right now in the states, I want to know how Canadians truly feel about their healthcare system. If you are in the U.S., how do you feel about moving to a single-payer system? Thank you, rosesixtyfive, mother of Sam (ddf508) (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 2, 2015 Category: Respiratory Medicine Authors: rosesixtyfive Tags: Adults Source Type: forums

Help please
So I'm 16 gunna be 17 in 2 months, I'm 4'11 and I weigh 88 lbs. I've began working out and everyone says I'm crazy because I'm already small. I get I need to gain weight which I will but I don't want to gain it from eating unhealthy all the time and getting like unhealthy weight. I'm trying to gain weight in muscle growth. I'm currently taking Mass Gainer Complex Protein twice a day, before and after I workout. Which is 700 calories in all. During the day I eat healthy, smoothies with a little protein in it. Just fruits , vegetables, my refrigerator is stocked with healthy foods. But I need help with supplements and the ki...
Source: Cystic Fibrosis Exercise and Fitness Forum - August 2, 2015 Category: Respiratory Medicine Authors: IsabelSlays Tags: Exercise & Fitness Source Type: forums

I want to make friends with people who understand me.
Hi there I'm Isabel and I'm 16 going on 17 in 2 months. I was just diagnosed with CF last year about 7 months after I began becoming sick. It's been a crazy year since it all started and I never new my life would change so much. I can't play my favorite sport anymore, my life plan has become difficult because of school, and even though I was just diagnosed I am in a severe state. Last year my lung function Dropped to 20% and 5 months later went back to 100. Now which is 8 months later I am at 50%. I stopped doing my treatments and taking my medication, I don't know I just don't want to do them anymore, I gave up on them. I...
Source: Cystic Fibrosis Teenagers and Young People Forum - August 2, 2015 Category: Respiratory Medicine Authors: IsabelSlays Tags: Teenagers and Young People Source Type: forums

Embarrassing questions about sex
I know I can ask my doctor this but I am a little embarrassed to ask so I thought I would try here first. I have done searches but cannot find the answer to this questions....is it safe to give oral sex to my girlfriend or can it cause me to get sick? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 2, 2015 Category: Respiratory Medicine Authors: knottstreet Tags: Adults Source Type: forums

Great option for getting started with exercise
This article offers a great way to get started with exercise. We all know exercise is so important for CFers and short, high intensity exercise has been shown to be really beneficial to all kinds of people. The method talked about in this article seems easy to follow, doesn't require special equipment or a gym and could be adapted to all fitness levels. I know I'll be giving this a try on days when I don't make it to the gym. http://well.blogs.nytimes.com/2015/0...have-fun/?_r=0 (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - August 1, 2015 Category: Respiratory Medicine Authors: jaimers Tags: Exercise & Fitness Source Type: forums

Travel question (a little wierd)
So we are going on a trip to across the country . Getting ready packing, daughter with CF has a slight cold. Few coughs, did complain of a sore throat this am, went away with drinking fluids. If we were staying home I would not be concerned at all; would just keep an eye on her. But; we will be flying etc. I was wondering if it would be really weird if I packed my stethescope in my luggage; just in case things go south. I do listen to her sometimes(I'm a nurse). Wondering ii would cause a problem with screening for security. THough I will be bringing her VEST, nebs, meds compressor...Is it silly? Kind of like if I bring it...
Source: Cystic Fibrosis Families Forum - July 30, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums

Weekly pill container
Nothing says it's the end of the week like an empty pill container! Is it just me or does time just fly by? It seems like I just filled my meds a few days ago. How many of you have weekly storage or do you just take them straight from the bottle? I never had a weekly container until after my transplant. It's highly recommend so you don't forget to take your very important anti-rejection meds everyday. I think it's a good way to teach the young ones about their meds. Thoughts? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 30, 2015 Category: Respiratory Medicine Authors: beautifulsoul Tags: Adults Source Type: forums

so frustrated...major drop in lung function so fast
Has this happened to anyone else? I was always quite healthy with CF..the occasional exacerbation, but oral antibiotics took care of it. FEV always around 60-70. Then, two months ago, I got pretty sick. Fevers, the whole bit. The fevers and chills went away after two weeks of IV antibiotics, but now I still feel like crap (lung wise)! I never really did feel better. My lung function went down to 34% and is staying there. I was put on prednisone for 16 days. That is done now, and it did nothing. I started symbicort at the time I started prednisone too, and I'm still on that. I went in today and the lung function only went u...
Source: Cystic Fibrosis Adults Forum - July 30, 2015 Category: Respiratory Medicine Authors: sasha Tags: Adults Source Type: forums

Fibrosis in the stomach lining.
Can anyone give me any insight on whether fibrosis found in stomach lining is DEFINITELY CF or not? My daughter's GI did a scope and biopsy last Friday and received the results today. She said they found "fibrosis in the stomach lining" and she would have to do further research to find out what that meant. I, of course, could not stop myself from googling and over and over found my queries leading to CF. They also found reactive changes of the esophagus. She is 19 months old with IgG-deficiency, they were doing the scope to look for evidence of celiac's. She has been chronically constipated since we switched fr...
Source: Cystic Fibrosis Families Forum - July 30, 2015 Category: Respiratory Medicine Authors: twinmomIM13 Tags: Families Source Type: forums

Vertex updates
Vertex had an earnings call yesterday and here is the transcript. The Q&A at page 3 has the most interesting stuff. This is a call with investors, though, so trigger warning--it's talking about the $. But I always find interesting tidbits on what's going on. The studies with Parion (sp?) sound promising and also that 3-4 next generation correctors will be in clinic in the next year. http://seekingalpha.com/article/3372...p=qanda&l=last (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 30, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Is there any fb pages for mom's
Hi just wondering if there is any pages or groups for cf mom's!! I have an 11 yr old and 12wks with #2. Thanks :) (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - July 30, 2015 Category: Respiratory Medicine Authors: missmary083 Tags: Pregnancy Source Type: forums

661 study initiated for heterozygotes
http://finance.yahoo.com/news/vertex...200100167.html vertex just announced initiation of the 661 trial for those with one copy of df508 and another gene not believed to benefit from kalydeco. When I get a chance I'll try to pull clinicaltrials link. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 29, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

New here. No diagnosis. Questions about testing.
Hi. I know that you all, unfortunately, have a lot of experience and knowledge about CF so I hope you don't mind me crashing your party. :o My son just turned 18 yrs old. A while ago, he brought this white bubbly rash on his palms to my attention. You know where I'm going with this. I did some googling and brought him to the dermatologist. He immediately confirmed my amateur diagnosis of Aquagenic Wrinkling of the Palms. My son said that they really start to hurt after his shower and the skin just falls off. The doctor prescribed some Aluminum Chloride solution to apply to his palms but my son never uses it. He has high f...
Source: Cystic Fibrosis Adults Forum - July 29, 2015 Category: Respiratory Medicine Authors: Stacey James Tags: Adults Source Type: forums

New here. No diagnosis. Question about testing?
Hi. I know that you all, unfortunately, have a lot of experience and knowledge about CF so I hope you don't mind me crashing your party. :o My son just turned 18 yrs old. A while ago, he brought this white bubbly rash on his palms to my attention. You know where I'm going with this. I did some googling and brought him to the dermatologist. He immediately confirmed my amateur diagnosis of Aquagenic Wrinkling of the Palms. My son said that they really start to hurt after his shower and the skin just falls off. The doctor prescribed some Aluminum Chloride solution to apply to his palms but my son never uses it. He has high f...
Source: Cystic Fibrosis Families Forum - July 29, 2015 Category: Respiratory Medicine Authors: Stacey James Tags: Families Source Type: forums