An upgrade to cysticfibrosis.com is being launched!

Hi My Friends,
Our upgraded site is being launched within the next hours!
Know that some of the most current threads are being archived and will be available soon. Feel free to repost a question.
I am very excited for this upgrade to our very important conversations! Please have patience. This is a momentous task to move millions of messages, have them up and running for SEARCH and to be present for all your important questions and answers.
Thank you!

Salt and Light,
Jeanne

An upgrade to cysticfibrosis.com is being launched!

Wonder if anyone else has heard this

I had my son at his neuro. Doc on Monday, and was discussing his upcoming appointment with a geneticist because of all of his other diagnoses and odd symptoms unrelated to his cf. she said it was funny I brought that up because tomorrow, (meaning Tuesday), they had someone coming to discuss the possibility of no longer using genetic testing for diagnosing cf. instead relying on the sweat test and clinical symptoms. (They also have a cf clinic ran out from the same satellite office). We has so many other things going on during his appointment that I really wasn't able to actually think about this until after his appointment.
just wondering if anyone else has heard this?
jshet

Wonder if anyone else has heard this

Orkambi and Rash?

Has anyone else had a rash after starting Orkambi? I know as side effects go this is a minor one, but it is really driving me crazy. It is popping up all over my body and is itchy and a little burning. I work with dogs and out near poison Oak a lot so I'm just trying to figure out if this is an Orkambi rash or a Poison Oak rash. If anyone has experienced a rash please let me know what it was like and if it goes away like the other side effects do.

I'm on Day 3 and experiencing a lot of flatulence(really stinky!), chest tightness, insomnia, some upper stomach pain. First day I coughed up a lot of mucus, but now I am having a dry cough.

Many people talk about the SOB and chest tightness and how it goes away, but I haven't heard anyone talk about the rash, but I'm hoping it goes away like the other side effects :)

Orkambi and Rash?

CF Foundation attendance policy

Below is a snippet from the CF foundations page regarding indoor events attendance policy.

"To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time."

I'm a huge supporter of the foundation and its mission, but as someone with CF, I find this policy not only demeaning and insulting, but discriminatory. We are adults, and capable of making decisions about the risks we choose to take in life. If we want to smoke, drink, or live on an island surrounded only by people with CF then we can make those bad choices and live with the consequences. Right?

I've never been told I couldn't attend an event because I have CF until last year, and then again this year (same event). My wife and I want to attend a fundraiser event, but they will not let me attend because I have CF. I'm really not sure why they feel like they are responsible for deciding the risks I'm allowed to take.

I'm curious to know if others have experienced anything (good or bad) regarding this policy and what your thoughts are.

CF Foundation attendance policy

How Does Forskolin Work for Weight Loss?

Fat or adipose tissues of our body are made up of fatty acids. Forskolin helps you remove fatty acids from the body. It activates the metabolic process of your body to convert the fatty acid into energy. Because of the fast breakdown of fatty acids, Forskolin significantly reduces the body fat. In addition to that, cAMP in Forskolin, is responsible for reducing the synthesis of more fatty acids. This helps in maintaining the reduced weight.


Many brands are now available in the market that contains Forskolin. The right dosage of about 25-300 mg Forskolin can assist in weight loss. Always look for products with more than 10% Forskolin. How much and how fast you can burn away the fat depends from individual to individual. However, Forskolin can burn fat much faster than any other supplement.

How Does Forskolin Work for Weight Loss?

Bronchoscopy Question

My 17 month old son has a CRMS dx (df508 + a "varying consequence" mutation and negative sweat). We switched clinics about 4 months ago. Our new clinic felt that my son's health history and culture history warranted a bronchoscopy. Last Wednesday he had the bronch as well as an endoscopy and an Infant PFT. Normally they have you return 2 weeks post procedure but because of the holiday it looks like we may not be getting in until sometime next month. I've asked the nurse to talk to our pulm about getting us results over the phone at least - we'll see if it happens - but in the meantime I have a couple questions about the limited information I do already know about his results and I was hoping someone could help give me some ideas of what this could indicate.

So the first thing they did was an infant PFT under sedation. His pulmonologist told me that he was "confused" by my son's scores (indicating they were lower than he thought they would be BUT he did not tell me any of the numbers). He said that following the PFT they put him under general anesthesia for the bronch - and it appears he had some issues with the anesthesia which I guess is not that uncommon with these kids? But he needed albuterol at that point to help his airway stop constricting. Anyhow, the pulm said that there was a significant amount of inflammation in his left small airway. He seemed to be surprised by that. My son is already on twice daily nebulized pulmicort but we also got sent with a prescription for oral prednisone for 3 days and he said we would be switching to a stronger steroid at our next visit with an inhaler and a spacer. He said he did not scope the upper airway because "that would have been too much" for my son.

Apparently there were no mucus plugs. He said as far as mucus, everything looked really good. He kind of tossed around phrases like "reactive airway" and "sensitive lung" but wouldn't go as far as to say that was a certainty - or even really explain what that meant. And the GI mentioned that the only issue the pulm mentioned to him was an "edema"? Which confused me further. (yes, i should have asked more questions but I was overwhelmed just trying to keep it all straight! and jotting down key words) And as of 5 days out there was nothing growing on the lung culture other than normal flora.

So can anyone help get me on the right train of thought here? What causes small airway inflammation? Since his mucus looks good would this maybe be more indicative of something like asthma? Or is small airway inflammation still on the CF radar? I honestly don't have a clue! I know he doesn't have any common allergies - those have already been tested. And we have no family history of asthma either. And with CRMS being so grey - I guess I am very confused that he had this much inflammation and what that even could possibly indicate.

Any help processing would be appreciated! I know I will eventually have results but I am anxious to start understanding and I like to try to prepare myself with possibly scenarios BEFORE talking to doctors so I can follow along better and not get thrown off by something unexpected. I'm a little wee bit Type A ;)

Bronchoscopy Question

Tell me about the vibralung?

Anyone on here have kiddos that use it? I read about it in one of the other forums. I would love to know more about the results and what you are seeing if you use it.

Thanks!

Tell me about the vibralung?

Really bored 0.0

Hey my name is Maddi. I've been in the hospital 5 times this year now. really bored and just looking for people to talk to. :p

Really bored 0.0

Can someone help with next steps...scared mom here

Hi All,
Please forgive my frequent posting lately. My 8yr old just came home from the hospital this afternoon. Here is a timeline of events up to this point. PFTs have slowly declined over the last few months. Culture shows an abundance of staph and she is put on Augmentin. Does nothing and PFTs do not go up. CT scan shows infection, loss of elasticity, and mucus build up in the lung tissue. I am told the CT scan actually looks better than PFTs would indicate.

Last Friday she goes in for a PICC and bronch. Bronch shows normal lungs. The doctor who did it said her lungs look great. No inflammation, no mucus. Pretty normal lungs. Bronch can only go so far so they do the saline wash and suck out the fluid. They expect to find some hard pieces of mucus from the lower lung tissue but there is none. So far the fluid is only growing the normal staph. I was expecting pseudonomas but nothing yet. I have been told that we could wait up to six weeks for something to show up on the culture.

Over the weekend in the hospital she had increased chest pt/vest with nebs and started IV antibiotics. Still not coughing up anything. Lungs sound nice and clear. She goes for follow-up next week. Our hope is the PFTs go up. They may not be back to baseline but there should be some serious increase.

So why am I scared? What happens if, after all of this, her PFTs do not go up? The nurse practitioner I spoke with today said she doesn't know and would have to wait to speak with doctor. This is the part that scares me. Has anyone been in this situation? What comes next? Do they remove part of the lung to get rid of the infection? I have heard of that happening.

Can you tell I am freaking out a bit?

Can someone help with next steps...scared mom here

eRapid and Bubbles

Ok, I know I recently posted about this, but I'm confused, so I'm trying again since I'm not getting much help from clinic. I asked them for a new mask for my son's eRapid (he uses it for albuterol.) He has been using the Pari Smartmask Kids Mask (he's 2 years old) and we had a few left over from our last pulmonologist (but he definitely needs a new mask.) So, I went to pick up the masks, and they gave me two Bubbles the Fish masks.
I don't think I can use these. Pretty sure I read somewhere the Bubbles mask is not compatible with eRapid...So, I guess my questions are, can I use the Bubbles the Fish mask with the eRapid for nebulizing albuterol? AND..if I can, can I boil Bubble or put it in a sterilizer to disinfect?
Sorry if you see this again, posting in a few places...

eRapid and Bubbles

Possibility to prevent meconium ileus while pregnant

Wanted to share this information for those expecting with CF prenatal diagnosis or possibility. It explains a theory and some research that DHA and GSH may help prevent meconium ileus. Obviously not conclusive but DHA is pretty common and you can get scripted prenatal vitmins that have a DHA pill with each vitamin. I was on the vitamin/DHA prescription for probably six months before conceiving and throughout pregnancy and personally think it might have prevent DS from having meconium ileus given that he had DIOS before age 2 (which is basically meconium ileus after birth), and has always had extensive GI issues.


http://ift.tt/1UqitRi

Possibility to prevent meconium ileus while pregnant

Why was my post deleted?

Hi, I posted about a research opportunity in Cincinnati, and now my post is gone. Can you tell me why it was removed?

Andrea

35 w CF

Why was my post deleted?

Cincinnati Research Opportunity - earn $200

Hi, I wanted to share a research opportunity I came across. Assistance in Marketing in Cincinnati is looking for Cystic Fibrosis patients and parents to participate in a research study the week of January 4th. It pays $200. Their number is 513.683.6600.

Andrea
35 w CF

Cincinnati Research Opportunity - earn $200

Family health care workers involved in ongoing

Family health care workers involved in ongoing education to stay abreast of all the latest developments primary care. How does breakthroughs, patients are offered these helpful treatment personal injury by family doctors.To remain certified, you must pass a family physician a written exam every few years, including three hundred hours of continuing education. If you meet a family doctor, you feel sure are aware of the latest and best treatment options in Southern Will County Health them.

Family health care workers involved in ongoing

Afflovest?

Just wondering if anyone has used the Afflovest? Is there any significant differences between the effectiveness of that versus the Hill-Rom? My doctor won't prescribe it for me since he has read it doesn't work as well as the Hill-Rom, but I need something portable for business trips. Flutter/Aerobika/ACBT is not effective for me without the help of an "external" form of therapy as well. Thanks for any advice.

Afflovest?

Trigger: amnio diagnosed cf positive

In 2010 my husband and I found out we were carriers. We were trying to get pregnant and were screened. Because we both screened positive as carriers we were sent to a fertility clinics to get info on ivf/pgd. We didn't know we were already pregnant. Our first son was born after a complicated pregnancy and premature delivery. He tested negative in new born screen for cf and was declared healthy. Fast forward July 2012 we found out we were pregnant again had an amnio at 15 weeks and our second son was also part of the sacred 25% that didn't carry either gene. Now here we are 2015 and pregnant with our third. We found out after the amnio returned that our baby was positive for both mutations that she is our first girl. We are heartbroken over the diagnosis. But we are now faced with carrying her to term or termination. I carry DF508 and my husband is 711+g1>t.

What we know now for certain: she has CF, she will be pancreatic insufficient, and that at this point her intestines are brighter than bone on ultrasound and have shown some dialation making merconium illieus a concern.


We've talked to 2 genetic counselors, 2 pediatric cf teams, talked to a Chaplin, watched the videos (good, bad, and ugly) read the forums on baby center, cried - a lot.

We are afraid for her how long will she live and her quality of life, being our youngest child and our only daughter, how much will she suffer, how healthy will she be over all, for our boys will they rally around her or will they find trouble when they are older to seek attention, for ourselves will the stress and strain tear us apart as a couple? But she's our baby girl...we were in the hospital yesterday- scheduled for termination but the doctor took one look at us and sent us home saying we weren't at peace with the choice and we needed to take more time to decide.

I'm grateful for the time now I can reach out and hopefully talk to people living with cf kiddos, loving them, and in some cases possibly losing them (I'm hoping the last is a rare and getting rarer occurance)

I know no one will tell me that they wish they had terminated given the option. And it's not a decision my husband and I are taking lightly at all but life is hard enough how can I willingly make it harder on my little girl? How can I let something go that I already love so much? How can I snuff out so much potential, how can I face that seemingly inevitable day that I will ultimately say "till I see you in Heaven?"

Hopefully I didn't step on toes or read where I'm not wanted- I'm looking now for words and woes of wisdom from people who love kiddos and live this everyday.

With the utmost respect and admiration,
A

Trigger: amnio diagnosed cf positive

Pancreatic Sufficient and Kalydeco

Hello,

Well by some miracle (namely our saintly CF doc) my older son got Kalydeco off label despite only having one known CFTR mutation. He starts tomorrow. I was wondering if anyone else like him (Pancreatic Sufficient) has taken Kalydeco? If so, have you found that eating certain foods with it make it more effective? My son does not have a problem keeping on weight (he is on the chubby side) but he does have intestinal issues when he has a high carb, low fiber diet. He has been doing well with a low Glycemic Index diet when he complies with it (when he doesn't he is on the toilet a lot). But I was wondering what kind of diet he should have for the Kalydeco. Should he make sure he takes it with food, and specifically with fat?

I don't think our center has had anyone who is PS take Kalydeco before.

Also any tips on things to do when starting it would be so helpful. It is finals week at his college, so not the best time to start. However, I don't think we can bear to wait. He has been sick and depressed for a long time now.

Thanks!!!

Fel

Pancreatic Sufficient and Kalydeco

Port infections--probiotics may cause

Had quarterly CF appointment a week ago and after reviewing DS's meds which included Culturelle, the dietitian asked if DS had a port. I said no and she explained at the recent CF conference they discussed CFers getting port infections from adding probiotic powder into the port (if I understood correctly). So if you or your little one has a port and uses probiotics you might want to discuss with clinic. fwiw

Port infections--probiotics may cause

ISO hillrom vest 104

My nephew in Peru has the hillrom vest 104, and his machine broke! We need to get a replacement ASAP. The universal healthcare there doesn't cover the DME and there are no vest companies near them. In seeking out a 104 or 104 part compatible machine! TIA

ISO hillrom vest 104

wet stretchable bandages

http://ift.tt/1M2XxZS

wet stretchable bandages

Losing the Battle on Sinus Infections

Please help. We are losing the battle on sinus infections. Sam had his second sinus surgery in October and he has already had two sinus infections. We are in a vicious cycle of three weeks of abx, followed by two weeks of good health, followed by sinus infections, and repeat. We do sinus rinses twice a day with saline and budesonide (sp?). We do hypertonic saline through the neb cubs twice a day. Sam just keeps a sinus infection. I am worried that I am going to have to quit work becuase he stays sick. I say sinus infection but they always start with some kind of virus or cold, then immediately go to an infection. His nose does not run. So sinus rinses are the only way anything moves out. Anyone else have similiar problems?
Thank you, rosesixtyfive, mother of Sam, 6 years old, ddF580

Losing the Battle on Sinus Infections

Do you change neb cups?

Someone in one of my other threads (sorry for hogging) mentioned changing neb cups for different neb meds. I had no idea. My daughter is 8 and has been using the same neb cup for two meds for years. I also only change the cup every 6 months. Does this sound right?

Do you change neb cups?

Crowdfunding for Cystic Fibrosis and Other Pediatric Rare Diseases Research Projects

Hi Everyone,

I represent a small pharmaceutical company located in Barcelona, Spain, called SOM Biotech. We are a very young company dedicated to drug repostioning. Drug repositioning is the process of applying therapeutics, which already exist, towards new diseases. In our case, we are focused on drug repositioning for rare diseases.

At the very present we are running a crowdfunding campaign to raise funds to start new scientific research projects in 5 pediatric rare diseases (diseases which affect a small portion of children worldwide). Cystic fibrosis is one of the projects included in our new initiative, which we are hoping to find a new and more effective therapeutic through our drug repositioning research processes.

Our campaign is currently running until February 2, 2016, and we are currently seeking research groups to collaborate with in the near future. We have the backing of several association and federations, including the Spanish Federation of Rare Diseases.

For more information about initiative and/or if you would like to donate, I welcome you to visit our pages: http://fightrarediseases.sombiotech....ex.php?lang=en and http://ift.tt/1YTrNQ7


Any help through donations, or by sharing our pages will be much appreciated.
In addition, I would be happy to answer your questions on here or at fightrd@sombiotech.com

Thank you very much & hoping for the best,

Attached Images

• 11894390_10153122062782607_3625519389752984014_o.jpg (54.7 KB)

Crowdfunding for Cystic Fibrosis and Other Pediatric Rare Diseases Research Projects

Help in testing

So my daughter is 3 almost 4 months. I did the testing and so did my oldest daughter, dont have or carry CF but my infant does carry with a low sweat test under 60 and has symptoms. I was told its possible for that to happen. Now! My daughters father will NOT get tested. His family refuses as well. I recently learned he has another daughter around 1 and I cannot find her (cue random lump sums of missing money from account). They said they need him or his brother or a child of his to get a full testing to narrow down what may affect her and what we can do now. I have more testing on the 14th so i dont know much. Can someone whos been through this give me any advice or tell me how i can get around them not being tested or what the next step is?

Help in testing

Cayston's Horrible Packaging

cayston.jpg

I've never liked cayston's packaging, but this is new, and seems to be worse than ever! they give no email address on their website, i'm not going to call them, and i'm also not going to send them a letter through snail mail. I just wanted to rant!!

If anyone has any special connections to the cayston people, feel free to show them this. Tell them that i didnt throw those first five away, but that i'm gonna hafta go buy a tiny pair of needle-nose pliers before i can open them! (slightly joking, but not really)
And you only hafta make the mistake once (or in my case, like... 5 times) of using a knife to pry those dumb things open, before realizing that's NOT a good option.

(i also did two more after this, with the same result as the first 5) :mad:

Attached Images

• cayston.jpg (102.1 KB)

Cayston's Horrible Packaging

There are doctors with specialization

There are doctors with specialization and super specialization. Some of the clinical specialties are ENT, Nephrology, an anesthesiologist, Medicine weight loss, Neurology, Obstetrics and Gynecology, ophthalmology, pathology, orthopedics, pediatrics, dermatology, psychiatry, skin diseases, general medicine, forensic medicine, intensive pre- care, radiology, rehabilitation and surgery family doctor.

There are doctors with specialization

PCD panel results....more testing

As we wait to see a new doctor at Riley Hosp, we got results from the PCD panel. This is what my message said: results show that she is heterozygous (has one change) for a variant of uncertain significance in the DNAH11 gene, which is a dynein gene.
The change found through testing is a variant of uncertain significance, which means that there is not enough evidence to know for certain if the change is benign or if it is associated with PCD. Because Claire has symptoms that are suggestive of PCD, we are somewhat suspicious that this variant could be significant, and we will request insurance authorization for deletion/duplication analysis of the DNAH11 gene since PCD is a recessive condition (in order to be affected a person must have two gene alterations).

So, does that mean she has 1 mutation and needs 1 more to be diagnosed with PCD?

PCD panel results....more testing

Moving to another state

My husband and I are considering moving from nj to sc. I have some concerns about the move now that i have been diagnosed with cf. I am worried about changing health insurance. Will insurance from a new ins company cover my cf needs or will they call it a "preexisting condition"? Will I be able to continue on kalydeco since i am currently on it off label? What are the adult cf drs like in the charleston area? I'd love to hear if anyone else has had experience with this and how it turned out for them. Thanks for your input in advance.

Moving to another state

Educate me about Pseudonomas please

Hi All,
My daughter is preparing to go to the hospital next week for a PICC line and IV antibiotics. She is 8 and has never cultures pseudomonas. However, her CT scan shows some infection and blockage deep down in her lungs. While she is getting the PICC she will have a bronchioscope and they will suck out some of the gunk that is way down deep and they will culture it. I will be shocked if it is not growing pseudonamas. This scares me as I have heard that it is really hard to get rid of and always comes back. I feel like her culturing it is the beginning of a very long losing battle.

She will receive antibiotics but what else can we do prevent it from returning for as long as possible?

Thanks!

Educate me about Pseudonomas please

Which is the best Ambry Genzyme quest or someone else?

Just got back results from Ambry . Had cftr full gene and cftr del/duo done on my husband. Came back in11 days with nothing found not even the M47OV which my daughter has and I don't . I am not happy with this Ambry testing since we have hers and mine and we're trying to find what she hot from him

Which is the best Ambry Genzyme quest or someone else?

Support for genetic testing with negative sweat test

I know we often say you can have a negative sweat test and still have cf and have noted several here have had that happen and have recommended posters to push doctors for genetic tests when cf symptoms but negative sweat test. But it sounds like the doctors don't buy it...well in searching for something else I found this from cff.org

http://ift.tt/1LQYx3l

Guideline 16 summarizes this point with a reference to a journal article. So those pushing for genetic testing based on symptoms this might help.

Support for genetic testing with negative sweat test

should I push for testing?

Ok, I have never done this before, but I need some advice. A little bit of history-my husband(27) had very frequent lung infections as a child. His bedsheets always had a salt residue on them from his night sweats(which he still has). They had him tested for cf, but his results were borderline, & he was never retested. The summer before we got married(he was 20 years old), he ended up in the ER for diagnosed pleurisy. From that point on, he has had a chronic cough, & allergy symptoms that don't ever go away. Fast forward to current. He is exhausted. He can't sleep at night, & his sinus infections will not go away(blows his nose constantly green). He gets winded while walking normal, or picking up one of our small children. He can't exercise without feeling like his chest is going to explode. He has had a few dizzy spells where he had to sit down & catch his breath in the last couple of weeks. Also starting these past few weeks, is strange bowel movements(he is going sometimes up to 4 times a day, where normal for him was once a day) He had mrsa infection over the summer, that we almost couldn't get rid of. Im just throwing all of his symptoms out there. We finally got health insurance at the beginning of november, & sent him in for a physical/bloodwork. His bloodwork shows low platelets, high cholesterol(despite a VERY healthy diet which we started two years ago, hoping to help him feel better), & a vitamin D deficiency, which we don't really understand, because he drinks whole milk daily, & is outside all the time. With his cholesterol bloodwork, they sent us to a cardiologist, saying he could have a heart problem. Which kinda lines up with him not having energy, & being winded. As soon as the cardiologist listened to his heart, & had him breath in & out, he said he was prescribing him an inhalor, & sending us to a pulmonologist for chest xray & a full workup. He said my husband more than likely has asthma, & some type of lung infection. His pulm appointment is monday, & I don't want to sound like a crazy person, but I don't think asthma would make him feel so bad for so long! But that's why I'm here! Should I just let the pulmonologist do his job, or should I push for a sweat test to be on the safe side? There could be a million things wrong with him aside from cf, & i know that. I just don't want to push for an unnecessary test, if I'm crazy for thinking he could have cf. Help!

should I push for testing?

Need advice from more experienced parents

Hi All,
My daughter has been doing really well up until a couple of months ago. Her PFTs started dropping. She just finished a course of Augmentin as she was culturing an abundance of staph. PFTs stayed the same. Had a CT scan which shows loss of elasticity and some scarring in the lower lobes. Is going in next week for a PICC and IV antibiotics and intense chest therapy. She is in the Orkambi trial and, thankfully, I believe it has helped her maintain a healthy weight. She was in hospital two years ago at this time and she looked very sick. Today she is pink, active, has a healthy BMI, o2 at 98%.

My fear is that she is losing her lung capacity rapidly and she is only 8. Doctor says some of this may be reversible with the IV and PT. So my question to those of you that have dealt with this in the past is what can we try at home to make sure she doesn't lose any more lung capacity? We already do the vest for 30 mins daily but I don't think that really reaches the lower lobes that well. She also sees her PT once a week. She plays hockey but she is on a beginner team so she isn't skating that much. She also does gymnastics about one hour a week. I am thinking we need to increase the physical activity. Are some activities better than others?

Any suggestions are really appreciated. She is my only child and I am so scared of losing her too soon.

Need advice from more experienced parents

Diagnosed at 36

Hi everybody,
I joined the forum when i was diagnosed with cystic fibrosis this summer, but for some reason I couldn't post under my old screen name.

I was diagnosed in July after my pulmonologist did a full panel of bloodwork. I had previously passed 2 sweat tests. I have moderate bronchiectasis and am culturing m. absessus. I spent 4 weeks on iv antibiotics this summer and got pancreatitus as a side effect. This was my drs big hint.

As i said in the title i am 36yo. I had no idea anything was wrong with my lungs till i got pregnant with my now 4yo son(carrier-d1125h). At 5 weeks pregnant i had my first and only really bad bought of hymoptosis. I went to the hospital and they did a bronchoscopy which showed the infection. I had a regular pulmonologist that i saw after the infection was caught and she just assumed it was dormant and didn't treat it. When she retired she recommended i start seeing specialists at university of pennsylvania hospital. They finally figured me out and loaded me up on meds.

As a kid (and adult) i was always really small, but i am ps so that is just genetic for me. I had a lot of sinus infections growing up and thought i has asthma, but the dr said i didn't. Everything was attributed to allergies.

I am now on kalydeco(off label), clofazimine, azythromycin, ethambutol, albuterol, hypertonic saline, and Pulmozyme. They have helped a lot. My last fev was 67%. I haven't had one done since starting the kalydeco though. I am due for one soon and am hoping for a positive jump.

It has been nice to meet you all and read about all of your experiences. You have all helped me more than you know already.

Diagnosed at 36

Singing and lung disease

http://ift.tt/1OuTcVx

Singing and lung disease

Vibralung..where can I find it? And for how much?

Hi all,

I was wondering if anybody knows where I can find the Vibralung device for airway clearance? I tried contacting the company more than once but had no answer. I found it through an online retailer but it is sold for $5000 which I feel is too much after going through some posts in this form that discussed its pricing.

I am visiting the US in about 2 weeks and would love to buy one for my daughter after reading great reviews about it.

Any help would be really appreciated.

TIA

Vibralung..where can I find it? And for how much?

Giving Tuesday!

We are getting ready to launch our new site...which the HOLs agree is wonderful!
At cysticfibrosis.com we have been CF Awareness for 20 years from the patients up!


Through our CFTechnology.org 501 C 3 we can give away technology and we are always about education! We have been approached from clinics all over the world...needing technology and supplies.

So if you are looking for a place to give today...
Donate

And WATCH for our new site...it will surprise you!

Thank you!
Salt and light,
Jeanne

Giving Tuesday!

Need ideas

I’m on the great strides advisory committee for my local CFF chapter. I have a meeting tonight and am looking for ideas to pass along. It’s been noted that most of great strides participants are families that have children with CF. There’re a lot of activities at the walk that are focused on kids, so this makes sense. Does anyone have any ideas on how to increase involvement of adults with CF? Of course, the infection control restrictions make this especially challenging. Ideas don’t have to be focused on great strides event. Any ideas to actively engage and encourage adult involvement in fundraising are welcomed.

Need ideas

Please help! Possibe CF? Sweat test needed after rectal prolapse in 2 1/2 year old

Hello,

This is my very first time posting here. I never thought I would find myself posing questions in regard to CF and my children, as I thought any fear of CF would have been completely put to rest by my prenatal testing and newborn screening. Apparently, as I am learning, this is not always the case.

I just got back a little while ago from an over night stay at a children's hospital following my daughter's first experience with rectal prolapse.

After speaking with the gastroenterologist at the end of her 24 hour observation period, I learned that it is protocol to send children her age with rectal prolapse for a sweat test for CF. He sort of brushed it off, and I brushed it off as well. Then, of course, I came home and googled it.

I am currently quite terrified, because it seems she may have some symptoms of CF, and I am in desperate need of input. Here is a little background, please tell me what you think:

-She is 2 years and 7 months old. She tested negative for CF during new born screening, and I also tested negative for whatever gene mutations are tested for during early pregnancy- in each of my three pregnancies. She is my middle child, I also have two sons ages almost 4 years old and 10 months old.
-She has had severe constipation with abdominal pain for 9+ months. Her stool is often the size of a baseball and hard as a rock. Other times it is very soft, but no less painful for her to pass.
-She only had one rectal prolapse, which took place yesterday afternoon following an enema.
-Since birth, she has had very foul smelling stool. She can clear a room. It is much more smelly than my other two children.
-She has always had a decent appetite, but has never really put on much weight. She has been consistently in the 5-10th percentile for weight since birth. She didn't catch up to the 25th percentile until her 2 year well child visit. She is very petite.
-Since late infancy, she has had large, hard green "boogers" in each nostril, almost everyday and when she is not sick, nearly completely blocking her nostrils. They are huge. On the days she does not have that type of hard mucus, her nose seems to always be crusty and have "boogers".
-Lately (last few months) her eating and sleeping habits have changed. She eats less, drinks more liquids, and wants to sleep in our bed.
-She has never had breathing or lung issues that would signal a problem. She is currently getting over a viral upper respiratory infection (her lungs sounded clear) and her first ear infection.

In addition, I am thinking that my 10 month old son also has some concerning symptoms:

-He has a very large appetite and loves "solid" (baby) food. He eats a lot, and moves his bowls sometimes up to 3-4 times per day, often ruining an outfit.
-He is also on the smaller side- 25th percentile for weight.
-He has had what seems to be one cold after another for the last few months. He had at least 3-4 coughs in a row, and is currently getting over bronchiolitis and a double ear infection.
-He would often sound gurgly when sick.
-History of pyloric stenosis (6 weeks old).
-Passed new born screening for CF.

What do you think? Should I be very concerned? The sweat test is not yet ordered, as the gastroenterologist wants to schedule it at her 2 week follow-up appointment. That seems like an eternity from now. Do you think I should insist that my 10 month old be tested as well?

Any input or information you could pass on would be greatly appreciated! I am one extremely anxious momma right now!

Please help! Possibe CF? Sweat test needed after rectal prolapse in 2 1/2 year old

hill rom vest

I have Hill rom vest model 105 I need to sell. I have 2 vests, size child large in blue and adult small in pink. It comes with travel/storage bag, manual and extra hoses. It has 735 hours of use on it and works great. Email if interested threeeades@aol.com.

hill rom vest

Cayston

I have a 23 day supply of Cayston. If anyone wants it, PM me.

Bill

Cayston

job

hi,
i,m new to this. just a quick question, do any of you pwcf work in construction? im apprentice carpenter at the moment, but i have been told by my doctor i had to give up cos of dust. so i am wondering any of ye out there are carpenter or builder or construction worker?
thanks

job

The first thing you need to do in terms of research doctor

The first thing you need to do in terms of research doctor to find out what allows your health insurance provider primary care. For example, you may find some insurance plans will be required for you to choose a new doctor from a group of people pre-approved. Others may offer some sort of monetary stimulus, if you go to the doctor, which is associated with the insurance plan personal injury. You need to find these things.

The first thing you need to do in terms of research doctor

Cayston

I have a 23 day supply of Cayston with a exp date of 3/17. If anyone wants it send me a PM.

Bill

Cayston

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 because I've had so many polyps they have actually moved my septum over causing my nose to be narrow. So this time around I need polyps removed AND my septum fixed. Has anyone else had these problems? How is the pain afterwards? It's so frustrating. CF problems are never-ending. You fix one thing and another one decides to surface. Surgery is scheduled for Dec. 11th. I am so uncomfortable. I can't breathe and have terrible sinus headaches. My whole face throbs! I NEVER snore and some nights my poor husband has to sleep on the couch because it's so loud. Can't wait to get some relief. Thanks for listening. Hugs,

nasal polyps and deviated septum

Considering 2nd adoption

We adopted a baby last year through the foster care system. Our sons biological parents are pregnant again. They asked us if we want to adopt the second one. I am 39 with cf. I work full time college professor and have my own fitness business. I am torn on the second child. I don't know how much harder is 2 vs 1 will be? We got our son at 6 months so he was sleeping 12 hours per night. Sleep is a big thing for me and getting sick. For those who have two can you share? I would be able to take maternity leave for six weeks and I am off from May to August. Sore torn???

Considering 2nd adoption

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 was able to reassure me that things would be ok. Then just this week, I woke up in the morning again with a very small bleed. I ended up working from home to keep an eye on it. But all week I have had a hard time not worrying about it happening again. And I'm particularly worried about it happening while I'm at work or in a place where I'll be alone. And I'm also concerned that one of these times it's going to be a larger bleed and turn into more of an emergent situation. Am I just being overly dramatic? Or does anyone else have these fears?

anxiety about hemoptysis

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

A New Home for CysticFibrosis.com!

New CF vitamin DEKAs

Just wanted to let you know there is a new CF vitamin available called DEKAs - if you have any questions I will try and answer them for you.

New CF vitamin DEKAs

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 plus - it was time for some IV antibiotics for me. I got my picc in 2 weeks ago, and spent an entire week at home on IVs before I checked myself into the hospital. My breathing was labored more than usual, and I realized I felt like I wasn't convinced the antibiotics were doing enough for me this time. I got into the hospital, my IGE level (which they use to monitor my ABPA) was around 3000~+ (normal people go upto 300, apparently). I've seen it as high as 6000 without many of the abpa symptoms. Now I'm feeling the symptoms and they didn't seem to get better with IVs - so a hospital visit seemed most appropriate. They discovered a GIANT mucus plug constricting a large airway in the middle of my lung.

In the hospital, the doctor recommended a pulse dose (a really high short dose) of steroid, to get my apba under control and to allow antibiotics to work better. The difference on my xray was incredible.

Now a few days later, I'm still getting over this "fog" the steroid put me in. Easily one of the worse medical experiences I've had thus far. Not being able to think clearly is really tough when going through being sick and trying to stay positive from CF, and then pair that with my inability to find a job and running out of borrowed money to live, and it's been quite awful! Thank everything I am that my girlfriend was here to keep my life moving, just as normal. Wish it was easier for everyone to actually focus on your health. This "american dream" we live in of: work till you die (erm, retire?) doesn't really work when I'm falling apart in my late 20s. More wishful thinking wishing I could change things out of my control.


Anyone had a similar experience w/ the steroid?? I'm interested if the pulse dose of steroid is a new thing, or if it's been used in the past for other things with CF.

ABPA + Lung infection = pulse dose of steroids + IV antibiotics..

Double Transplant for CF?

I just received my packet for my transplant testing and was reading through the material. I will be going to Cleveland Clinic. While my lung functions are still in the mid 40's I'm curious as to what I've been reading. I know I won't be listed as a critical person (my doctors wanted me to get on the list so I'm there in case I get really sick and they start to fall again). In the packet it said CF patients usually get a double transplant. I was just curious if this was the case for everyone or have any of you only gotten a single transplant. I would think it would vary per patient, but it sounds like at Cleveland Clinic that this is a standard. Wondering what your experiences have been?

Double Transplant for CF?

Maintaining your Portable Generator

In the same way as other different bits of crisis gear, we don't consider keeping up a compact go down generator until the requirement for it emerges. It's similar to with crisis electric lamps that we continually neglect to change the batteries in – aside from that a generator can control your whole house. As winter tempests approach, with conceivable substantial icing and winds that can topple trees and electrical cables, this is the ideal opportunity to protect that your convenient generator is prepared to keep you warm and lit up on account of a force blackout.


Ensure your generator fuel is new and stable


As something that doesn't get much in the method for use, the fuel in a generator is frequently disregarded. In the event that you think you'll be stowing your generator for quite a long time without running it, make a point to purge the fuel tank and keep fuel close by. A distinct option for depleting it is to add some fuel stabilizer to the current fuel and run the generator, permitting the stabilizer to flow. In any case, make a point to top off some fuel jars if a tempest is en route with the goal that you can keep the generator experiencing the force blackout. Additionally make a point to store them securely, in light of the fact that risky stockpiling can be much more terrible than not having force.


Change your generator oil, and keep additional close by


In a generator, the oil is pretty much as essential as the fuel. The oil keeps the parts moving easily, which is imperative for a bit of apparatus that may should be keep running for quite a long time or even days on end. Ensure the oil is perfect and thick, with practically zero dregs. Likewise make a point to keep a couple of additional quarts close by, as a few generators will consequently close off on the off chance that they recognize low oil. This is extraordinary as far as sparing the motor, however will bring about the loss of force when it might be required.


Check replaceable parts


Much the same as whatever other little motor, the sparkle attachments, fuel and air channels, and carburetor all should be stayed away from develop and in great working request. Keeping additional flash fittings around is a smart thought, in the event that they would quit starting in a crisis. The channels ought to be taken a gander at occasionally, while the carburetor ought to be cleaned just when fundamental, as it can require a careful tear-down for cleaning. Additionally, keep some additional o-rings and repair parts around just on the off chance that you would need to make a fast repair to the generator.


Keep in mind to utilize your generator securely and ensure that there is legitimate ventilation. Generators ought to dependably be keep running in a range autonomous of the primary living space to maintain a strategic distance from carbon monoxide harming, as there are cases each year of carbon monoxide harming and fatalities from running generators in encased spaces. Be protected, and keep the force o

Maintaining your Portable Generator

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!

Nebulized Colistin & Join Pain?

zythromax long term?

Hi. No diagnosis yet for my 8 yr old daughter. Just had more blood work done today. Waiting on results of PCD panel. Depending on results, will see CF doc in WI or head to indy or cincy. So, daughter was sick recently. Xray showed probable partial lung collapse and possible pneumonia again. Trying to get sputum sample from her. Pulm wants her on zythromax MWF all winter. I don't know what dose but pharmacy double checking before dispensing b/c high dose. I guess this is used as preventative for inflammation. Anyone heard of this?

zythromax long term?

I'm 36!

Holy Cow! I'm 36 today, folks! PFTs 96%. STILL GOING! CF WON'T TAKE ME DOWN JUST YET!

<3

I'm 36!

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 mask can help prevent influenza. And using a surgical mask and an alcohol-based hand sanitizer was shown to reduce the number of influenza-like illnesses in a group of students living in a college dormitory even more than using a surgical mask alone.

People who live in community housing — such as college dorms, nursing homes or military barracks — are at higher risk of influenza infection because they're in contact with more potentially infected people.

Flu viruses travel through the air in droplets when someone with the infection coughs, sneezes or talks. You can inhale the droplets directly, or you can pick up the germs from an object — such as a telephone or computer keyboard — and then transfer them to your eyes, nose or mouth.

Flu masks may help block airborne germs, and they may also prevent the transmission of germs from your hands to your mouth or nose. However, the best way to prevent influenza is to receive the flu vaccine, either via an injection or nasal spray.

With

James M. Steckelberg, M.D.

Wearing masks in public may help wearer from getting flu

Working on disability - SSDI

Can anyone relate recent experience with working while on SSDI? Have you been audited by SSA as a result?

Working on disability - SSDI

Fascinating back story on vertexs step into cff

http://ift.tt/1X9iclo

Fascinating back story on vertexs step into cff

NSAIDs inhibit ovulation

I think this is worth posting in the Pregnancy forum, as people with CF are often put on a regimen of Ibuprofen. It was not one of the three NSAIDs tested, but it's perhaps relevant nonetheless, especially at the CF dose. And even for CFers not trying to conceive, this may help understand your cycle and it's relationship to your meds (as well as things like weight, stress, and infection).

http://ift.tt/1Vb2gUa

"The women were assigned to one of four treatment regimens: diclofenac 100 mg/day, naproxen 500 mg twice daily, etoricoxib 90 mg/day, or placebo.... 'All control patients on placebo ovulated, but ovulation was far less frequent in patients who were on NSAIDs,' Dr Salman reported."

NSAIDs inhibit ovulation

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 have it longer, he's particularly worried about optic neuritis.I've not had any visual problems, but do get peripheral neuropathy in my feet, which mostly wears off when I stop it, though I have some residual tingling.
Apparently new guidelines for abscessus in cf are due to be released soon and will suggest longer term linezolid at 300 mg.
I'd just be interested to know if people have taken it for long periods,what dosage? what monitoring if any of your vision have you had? have you had side effects?

Just want to add that I'm in awe of all of you. I had good health till I was 50, can't imagine how you have lived with this since childhood and stayed so positive.

long term linezolid

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 Communication - FDA Recommends Health Care Facilities Transition to Alternate Reprocessing Methods
AUDIENCE: Risk Manager, Gastroenterology, Pulmonology, General Surgery
ISSUE: In accordance with a Consent Decree entered in January 2007 with Custom Ultrasonics, the FDA ordered Custom Ultrasonics to recall all of its Automated Endoscope Reprocessors (AERs) from health care facilities due to the firm’s continued violations of the Federal Food, Drug, and Cosmetic Act (FD&C Act), applicable regulations, and the Consent Decree. FDA is recommending that health care facilities currently using Custom Ultrasonics AERs transition away from their use to alternative methods to reprocess flexible endoscopes as soon as possible.
As part of the FDA’s ongoing investigation into infections associated with reprocessed medical devices and AER devices used for cleaning and disinfection, the FDA has been reviewing the validation test methods and performance data for all AER manufacturers. To date, Custom Ultrasonics has not demonstrated that its AERs can adequately wash and disinfect endoscopes to mitigate the risk of patient infection.
The FDA’s most recent inspection of the Custom Ultrasonics’ facility in April 2015 documented continued violations. Violations include the inability to validate that the AERs can adequately wash and disinfect endoscopes to mitigate the risk of patient infection. The identified violations could result in an increased risk of infection transmission.
BACKGROUND: AERs are free-standing units used in health care facilities to disinfect flexible endoscopes and scope accessories between uses. Custom Ultrasonics AERs are intended to wash and high-level disinfect cleaned flexible endoscopes used in gastrointestinal and pulmonary tracts.
RECOMMENDATION: The FDA recommends that health care facilities currently using Custom Ultrasonics AERs transition away from their use to alternative reprocessing methods as soon as possible. Facilities are advised to:

• Identify and transition to alternate methods to reprocess flexible endoscopes, such as manual high-level disinfection, liquid chemical sterilization, alternative AERs, or other cleaning and sterilization methods according to the endoscope manufacturers’ reprocessing instructions.
• Before transitioning to an alternative method, be sure that the endoscopes your facility uses are compatible with the alternative method by referring to the endoscope manufacturer’s reprocessing instructions.
• Submit a report to Custom Ultrasonics and to the FDA via MedWatch, as described below, if you suspect your health care facility’s Custom Ultrasonics AER has caused or contributed to patient infection.

Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA's MedWatch Safety Information and Adverse Event Reporting Program:

• Complete and submit the report Online: www.fda.gov/MedWatch/report
• Download form or call 1-800-332-1088 to request a reporting form, then complete and return to the address on the pre-addressed form, or submit by fax to 1-800-FDA-0178

Health care personnel employed by facilities that are subject to the FDA's user facility reporting requirements should follow the reporting procedures established by their facilities.

the recalls we never learn about!

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.

Pseudomonas Aeruginosa Erradicated

Please help!!!

i HAVE A 14 YEAR OLD SON THAT HAS HAD HEALTH PROBLEMS HIS WHOLE LIFE. HE HAD RSV WHEN HE WAS A FEW WEEKS OLD, FAILURE TO THRIVE AT A COUPLE MONTHS OLD AND PNEUMONIA EVERY WINTER FROM AGE ONE UNTIL ABOUT 11. WHEN HE WAS 4 WE NOTICED HE WOULD WHEEZE AND STRUGGLE TO BREATH WHILE WATCHING TV WHICH WE THOUGHT WAS WEIRD BUT WOULD ALWAYS SELFCORRECT IN A FEW SHORT MINS. AFTER A FEW MONTHS WE NOTICED THAT HE WOULD STRUGGLE TO BREATH AND THEN WOULD END UP IN THE BATHROOM WITH DIARRHEA.....EVERY SINGLE EPISODE!!!! IT STARTED OUT HAPPENING ONCE A MONTH AND PROGRESSED INTO 2 OR 3 TIMES A WEEK. WE TOOK HIM TO MULTIPLE DRS AND HOSPITALS AND HE HAS HAD EVERY TEST DONE KNOWN TO MAN. NOBODY HAS ANY IDEA WHATS GOING ON. WE NOW REFER TO HIS EPISODES AS ATTACKS BCUZ THATS EXACTLY WHAT HAPPENS TO HIM. SOB, DIARRHEA, FEVER, SPO4<80, HIVES (OCCASIONALLY), EXTREME PAIN, TONS OF MUCUS. IN THE LAST 10 YEARS THERE HAVE BEEN TIMES WHERE HE WILL GO SYMPTOM FREE FOR A FEW MONTHS AT A TIME, BUT IT ALWAYS REBOUNDS AND HITS HARD SOON AFTER. HE HAD A SWEAT TEST DONE BUT HE HAD A NEGATIVE RESULT. ALLERGY TESTS SHOW HE HAS NO ALLERGIES TO ANYTHING, NOT EVEN LEVEL 1 ALLERGIES, YET HE ALWAYS HAS A RUNNY STUFFY NOSE AND SNEEZES ALL DAY LONG. IVE ASKED HIS DRS AND HIS PEDIATRICIAN SAYS ABSOLUTELY NOT, BUT HIS GI MD HAS SAID ITS A POSSIBILITY. MY SON IS TO THE POINT THAT HE DOESNT WANT ANYMORE TESTING DONE!! HES SICK OF GETTING NO ANSWERS AND HE SAYS HED RATHER SUFFER THROUGH IT THEN SIT IN A HOSPITAL FOR WEEKS AT A TIME. I GUESS WHAT IM WANTING TO KNOW IS IF ANYONE THINKS WE ARE HEADING IN THE RIGHT DIRECTION....I DONT WANT TO PUT HIM THROUGH ANYMORE UNNECESSARY TESTS IF I DONT HAVE TO. ANY HELP WOULD BE APPRECIATED. IM SICK OF HEARING THAT IM A PARANOID MOM AND THAT MY KID IS FINE!!! PLEASE HELP!!!

Please help!!!

aquADEKS on Ebay

In Europe and Canada, the aquADEKs multivitamin drops (pediatric) is no longer available. In Europe there is still no substitute.
I would like to know if there are aquADEKs available in USA.
I found aquADEKS drops for sale on ebay (bluemedical) but I'm not sure if the product is still on production.
Is it possible the aquADEKs for sale on ebay is not the original?
Someone has any knowledge about this?

aquADEKS on Ebay

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

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Cystic fibrosis smartvest airway clearence vest machine

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 it was just too hard. I left work at the end of July, and am currently receiving temporary disability and exploring Social Security.

It's been a real struggle slowing down my life, but I've also been struggling against my doctor. He's pressured me not to give in to the "disability label," and to work part time instead of full time. The thing is, part time work isn't going to pay the bills, especially if I keep going out on IVs for 3 weeks every 6 months or so. My hope is that I can get Social Security, and then have the freedom to work part time while still having a safety net when I get sick. In the meantime though I'm having a lot of insecurity about my decision, and often feel like I'm just being a baby and should push through this.

I'm wondering if anyone else on disability/social security can tell me about where they were at health-wise when they made the decision? Also, how do you cope with the loss of structure and purpose to your day? I don't have a partner or children, so my job was really the main focus of my days. I'm having a very hard time motivating myself to get out of bed each day, because my schedule is usually empty. Fortunately I have a good therapist helping me work through these changes, but I'd love to hear from others who are dealing with this.

Thanks!

Eliana

Surviving on Disabilty

Smartvest SQL by Electromed inc. for sale (machine and cord only)

Hi, I have Smartvest SQL for sale. Works great, it has 84 hours of use. By Electromed inc. Please email me with offer.
Thanks Email:
Urkidn@sbcglobal.net

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Smartvest SQL by Electromed inc. for sale (machine and cord only)

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:
http://ift.tt/1QeBnev

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) that FEV isn't a great marker for whether the drug works. And if they are able to find other markers to show it works, it could mean more can benefit (i.e., heterozygotes or non df508), because it can show other benefits beyond FEV to establish it is working. And this would be true for other drugs in the pipeline throughout the biotech field.
fwiw

Interesting new clinical trial for 661/Kalydeco

Dumped because I have CF...

Unfortunately another relationship has ended for me because the person I was dating decided they didn't want to deal with my CF. This is the third time this has happened to me. I do understand that asking someone to take it on is a big challenge for them and I don't want to be with someone who won't be happy. However I am now beyond scared to get rejected again because of something that I can't control. I've talked to my therapist about this but I don't feel she gets it. Those of you who are married or in a relationship, what have you done to make it work? I'm beyond lost at this point. I'm healthy for the most part and I'm open and honest about what's going on with me. Those of you who have spouses with CF, what advice can you give in telling someone about CF and how to help them understand what's involved.

Dumped because I have CF...

body image

our 15 yr old girl is obssessed with thinking she is fat. she is right about the size the doctor wants her to be. she does get a slightly puffy stomach after she eats. the orkambi hasn't helped because she hates eating food with fat in it. she doesn't care about whether it is a healthy fat. we have gone round and round over her treatments the last few weeks. any suggestions?

body image

How do I delete a post?

How do I delete something I posted?

Thanks!

How do I delete a post?

Depression & anxiety (a new way to cope)

Hey everyone :) Hope you all are having a good if not decent week. I can't believe it's November already! Feels great here in Cincinnati today. Unseasonably warm at 73 degrees. Wish it would stay that way. Anyway,

We get a lot of posts asking about how to deal with depression & anxiety so I thought I would post this in hopes of possibly helping a few people if any. Adult coloring has become insanely popular recently. I've seen coloring books everywhere I go so I decided to give it a try. You don't even need artistic talent to color! Coloring is for everyone. It's cheap and easy. There are simple designs available as well as more intricate ones. I suggest starting simple to avoid being too intimidated. Color with whatever materials you feel comfortable with. I've been using gel pens but I also love colored pencils. I would suggest starting with a set of 24 pencils to get a good variety of colors

Instead of sleeping all the time I've been coloring the past few weeks. It's even more relaxing if you light some candles and listen to soothing sounds or music. Rain, waterfalls, the ocean. Give it a try! You can frame your finished piece and display in your home or give as gifts.

Here are some examples I've done so far...






Currently working on this one. These designs are from the Mystical Mandala coloring book. You can get here:http://ift.tt/1WzXBvE

Depression & anxiety (a new way to cope)

Daughter has PCD- Primary Ciliary Dyskinesia

I recently posted a thread about my 7 year old daughter. She has symptoms of CF but very low sweat test results. One of you nice people posted about PCD- and that is exactly what the Pulmo Dr thinks she has. Everything that is written about PCD relates it to CF and says the treatment is identical and problems are similar- just caused by different disease. No wonder it was so confusing!

She's have CT of lungs next week, along with bronchoscopy. We're starting the acapella device today. Saline breathing treatments. Continued treatment for asthma- although at the moment the immunologist and pulmonologist think she may not even have asthma.

The diagnosis today was preliminary. There is still some question as to her immunity because she's not showing immunity to certain imunizations that should be responsive. So there could be some underlying immunodeficiency going on in addition to the possible PCD.

They will do genetic testing on her in December. And interestingly, some of the faulty genes for PCD are the same as for CF!

I'm going back and forth between being excited at getting a possible diagnosis finally and crying because my baby really is sick. I kept secretly hoping the doctor would tell me she was fine and I was just overly worried. I feel vindicated that my gut was right- and devestated to know she's very sick and it will never be gone.

I really appreciate this forum and those who've posted.

Daughter has PCD- Primary Ciliary Dyskinesia

New Sodium Chloride Clinical Trial

Anyone's child in the new clinical trial for a new sodium chloride neb treatment? DS13 has an appt next week to see if he is eligible. It only lasts 4 weeks: 2 weeks off sodium chloride, and then 2 weeks in the trial for the new med.

New Sodium Chloride Clinical Trial

I need to find someone who did a full gene scan before 2006 to find their mutation

Someone I know needs to prove that this test was available before 2006 for their litigation against the genetic counselor who told them the father wasn't a carrier. Any replies would be deeply apprciated - either to this thread or please PM me.

Thanks so much!

I need to find someone who did a full gene scan before 2006 to find their mutation

terrible adhesive allergy, possible iodine allergy connection?

My daughter has terrible reactions (not just a little redness...I mean blistering, weeping) to the tegaderm and adhesives associated with the tune ups and PICC line. She also broke out all over her chest last year in what I think was an allergic reaction to the cleaning agent they used for appendectomy, possibly betadine? Iodine? Does anyone know if there is a link? Please, does anybody have any helpful advice, new products, ANY input on this? Tune up is coming, and we are nervous. Thank you for your help.

terrible adhesive allergy, possible iodine allergy connection?

What is your dream hospital?

Having CF we can't avoid going in the hospital and since we've got to be there for so long it can get old really quick. What do you envision the hospital having to make the best stay for CFs? And how does it compare to what's at your current hospital?

I can't really say how things are for the CFs cause I just moved and honestly don't know. But I think what would make a great stay would be snacks, treadmill, DVD player, video game system, movies, small refrigerator, ect .....

What is your dream hospital?

Anyone go to Tulane in New Orleans?

I moved and the center I'm going to be going to is Tulane. Does anyone go there? I have an appointment with the doctor next week and I'm pretty sure I'm going to be admitted to the hospital. I put this in this thread because I would like to know what it's like being in the hospital there. Anything you can tell me about being a patient there I'd appreciate.

Anyone go to Tulane in New Orleans?

I had an idea.. fitness wearable to help CF in all ways

So I think using some software, some sensors -> specifically the newer technology out (sensors) we can make fitness bands that are specific to CF (but could help others!). And the best part is, I think if we can measure and interpret the data correctly, we can provide CF users with accurate information based on the sensors, which can help improve the quality of life (or help us predict potential failing points in our body). The technology is limited (i don't think it can predict PFTS... yet), but it's just an idea that we may be able to exploit the new sensors that are being introduced into society for our benefit as a CFr. Here's what I got so far on this idea:

Generalizations:
-Fitness wearables are steadily increasing in tech, and I think it can help us manage our life with CF
-I think with the right data, you can predict when your body is "losing" the CF fight, which could help with intake of more nutrients and increase of treatments
-Fitness wearables aren't THAT expensive
-The tech is there, the data is not.

Background:
I've been doing a lot of reading tonight on the Bioimpedance sensors included in the UP3 fitness bands. These bands are new (and so is the tech) and I think we can utilize them to help us make informed decisions based on our data (compiled over time). I think this because the sensors can measure different variations in Oxygen in your blood by measuring and manipulating the electric energy in our system. I think if we used sensors in key locations that we could potentially be able to log and collect data that will tell us CHANGES in that kind of data. What do I mean? Well basically there are new fitness bands that will emerge that will allow us to collect data using electronic sensors. It uses safe frequencies to transmit data from one sensor to another, and measures the changes in the frequency. I know a little bit about this from my research tonight but there is still ALOT to learn. They use sensors in electrons when monitoring various functions for complicated surgeries like brain and heart surgery according to my friend whose wife specializes in this field of medicine! Such exciting technology. So, what do I think we can do for a CFr? I think we can measure heart rate, combined with the advanced sensors to tell us advanced data about our blood and body. I _think_ we can use this data in an evolutionary way to potentially predict or detect problems. Why do I think this will work? I think we can all agree that in today's society, we just don't have enough data about our bodies. I think fitness wearables can help us with this and already are. You can wear one to tell you how you are sleeping, they can track your heartrate to tell what stage of sleep you are in, right now. That cool data, presented in the right away can be used to establish baselines and help predict declines so you can make educated decisions based on this data.

What's a Bioimpedance sensor?
Jawbone’s new UP3 wrist band uses a single bioimpedence sensor to cover three bases: heart rate, respiration rate, and galvanic skin response. According to the company’s own blog post explaining the technology, “The sensor measures very tiny impedance changes within your body. For heart rate, we are measuring the impedance changes created by the volume of blood that is flowing in the Ulnar and Radial arteries.”
The same sensor, worn around the wrist, will also be able to tell respiration and hydration by looking at metrics like oxygen in the blood. It does this by using four electrodes that drive a tiny bit of electrical energy to each other, and then measuring the results.


Source: http://ift.tt/1LLj9x7
More reading for Up3's tech: http://ift.tt/1Q4YLKw

Are there other things that use the biosomethingoranother sensors? Well I found something called an AngelSensor, which was funded by Indiegogo and is being released to the public as an OPEN SOURCE platform. This seem to be the most promising for my cause, as the other devices won't have the ability for users like myself to really develop anything to help.


OKAY so I know this is a lot to read, and this is a lot to explain. I am assuming at this point in my post you are either genuinely intrigued or confused, and it's really based on my explanation. Given how excited I am to type this to you all, I will assume that I did a subpar job. Here's what I'd like from you: Opinions.

Please answer my quick questionaire and if you'd like to reply privately, PM me!

1. Do you use any fitness bands? Do they help you with your CF?
2. Do you think that a CF-ready kind of fitness band would be helpful to you?
3. What kind of things would you really like to see out of a fitness band? (Think big!)
4. What kind of DATA do you think we can use to help make the life of a CFr better?
5. If this was available to you, at no cost, how do you think this would help?
6. Any other thoughts or opinions?

TLDR: Here's the quick summary:

I think we can use fitness bands to help with CF. I think this because the sensors coming out in the massproduced fitness bands will enable us to collect data and make informed decisions based on the combined collected data, such as heartrate, blood oxygen levels, blood oxygen saturation, and other data! We can utilize this based on our input of data (PFTs, summary of how we feel) and MAYBE, we can help make our lives easier, and collect data for people with much more funding and time, to help other CFrs for years to come.

I had an idea.. fitness wearable to help CF in all ways

If you are lucky enough to have health insurance

If you are lucky enough to have health insurance, you can contact them and take your insurance and contact information primary care, asking for the names of several family practitioner can make things a lot easier. Your insurer has called them, because they automatically assume that you and your loved ones will be for the best suppliers weight loss for men.

If you are lucky enough to have health insurance

People dentists, optometrists, and have direct access

People dentists, optometrists, and have direct access to these services and physician, or other means, which should not be approached reference source. This is the flip side of the head, Henderson Chiropractorexperts during the investigation; they are effective for the musculoskeletal system, such as primary health care providers do not have to report. They are well educated in nutrition and general health, experts of the musculoskeletal system in most of the first four. People dentists, optometrists, and have direct access to these services and physician, or other means, which should not be approached reference source. This is the flip side of the head, Las Vegas Chiropractor experts during the investigation; they are effective for the musculoskeletal system, such as primary health care providers do not have to report. They are well educated in nutrition and general health, experts of the musculoskeletal system in most of the first four.

People dentists, optometrists, and have direct access

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

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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?