gene c.3140-26a

I just found out the other mutated gene that my 2 month old son has. He has the deltaF508 and gene c.3140-26a. I think this gene falls into the Class V cartegory but I am not positive. I am wondering if anyone else has experienced this combination or can help shed some light on what Class V is.

gene c.3140-26a

For those struggling with m abscesses

http://ift.tt/1WmtyCn

cystemine is fda approved and available for another condition. While early on study, if nothing is working this might be worth a shot.

For those struggling with m abscesses

Vertex Conference Call

Vertex had a conference yesterday to discuss earnings. http://ift.tt/1MXuM1Q
That is the transcript. Note: This was held for investors but it is public so anyone can hear. I've been stalking for 5 years and this is how I've kept current on the drugs, but be forewarned that the focus is the financials. I only skimmed but two things I heard of note: 1) The second generation correctors are being dosed in healthy volunteers THIS WEEK! 2) Vertex noted that it spent a lot of time picking these next generation correctors which bodes well that they really can work. Vertex had originally said they would be in trial at the end of last year, then early this year, but it appears they spent the extra time to find the best ones...and the in vitro shows that....last year Vertex only showed the 3-drug combo getting ddf508 to 50%ish cftr function and now it is up to 75% cftr function!!!

Vertex Conference Call

Pancreatic sufficient, but losing weight

Quick recap: My DS, 12 years old, was diagnosed with CRMS because of one mutation & one variant (DF508 & 5T/12TG) and borderline sweat tests (40/41). He has chronic constipation and wasn't gaining weight steadily on a growth curve so his Dr prescribed enzymes as a "trial" to see if they would help. He did begin to gain weight but I couldn't help but wonder if he was just catching up with a normal growth spurt or if the enzymes were actually doing something. The Dr that started him on enzymes left her practice and the new Dr agreed that we could do a little testing to see if he actually needed them or not. We did the one-time fecal elastase test and it came back normal at 380 (normal being >200). The Dr said he was PS so we stopped taking the enzymes. That was one week ago and he hasn't had any new GI symptoms like pain, diarrhea, or greasy stool (he's never had any of those), he is still constipated and taking Miralax daily, but now I have noticed a weight loss. We had finally gotten him up to 82 pounds (4'11" tall), and now after a week he is at 79 pounds, so maybe the enzymes were helping him after all. Here is my question: If he truly is PS, why would taking enzyme supplements help him to gain weight? In theory, his pancreas is producing all the enzymes he needs, so how would introducing more help anything? I'm so confused.

Pancreatic sufficient, but losing weight

Wwyd

So I picked up my daughter after school. She says oh I don't feel good today. Started after lunch but she said she didn't want to bother me or go to the nurse because I was at work. She said she was nauseous, had a headache and it hurt to take a deep breath. No fever. Min cough. question is; got a call to see if I could work 2 morrow(I am NOT obligated to) WWYD? This stuff comes up alot and my career suffers from it but her health comes first.

Wwyd

gene c.3140-26a

I just found out the other mutated gene that my 2 month old son has. He has the deltaF508 and gene c.3140-26a. I think this gene falls into the Class V cartegory but I am not positive. I am wondering if anyone else has experienced this combination or can help shed some light on what Class V is.

gene c.3140-26a

Toothpaste brands?

So been researching toothpaste brands and wonder if anyone had any input from the dentist or CF doctor related to CF issues? For instance the ingredient triclosan which inhibits bacterial growth but some studies indicate could make resistant to bacteria? What about baking soda once (for a natural anti-bactrerial impact?) Thoughts??? Thanks in advance!

Toothpaste brands?

CFTR nonsense w-1204, nonsense w-1143

Chr7: 117,267,718 G>A
Pathogenic
Zygosity: Homozygous
dbSNP ID: rs121908764
Population Allele Frequency: 0.00%
Gene Impact: CFTR NONSENSE W-1204-* NONSENSE W-1143-*
Gene Impact: AC000111.6 INTRON

Hello all,

I'm a 42 year old male and I had all kinds of problems with my lungs all my life (Pneumonia half a dozen times, Bronchitis more times than I can count, and asthma. A few months ago I ordered an Asthma Peak Flow Meter and my air flow is much worse than it should be even when I do not have any asthma symptoms.

For the past several weeks I have had Bronchitis. I didn't bother going to the doctor because this type of thing has happened so many times and the doctor doesn't really do anything. Every morning and every evening I make an attempt to cough up all the mucus I can out of my lungs and spit it into a trash can. This has been going on for weeks so I've been trying to stay in until my lungs are healed.

Over the summer I did a genetic test with 23andme and last night I paid money to have my Genes anayzed by Enlis. Turns out that I have a Pathogenic gene mutation for Cystic Fibrosis. I was skeptical because I thought it was a deadly disease and I'm 42 years old. But I read about it and I have had the following issues that could be related:
1. Almost died of double Pneumonia when I was an infant.
2. Pneumonia several times growing up. The worst was when it went undiagnosed for a long time because the doctor could not hear it. But when I got incredibly ill and had a chest X-Ray it was diagnosed then. A penicillin shot in the rear end cured it.
3. I've had elevated liver enzymes and a pale stool a couple of years ago
4. Asthma

Anyone know if it is possible to have the mutations I listed above and not have Cystic Fibrosis? Even if I don't have Cystic Fibrosis can NONSENSE mutations on the CFTR gene cause asthma, bronchitis, and pneumonia?

CFTR nonsense w-1204, nonsense w-1143

Opinions on Florida and living with CF; Doctors, Clinics, Medicaid, etc.

My daughter is almost 18 and has CF. She has been on disability for almost a year. I am considering moving to Florida from Ohio. She is trying to decide whether or not to come. I believe the more stable weather will be a benefit to her. She has been seen at Rainbow in Cleveland her entire life. I need info on the clinics in Florida. How they stand up if a lung transplant is ever required. And insurance matters. She is currently covered under her Dad's private insurance (but not sure how long) and medicaid because of her disability. This is a scary move and decision to change providers after all this time so any info would be very helpful.

Opinions on Florida and living with CF; Doctors, Clinics, Medicaid, etc.

Husband in the hospital for the first time at age 30.

My husband has double delta f508 mutations but has managed to make it to the age of 30 without having to have IV antibiotics or step foot in a hospital. I think we both prefer to think of him as not being sick. Well, around his 30th birthday when he started orkambi, his numbers did a nose dive and now he is entering the hospital on Wednesday. I am having a bit of a tough time wrapping my head around this and I'm sure he is too. He hasn't even told the people at work he has the CF. So, tell me about hospital visits. They really are a good thing to get his numbers back up? Am I right? They don't like signify the beginning of the end for his health. This can be a good experience, right? 2 week vacation of playing video games? I know he really didn't want to go to the hospital. We have 3 young children (adopted ages 4,6,7). Neither of us have any idea what to expect for the hospital. Help please.

Husband in the hospital for the first time at age 30.

Getting fat on Orkambi

Has anyone else been gaining weight like crazy on Orkambi? I know weight gain is one of the positives of Orkambi, and I was looking forward to hopefully gaining a few pounds. I have been on Orkambi for about 2 months now, and I have gained about 13 lbs. I don't want to gain any more weight! Right now it is a little funny that I am having this problem, but I may need to get myself on a diet soon!

Getting fat on Orkambi

New collaboration for gene splicing

http://ift.tt/1LwGEtE

this is huge! I've mentioned before out crisp and gene splicing and that they are working with vertex will get t den much faster I think because vertex knows the gene aspect and has the assay to test...likely ten years out but closer and faster every day.

New collaboration for gene splicing

Homeschooling: Original Sin versus Environment...Now I know!

So I homeschool, DS who is 6. He had his weekly spelling test this am and I suggested during his morning homework period he might want to review his words he said no, he didn't need to. I got everything ready and then had to do something in the kitchen and said you can take another look at the words if you want. When I got back and started he "fessed up" and pulled out the cheat sheet he had made and stuck in his desk. He flunked the test so I helped him practice learning and writing the errors and then as I was getting ready to "retake" select words, I saw him writing them in pencil on his desktop. So I guess there is no need to "learn" how to cheat in school...it's inherent!

Homeschooling: Original Sin versus Environment...Now I know!

How positive have the tests been?

My son is 7 weeks old. He had a sweat test two weeks ago and it came back at 81. since then, his other tests results have been as follows:

Throat culture - normal
pancreas - well above normal and dont need to give him the creon anymore
live level - normal
white blood cells - normal
chest x-ray - clear
all other blood levels - normal.

we are waiting for them to finish the genealogy on his blood to find the other mutation and go back on wed for another sweat test.

how likely is it that he doesn't have CF or is just borderline?????

How positive have the tests been?

Hill-rom vest for sale

Yes I completely own it. It was for my son, he passed away four years ago and now I'm strong enough to start removing the things that's no longer needed. It's in good shape and works really good. It is an older model and I'm only asking $500 + s&h so that I can put a proper headstone on my son's grave. Contact me at somonemiller@gmail.com 20140507_094206.jpg20140507_094105.jpg

Attached Images

• 20140507_094206.jpg (91.9 KB)
• 20140507_094105.jpg (90.0 KB)

Hill-rom vest for sale

Curious what's everyone's hospital like?

Where do you get admitted when you're sick or need a tune up? What do you like about the inpatient treatment and what could be improved? Also what kind of perks do they have for the CF patients for example special cafeteria privalages, DVD players, laptops, ect.....?

Curious what's everyone's hospital like?

Help I Need Advice ASAP!

I just moved and have been trying to get an appointment with the center in New Orleans but it's been a headache. They told me they needed a demographic page plus last clinic notes before they could give me an appointment. I called them to see if they got them in the middle of September because she said she'd call me with an appointment once she got that information. They hadn't received that info yet so I called medical records from my old center but they told me they faced the info on September 3rd so I had them fax it again. I waited and I didn't hear anything so I called Tulane back and they got the info but all they sent was the domographic page and my last PFT, weight, height, and vitals. She then told me that she might be able to get me an appointment one of two days in November and she would let me know which day after she talked to the doctor and she would call me last Wednesday but I haven't heard anything form her. She said because I've got other issues besides CF they need my medical records before they see me so I filled out the medical release forms my old center emailed me and sent them in.
I have been feeling really bad since August and have been trying to get an appointment with the doctor because I can't stand to go through the emergency room because I've had a lot of mistakes made in the ER. I've just been feeling worse and worse each day. Now it's gotten to where just getting dressed or even taking a shower makes me out of breath and exhausts me. I've been falling asleep even if I'm doing something for example I was using my phone and fell asleep and dropped it on my face. Other than the typical sick symptoms I normally get I've been feeling dizzy and extremely tired. I honestly don't know the words to explain exactly how I'm feeling except somethings wrong. I really need some advice on what to do. I've never been in Tulane before and I don't know their procedures for Cystic Fibrosis patients. Can anyone give me advice on what I should do with this big mess? And what's the procedure for inpatient care? For example is it the CF doctor that rounds? Is there a physical therapist? Are there any perks or privalages? I've had so many bad things happen in the hospital at the center I used to go to it makes me very nervous about the new center, so if anyone knows anything about Tulane's center good or bad please let me know.

Help I Need Advice ASAP!

Pilots with CF

New to the forum and was diagnosed a year and a half ago with CF at the age of 33. I used the search fuction and found only a few people who have become successful as a pilot. Does anyone have first hand knowledge of the trials and tribulations? After one year of fighting the FAA I was awarded a class three exemption on the medical. I'm currently finishing my hours and should be done in the next month or two.

Pilots with CF

Could it be CF in my 14 yo?

My son is 14 years old, weighs 78 lbs and is 4'10". He has had a cough for 2 years now and asthma among other things have been ruled out. He has had pneumonia twice and bronchitis once in this time. He is currently under the care of an endocrinologist because of his growth issues. He is falling farther and farther behind. His latest labs show his FSH to be very low and his LH to be low but not out of range. His vitamin D level continues to stay low despite supplements for the last year. It is currently at 21. He has always struggled with constipation and very large BM's. As an infant he had the same cough he has now that lingered from about the age of 8 months to 2 years. He suffered with chronic constipation as an infant that would have him screaming for hours. I terrified that this could all be CF. I tasted his skin to see if he tasted salty (he thought I was nuts!) but he doesn't. Any opinions? I'm freaking out right now! Thanks so much!

Could it be CF in my 14 yo?

Fish oil

Do you take? What brand do you take? I do give fish oil daily to my daughter. In the past I had bought Nordic Naturals. last time I just got what was at the drug store. Thinking of going back to Nordic Naturals...What types do you use?

Fish oil

Qvar 1 or 2 a day?

So DS doctor wants to up his qvar or rather has. She gave us the choice of a higher dose 1 a day or same dose 2 a day. I asked adv and disadvantages and whether better to do 2 a day which seems intuitively like t would be better but she said it s no different. Bu what I wonder is is that a clinical test no different like the albuterol inhaler versus nebulizers which studies show no different but cfers in practice will say the nebulized version works better? Or is it truly no different? We've been doing 2 a day because I have the meds left but in the evening DS is already exhausted and bouncing off the walls as am I so I'm thinking if truly no different I'd do all in am, but if there is a benefit to 2 a day in practice I'll just suck it up.

anyone qvar have thoughts or experience to share?

Qvar 1 or 2 a day?

IV ball options?

Hi,

I was just curious, are there any of those IV balls (eclipse?) available for PA medicines? Specifically meropenem? Just wondering for next time I need IV's. I'd really like to be able to work during the day next time without much interruption, so I'm hoping there are options for the portable IV meds rather than the standard IV bag/pole.

Thanks!

IV ball options?

question about sweat test results

Hello everyone, my 11 week old daughter was recently diagnosed with c.f. and I had a question about the sweat test.
First a little background - at 2 1/2 weeks old our ped gave us the news that our daughter's prenatal screening had found she had 2 gene mutations (the d508 one and another that only one other person has ever been diagnosed with 1331n). They then made us wait til she was 12 pounds to get the sweat test. So earlier this week we had the test done and her levels were at 102, which the doctor said was very high and definitely positive. He said that the levels don't necessarily determine how severe a person's symptoms may be, but it still scares me.
Right now she is mostly doing fine except she isn't gaining weight as much as she was at first (she's still gaining the normal amount per day, though now just barely). She's also extremely gassy and uncomfortable and spits up a lot. The doctor has prescribed her aquadeks, vit d (which she was already on because I breastfeed), creon, zantac, and 1/8th tsp of salt.
Anyways back to my original question - for those of you living with c.f. have you noticed any correlation between very high sweat chloride levels and severity of symptoms? Thanks for taking the time to read this, I know it's a long post. I'm just very scared for my daughter and trying to cope with the news

question about sweat test results

Giving newborn salt

Hello everyone, my 11 week old daughter has just been diagnosed with c.f.. The doctors told us we need to start giving her 1/8th tsp of salt everyday. The problem is they told me to give it to her straight (wet my finger, dip it in salt then put it in her mouth a few times a day) and not to mix it with any water or my expressed breast milk. I guess they don't want her to associate feedings with a negative taste. I have been following their instructions so far but she absolutely hates it and screams when I give it to her, which usually makes her cough from being so upset. Anyways, I was just wondering if any other parents out there that have had a newborn with c.f. have any advice on possible other administration methods? Or just keep giving it to her straight and hope she gets used to it? Thanks in advance

Giving newborn salt

Depression CF related

Hi. Just wondering how many of you or your loved ones with CF suffer from any form of depression. Years ago, I was prescribed Paxil by my CF Clinic doctor after breaking down in tears during one of my early visits. Later after seeing a mental health professional, I was described Adderall, after they diagnosed me as being ADD. They also gave me Xanax to sleep, and I was on this roller coaster of ups and downs for years, until I quit everything on my own. I still suffer from bouts of depression and it obviously affects my willingness to adhere to treatments and take car of myself, in general.
Any, Do you any of you suffer anything like this along with your CF? I just wonder if it " goes with the territory" so to speak. I am 58 years old, diagnosed 15 years ago with lung functions between 40 and 50%. Also CFRD.

Depression CF related

Instagram

Hi, I'm new here! I love connecting with CFrs on Instagram and was wondering if anyone would want to share their username and connect with me. Mine's Chelles_xoxo

Instagram

New Orleans Adult CF Center

I just recently moved to Ocean Springs, Mississippi and the closest CF center in to me is the one in New Orleans. Can anyone tell me about this center? What's the doctor like? What in patient is like also? What are the nurses like in the hospital and in clinic? If anyone could let me know anything about that center that would be so nice. Also is there anyone on here who lives in or near Ocean Springs, Mississippi?
I'm new to this site so I hope I did this write.

New Orleans Adult CF Center

Mrsa

My son is 17...dd508...fev 110%...colonized with MRSA...first dx with it in 2012. He would do a round of lenezolid and not culture for 6 months or so and then BAM! out of nowhere. Unfortunately, we have been plagued with this...mess! He has not had a MRSA negative culture since the end of 2014. Now the drugs are not working as well as they previously did and he is flaring up more often. I am VERY interested in any alternative/holistic approaches to controlling this. Any ideas are appeciated. Thanks

Mrsa

Nasonex on back order?

I went to the pharmacy to refill my daughter's Nasonex and it is on back order until December. Wondering what you all use besides Nasonex for nasal polyps? She does her Nasonex 2 squirts once a day.

Nasonex on back order?

More next generation correctors coming

Another company, Galapagos, is moving forward with a second generation one. Slide 11 for Vertex shows 4x improvement over the combo (661/Kalydeco), while this in vitro shows a 6x improvement over Orcambi (which has equivalent cftr improvement to 661/kalydeco). So many things coming!



http://ift.tt/1X6PMKI

More next generation correctors coming

Good news

My doc gave me the green light to think about pregnancy! She says my FEV1 is great and there is no reason why I couldn't have kids. Don't know if that is indeed in my future but I feel so relieved/joyful/NORMAL!

Here's to joyous days, all!!!!

(L)(L)(L)

Good news

Trying to figure out how accurate the sweat test is before tomorrow

My son is 6 months old. Since he was born something has always felt a bit "off" for lack of a better word. His stools have always been bright green with mucus, he's had a chronic cough that is consistantly getting worse, he was always crying until about a month ago, he's always breathed funny, and he is always congested. I've been to several doctors, most of whom blew me off and told me it was a milk allergy or reflux. I tried reflux meds and a total elimination diet at first for months but neither helped. Finally I found a pediatritian who listens to my concerns. She sent me to a GI specialist who didn't feel like this was CF and kind of shot me down when I mentioned it because he's small but he was steadily gaining weight at the time. He did some blood tests and a couple of stool samples for parasites and sediment rate and concluded that he couldn't find anything wrong with him and that he was just a "fussy baby" who would grow out of it. My ped decided to send me for a sweat test anyway which we are getting tomorrow at a CF center in Chicago. My question is, he doesn't taste salty to me so does that mean the sweat test will be normal? My insurance refused to do the genetic blood panel unless his sweat test came back positive and we can't afford to pay for it out of pocket. The lab tech said it would be around 3k. I'm just concerned that the sweat test won't be accurate because he doesn't seem overly salty.

Trying to figure out how accurate the sweat test is before tomorrow

Allergic reactions to Antibotics

Hi.. I have posted before that last Oct. a year ago this month, my grandson had a terrible reaction to the antibiotics the doctors believe it was the cefepime and possibly the vancomycin. He had steven Johnson syndrome, I cannot tell you how terrible it was for my family but most of all for Connor. He did recover and we do feel lucky because it could have been a lot worse he responded to the steroid treatment, but it took over a month for him to recover.
Since that time my grandson Connor has had a reaction to 2 other antibiotics. He has a allergist that follows him, a derm specialist and his CF team. The docs told us Connor would need to start challenge testing, they need to find out what antibiotics he CAN take. He is pretty healthy right now and the bronch they did over the summer has really helped to clean out his lungs his PFT's look great!

So he was admitted last week and docs started with Zosyn, they started his IV treatment around 3pm but by 11pm Connor had a reaction.
He gets a high fever that just spikes up, chills, red all over, with rash and his labs show liver enzymes elevated. The doctors stopped the Zosyn and the next day he broke out in a rash with tiny blisters they gave him Benadryl which did not help.. then started steroids and that did help. Connor was fine, and got to go home the next day. He only has a little rash at this time.
The doctors talked to my daughter for a long time, this is the problem due to previous reactions and the reaction to Zosyn, they will NOT be able to use a huge list of antibiotics to treat Connor. They doctor said if .. no when! Connor needs antibiotics for anything it will be only once they have pin pointed the exact bacterial infection. He cannot take any antibiotics with penicillin, cephalosporin, and also vancomycin.
The doctors told us this can be very serious for a child with CF, and once my daughter showed me list that is now off the shelf for Connor
we were both in tears. My daughter is having a hard time pulling it together and being a Mom of a newborn now just makes it harder.
I believe in prayer and I know that these kids are fighters and the Mom's too!! There is still many antibiotics they can use and always always know that we can get through this! Connor is scheduled to go back in hospital first week of Nov.. another challenge test for another antibiotic. I am worried for my daughter and the results this time. But I am more upset for Connor having to go through this.. He said
when he got home last week .. that was terrible!! and I know he is scared (U)
Ok back to positive thinking!!! and prayers :o:o Please say a prayer for him and let me know if anyone else is having the same problems with reaction to antibiotics???

Allergic reactions to Antibotics

New Site Coming Soon

Hi my friends!
As I was reading through the threads this morning (my initial activity for the last 20 years!) I came across CFinTX question and I thought this would be a good time to reply to his question about the Pyrtze email sent out so here goes:
Great Question CFinTX!
Back in 1996 when I bought the domain: CysticFibrosis.com and (my partner had CF), I imagined a center for everything CF.
That would include patients, caregivers, family members, partners, HCPs and Industry Leaders.
We started with pretty simple message boards. The threads were entitled Patients and Families.
In 2003, we got a heavy duty database that would hold all the messages!
The revolt happened back then, when family/caregivers began to interact with the Patients! It would be unimaginable today for a caste system to exist here...meaning everyone wasn't invited to the different conversations! But that was considered revolutionary back then.
We have had different HCPs on our boards at different times. Now, we are blessed with DOT who is a respiratory therapist! She is learning from us and teaching us as she freely joins in the discussion.

We have had different Physicians on at different times. I received a phone call two weeks ago from one from a center wanting to make sure all the Physicians had our link in the their list serve...to get a first hand glimpse on patients experience with the Vertex Drug.

As for Chiesie's drug Pyrtze (enzyme), they agreed to sponsor us (through their agency). We had a banner for them from September to December and they were in all our emails at that time too. The Pyrtze enzyme is meaningful for this community because as Ratatosk mentioned, we lost Pancreacarb a few years ago which ended up being devastating to some.
Chiese also has Bethkis. We sent out emails three times for Bethkis and three times for Pyrtze.
I was impressed with the Pyrtze video on the pancreas and enzymes...don't miss it!
We were the ones who originally brought Zenpep to the community. I have been in contact with Actavis (Zenpep) and Abbvie (Creon) to come on board.

When I attended the CFF conferences, the first thing I noticed was all the Industry Leaders for CF were there...hosting dinners, galas, giving out notepads etc.
So I wonder why not here? Why not answer our questions.
Know they are watching.
Fabio Gratton is building a new site for us...making an investment, with ideas on how in this 21st century to bring all the players together.
From our survey, we know this community is ready to move into many new areas! To work with research, to have your questions answered...whether it be about drugs and the risks, where to get the best care, what devices to use and how to use them, how to avoid infections and how to save time!
Our site has the qualitative data that you have provided for 12 years now. We have saved it and 30,000 unique viewers search through it every month! There are close to 3 million messages! We are the Wikipedia of CF.
Our goals are broad. We have created jobs for community members and know through the work we all do that we will continue to grow as the on line summit for all.
Salt and Light,
Jeanne Barnett

New Site Coming Soon

DIOS prevention options

Hi everyone,

I've been struggling with intermittent DIOS now for several years. Previously I was using a cap of Miralax daily as a preventative. However, ever since I was treated with IVs over the summer, my bowels have not been the same. Now I cannot tolerate Miralax at all - I get severe gas and bloating with frequent BMs. Is there any alternative to Miralax for DIOS prevention?

Thanks

DIOS prevention options

Anxiety on Orkambi?

Hello all- I was wondering if anyone else on an anti-depressant or anxiety medication is experiencing anxiety or mood cycling on Orkambi? I am prescribed 10mg of escilatopram (Lexapro) for generalized anxiety, and have not had issues for years. However, I noticed within the first week that I have had extreme issues with anxiety attacks, constantly feeling nervous or jittery, and mood swings.

I understand that there is a moderate interaction there, but it almost feels as if I went 'cold turkey' off my meds, and I even experienced minor brain zaps one morning. I tried doubling my dosage for one week (taking 1 20mg pill instead of 1/2), to no avail besides feeling moderately sedated.

Has anyone else on an SSRI experienced these issues? Has anyone found solutions that either revolve around switching medications, or for instance, taking their SSRIs at a different time of day? I am working with the CF social worker and also my primary care physician, but I wanted to hear about others' experiences. I can take the other side effects- nausea, fatigue, or overheating but the extra anxiety is almost enough for me to call it quits.

Thanks in advance!

Anxiety on Orkambi?

has the system been down????

I have not seen a new email post in weeks was the system down? Also I went to 4 different sites before I found my friends... I was starting to panic
Will now log on to adults to see what I have missed...

has the system been down????

Pertzye?

I got an email today from CysticFibrosis.com promoting this drug but I have never heard anything about it. Anybody on it or heard of it that can share more? Looks to be maybe an alternative for enzymes. I'm currently on Creon's but don't know if this would be considered an equivalent or an additive.

http://ift.tt/1PbAUsZ

Also, unrelated, this is the first time I've gotten an email like that from CF.com - do they typically promote drugs like this or is this just a new marketing tool they're trying to take advantage of?

Pertzye?

Super dry cough at night

Has anyone else ever had a bad dry cough at night? It doesn't wake me up. It's when I wake up to go to the bathroom. My chest is super tight and then I start coughing until I bring something up or move the junk around which is usually really thick at night... I am also 5 mths pregnant which could be some of the problem. I also have asthma to. Any suggestions on how to help would be great thanks.

Super dry cough at night

Orkambi works even if FEV doesn't improve

I know I'm tracking carefully what people are saying about Orkambi and specifically the FEV improvement. The Vertex conference noted one of the presentations at the NACFC which showed that there was no correlation between the FEV improvement at a specific point and reduced excerbations. In other words, even if FEV isn't improving, Orkambi is still reducing excerbations.
Here's the poster presentation: http://ift.tt/1LDZKej

Something to keep in mind if you aren't seeing an FEV improvement and think it's a waste of time, money, etc.

Orkambi works even if FEV doesn't improve

back to upmc

Im headed back to hospital in Pittsburgh after just getting out two months ago my lung function dropped 15% and really hard to breathe I hope they get me fixed this time I think this is the hardest year i have had in my life Im losing hope in getting any better its just been one decline after the next and now hard to walk to bathroom without being short of breath im just not ready for this im sorry bein so negative but I just cant see a way for it to get better I need to accept it I guess but its hard to know where it eventually goes thank u for this forum to let me vent and to everyone with cf make sure u make most of happy times sorry so depressing I hope there will b cure in future so no one has to go threw this

back to upmc

Vertex Conference Live Now--triple combo gets up to 75% function

I'm in tears watching the slides. The 3 drugs combo gets in vitro CFTR function to 75% function. Orkambi only to 25%. Kalydeco...that miracle for 551...only got CFTR function to 50%. And for heterozygotes to almost 50%, which again is what Kalydeco did for 551!
vrtx.com has link if you want to watch, listen

Vertex Conference Live Now--triple combo gets up to 75% function

A RespirTech Incourage System - For Sale - Northern New Jersey

Back in 2005 I was diagnosed with Plastic Bronchitis and given a respirtech incourage system to help with pt. From the beginning it has made me feel sick when using therefore I have only used it a few times. I would like for someone who could really use it to have the benefits of the machine instead of it sitting in my closet. I do want to sell it but at a fraction of the cost. Interested in all reasonable offers. Or if anyone has any advance on how to go about Back in 2005 I was diagnosed with Plastic Bronchitis and given a respirtech incourage system to help with pt. From the beginning it has made me feel sick when using therefore I have only used it a few times. I would like for someone who could really use it to have the benefits of the machine instead of it sitting in my closet. I do want to sell it but at a fraction of the cost. Interested in all reasonable offers. Or if anyone has any advance on how to go about selling it that would be helpful too.

Located in Northern New Jersey.

Contact me with an offer. Shipping Included. Pay with Paypal.

A RespirTech Incourage System - For Sale - Northern New Jersey

links to live updates for NACFC?

I they broadcast some of the sessions, but anyone know whose posting updates/slides/summarizes live of the NACFC??

links to live updates for NACFC?

Second generation correctors + df508 heteros updates

Just released:
http://ift.tt/1JUPNbc

Second generation correctors in healthy volunteers next month. 2016 in trials with triple combo for both ddf508 and heteros df508!!!

Second generation correctors + df508 heteros updates

Venting

Hello everyone. I started this new school program which is 40 hours a week and 20 hours in driving and homework= total 60 hours. I am exhausted and am waking up at 5am every day. Last time my pfts were 76 percent and I could breath well. My pfts must be down about 5 percent because Im to the point where Im struggling to walk up a slight hill with a back pack. I don't even want to put food in my stomach because the extra weight is making it even more difficult to breath. Ive been coughing up blood as well. In the 30 years of me being alive, I have never struggled like this to breath. I have no choice to keep pushing forward with my schooling. Its my last chance to have a career and good paying job. You can not take take time off either. Im allowed 6 day in the year as sick days so Im saving them for when there is no choice. Does anyone have any natural suggestions to help me feel better? I am going to try to work out this weekend because that has always helped me. Im starting to get upset because Ive worked 6 years to get to this point and my body is starting to fail me. The struggling to breath is driving me nuts and I cant sleep at night now. I just want a break from this disease. To breath fully, not have to deal with coughing or coughing up blood and sugar lows. I am stating to get discouraged and I am wondering how I will ever be able to be prego in the future and carry a baby if I am having trouble now. I did the last 6 years to be able to support a family, to not live pay check to pay check and to be able to support my dream of having a child. I am just feeling really low right now. (BLOW)

Venting

Residual Functions Mutations going to be on label for Kalydeco

Okay,I'm trying to do 10 things and maybe I'm not reading this right, but I think Vertex has just submitted sNDA for RESIDUAL FUNCTION for Kalydeco.
http://ift.tt/1jOIrBg

Autumn: YOUR'S IS LISTED!!! (based on your profile!!) Off label now!!!

Residual Functions Mutations going to be on label for Kalydeco

Hip Replacement

I'm headed down this road to a joint replacement. Has anyone on this site had one? There is NO information avail anywhere on this subject. I'm praying to get this done under a spinal, but I doubt that will happen. Thoughts?
I'm 51, female, FEV1 45, DDF508, retired.

Hip Replacement

Vanderbilt Pulmonary clinic in Tennesse anyone use them

I am thinking seriously about switching clinics. I can never get my drs to call back or communicate with me after I leave their office.It will be a 5 hr drive though so I need it to be worth it.

Vanderbilt Pulmonary clinic in Tennesse anyone use them

Be in my book!

Hi everyone,
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.

I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will then take all the material you guys have sent me, make hard copy book, and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.

Much love,
Sheila

Be in my book!

My project

Hi everyone,
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.

I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will then take all the material you guys have sent me, I will have a hard copy book made and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.

Much love,
Sheila

My project

I need your help!

Hi everyone,
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.

I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will then take all the material you guys have sent me, I will have a hard copy book made and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.

Much love,
Sheila

I need your help!

North America cf conference starts tomorrow

http://ift.tt/1MXw53p

Some live sessions on line

North America cf conference starts tomorrow

scared for my future

Hi, I'm 19 years old and I was diagnosed with cf when I was 7. I generally don't talk about my cf but every few months or so I usually go on Google and read about other people with cf. The reason I decided to post today is because I am extremely scared for myself. I don't take my medicine. Not because I decided I don't want to or don't have the time, just because I just don't feel like it. Some days I feel like "chrissy, you have to take your meds or one day you will regret it" and I'll take them. But that only occurs about once a month. Even now I'm telling myself I need to take my meds but I know my future self will find more important things to do. I'm genuinely scared for myself because this has been going on for years. I don't think I will ever get in a routine of taking my meds and I'm goi ng to regret it. I feel helpless because I know that tomorrow I will feel differently and just get up and do other things. I don't feel sick. Anyone with any opinions would really help. Thanks

scared for my future

Orkambi drug interactions that were not listed

Anyone have a interaction with Orkambi that a was not listed in their interactions list. If so what is it?

Orkambi drug interactions that were not listed

You can also see the family doctor, you should make sure

You can also see the family doctor, you should make sure to be comfortable with the treatment of younger patients. Most doctors to treat them, but regularly, and the office is not a child-sized medical equipment. It's also just waiting for a child-friendly, so you at every appointment for your little ones to bring toys and books are not comfortable unless you look. Younger patients he or she sees you often ask the practitioner, or for yourself to see just how often the child's office visit and look around at your next few visits primary care.

You can also see the family doctor, you should make sure

HPV (human papillomavirus)

So I went at one of the best gynaes in my city. What a wonderful oldman. He made me feel so comfortable, getting to know who i was, what I studiedand what my plans for the future were. He encouraged me to relax and he told methat we will find a way to get rid of HPV. Thank God! This showed me his levelof professionalism. He did a full exam on me. This meant that i had to becompletely naked. He examined me from head to toe and did the full pelvic exam.He also did a pap smear and examined my cervix. He discovered a wart right in themiddle of my cervix. I was nervous but surprisingly I was so caalm about it. Hethen told me that it would cost about 25-30K to have the wart surgicallyremoved. He requested a quotation from the hospital and everything amounted to13k. This is still too much for me. I can't afford it. I was a little worriedbut didnt panic. ( The old, negative me would have completely freaked out) Iasked for any other form of treatment that I could use in the meantime. Herecommended a product that helped other women called Cervugid Ovules (******lsuppository). He told me to take one suppository per night (12 ovules/box). Treatmentis with 3 boxes of Cervugid Ovules first time and another 3 boxes after 6months. i felt positive about using this product.
After I followed all the treatment I returnedto the doctor to replenish medical tests. It was the best day of my life when the resultcame back negative for HPV and the wart from cervix disappeared.
I amgrateful to this great doctor for treatment.
i felt it in my heart that i can cure myselfjust by staying positive and doing things that make me feel good. HPV is justanother journey I am on to building my perfect self. I would like to encourageeach and every one of you, particularly those who suffer from this illness orany other difficult or "incurable" illness to do things that make youhappy and maintain a positive mind-state. Incurable means curable from within.

HPV (human papillomavirus)

Haloterapy Opinions and Haloterapy Devices

Hi CF community
This group is great and helped us a lot.
I'm a parent of a recently diagnostic CF 8 year old girl. She had two positive sweat tests and we are waiting for the mutation test results.
She has tried Haloterapy (Salt Rooms), and we saw good result in releasing and ticketing the mucus.
In my opinion, it is one of the most efficient therapyes that she used.
I'm writing you to:
1º-Know your opinion about Haloterapy.
2º-Do you know any portable Device that we can use at home?
I have searched and found the following:
http://ift.tt/1Royoy3
http://ift.tt/1FQcFtJ
https://www.youtube.com/watch?v=WSWoP_P38lc

Thanks for you help

Haloterapy Opinions and Haloterapy Devices

Another icing on the cake of chiropractic treatment

Another icing on the cake of chiropractic treatment. Manual therapy led to it only treats the cause of your anxiety and carefully; Thus, it will be in a relaxed and soothing. Las Vegas Chiropractor doctors, when the patient lies on a bed of soft artificial to treat a patient. Using only their hands,Best Chiropractor 89074 experts ease the nerves and the body of the patient that he or she is down in a relaxed manner, improve blood circulation, changes in tissue pain.

Another icing on the cake of chiropractic treatment

Have you stopped Orkambi because of side effects?

In various threads I've seen several refer to discontinuing Orkambi or dropping out of the study. I'm we could try to pull the info all together, with some of the surrounding factors to help CFers access things.

So, if you discontinued or dropped out, could you respond and note:

How long you were on and why you discontinued?

FEV at time of starting?

Antibiotics or meds you are allegic too or unable to tolerate besides Orkambi?

If you have autoimmune or other issues that make meds more challenging?

Thanks in advance!

Have you stopped Orkambi because of side effects?

Is there anything against Abscessus when Tygacil, Amikacin etc have failed?

Hi all,
With some desperation, I am looking for some support and ideas on this forum.
I have been hospitalized now 3 times for abscessus infection the last 8 years. The first 2 times I bounced back each time a bit after 11 and 6 months hospitalization, thanks to Tygacil which was just on the market. ANd then I stayed out of hospital for 3 years each time.
After the birth of my daughter (a miracle!! Thx Gd!), I started crashing and was hospitalized 5 months ago.
Unfortunately my abscessus is nowadays resistant against all commonly used drugs such clarithromycin,cefoxitin, moxifloxacin clofamicin,amikacin,meropenem and now also to tygacil. After 5 months in hospital I was discharged this week, as basically there are no options left and the meropenem, amikacin,clarithromycin, tygacil cocktail showed now progress.
So I am in worse shape now as I was when i entered hospital and I am really scared big time. I have a 7 months old daughter and sometimes I fear I will not see here become 1 or 2 years. ALso because transplant is not allowed for abcessus patients.
So I am just wondering if anyone has heard about or has has any experience with any investigational drugs (e.g.bedaquiline) or is on a special regime or has some nice ideas about alternative or supplemental medication. Anything will be much appreciated!!
Thanks a lot and sorry for the melodramatic tone in my message..I am almost 40 and for first time really scared as s...t
Warm regards
Jeanpaul

FEV1: 1,0 ltr, Df508 and E528X, 39yrs, Male, Healthy miracle daughter of 7 months , fighting abscessus

Is there anything against Abscessus when Tygacil, Amikacin etc have failed?