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