Dating another CF person
Just curious if anyone else has dated or is dating another person with CF? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 28, 2015 Category: Respiratory Medicine Authors: semnle34 Tags: Adults Source Type: forums

Report from Europe: Ivacaftor Real World Results
http://www.cysticfibrosisnews.com/iv...m_medium=email (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 28, 2015 Category: Respiratory Medicine Authors: Imogene Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Vest system 103
Has all tubes cords and an adult medium vest, 550 takes it (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - July 28, 2015 Category: Respiratory Medicine Authors: Andrea Phelan Mercure Tags: Airway Clearance Techniques Source Type: forums

Tube Feedings versus "Blenderized Diets"
I have had a g-tube for many years and without it I just can not gain weight. I also have been an advocate to use your g-tube to your nutritional advantage. http://forum.cysticfibrosis.com/thre...159#post911159 I struggle like all of us but recently I discovered an entire community of "Blenderized Diet" tube feeding advocates and feeling re-empowered to take this g-tube feedings to the next step. Curious to see if others with CF and a G-tube are doing this? 248774.jpg"Let food be thy medicine and medicine be thy food.” ― Hippocrateshttp://www.foodfortubies.org/ Feeding Tube Awareness Foundation ...
Source: Cystic Fibrosis Adults Forum - July 27, 2015 Category: Respiratory Medicine Authors: rmotion Tags: Adults Source Type: forums

Clinical question of the week: HCM part 1
A 35 year old patient presented to the emergency department complaining of one episode of syncope while walking. He does not remember details of the episode, but he mentioned full recovery only a couple of minutes after the event. He reported no known diseases, no smoking, drinking or drug use. His family history included an older brother who died suddenly while sleeping at age 38. On physical examination the heart rate was 66 bpm, BP was 140/92 mmHg, respiratory rate 14, temperature 36.2oC. SatO2:97%. Lungs were clear. Heart auscultation a systolic murmur (++/4) was noted on the left sternal border. The ECG show...
Source: Doc2Doc BMJ Cardiology - July 27, 2015 Category: Cardiology Authors: MBittencourt Source Type: forums

Stenotrophomonas maltophilia
Hi. Has anyone been colonised with Stenotrophomonas masltophilia. What are your symptoms? What are you treated with? Did it eradicate it and if so how long did it take? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 26, 2015 Category: Respiratory Medicine Authors: chrissie9000 Tags: Adults Source Type: forums

Mystery illness - seeking opinions
Hi! I guess I am just looking for opinions on whether or not I should seek CF testing. I'm sorry this is so long! Thank you in advance to anyone who can offer some advice. I've been "sick" on and off for a few years now. As a child I had strep throat A LOT until my tonsils were removed. I was also suspected to have asthma. I don't know how it was decided I didn't. I cleared my throat absolutely constantly but to my knowledge this was not investigated. As a preteen I had a heart murmur that apparently went away and had a couple fainting episodes and was diagnosed with syncope. I was pretty healthy through my t...
Source: Cystic Fibrosis Adults Forum - July 25, 2015 Category: Respiratory Medicine Authors: Rtn87 Tags: Adults Source Type: forums

Hypertonic saline mixed with other medications in the same neb session
Is it ok to mix hypertonic saline with other medications in the same neb session? My DD is on Combivent (Ipratropium bromide + albuterol sulphate) and pulmicort (Budesonide) and I was wondering if we can mix the HS with them or should we do it seperately? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - July 25, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums

Mobilaire compressor switch broke?
We've had our Mobilaire compressor for nebs for 4 years. This morning it would not shut off. The switch on the back would not shut the machine off when switched in the off position. Anyone had this happen before? I unplugged it to shut it off. The motor is completely fine. Shows how well it works when a switch breaks before the motor. Anyway, guess we'll need a new one... (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 25, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums

Bleeding - Rifampin???
I am currently on Rifampin, ethambutol and Azithromycin to treat MAC. Over the last two weeks I have had blood in my stool 3 times, bright red. Rifampin is known to cause bleeding as a side effect. Has anyone experienced this while on rifampin? Did you discontinue it right away? Thanks for your help......I will be seeing a GI specialist soon. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 24, 2015 Category: Respiratory Medicine Authors: 4hats Tags: Adults Source Type: forums

Anyone started IV antibiotics instead of orals for their first ever infection?
I was wondering if any of you were ever put on IV antibiotics for your first infection? My daughter is 4 years old, was diagnosed with CF at birth by newborn screening and has been very healthy since. She recently started coughing (about a month ago) and her doctor insisted on doing a sputum culture before prescribing her anything. It was a very hard couple of weeks trying to teach her how to cough sputum and then finally we were able to do it. She cultured Hemophilus Influenzae and her doctor immediately wanted to admit her and give her IV's for 10-14 days (she also developed a low grade fever 2 days prior to the culture...
Source: Cystic Fibrosis Families Forum - July 23, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums

Rumor mill churning re: Vertex drugs
Hi all! I have recently read a few somewhat concerning things on social media regarding Kalydeco, that I had not previously heard anything about. Instead of spending hours googling trying to glean info, I thought I'd ask y'all (I say y'all now) on here because we have so many super knowledgeable folks. Because I want to get correct info and not perpetuate what is, perhaps, false info, I want to clarify that these things I have read came from peoples' personal facebook posts about it. These aren't from news stories or journal articles etc. Anyway, the first thing I heard is that many people (men and women) on Kalydeco ar...
Source: Cystic Fibrosis Adults Forum - July 23, 2015 Category: Respiratory Medicine Authors: triples15 Tags: Adults Source Type: forums

help building muscle post lung transplant
So I had a lung transplant in 2004 11 years ago, am 39 now, male, with CF, I feel like Im a good weight considering my size and don't necessarily need to put on any more just general weight but do want to put on some muscle weight. Can anyone direct me to a good routine of getting into? I do have some dumbbells and weight bench, which I occasionally do but need a good plan on getting more muscle in my arms and legs. Or maybe some of you with CF who work with weights can give me some insight on doing this. Thanks - See more at: http://forum.cysticfibrosis.com/thre....sQneMV7J.dpuf (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 21, 2015 Category: Respiratory Medicine Authors: thisisme Tags: Adults Source Type: forums

Climbing for a Cure! Mt. Kilimanjaro 2015!
Hello everyone, I am trying to reach out to as many CF patients/families as possible! I am a mother of a cystic fibrosis patient who is fundraising for the Cystic Fibrosis Foundation. I am climbing Mt. Kilimanjaro in December of this year. I am traveling alone from Southern California and will be meeting with a group of climbers in Africa. I would love if people could help spread the word as I would like this to be a big fundraiser! Mt. Kilimanjaro is Africa's highest peaks at over 19,000 feet. I will be climbing for 7 days on the Machame route. I am very excited I am able to take part in such a big idea. Kaiser Permanen...
Source: Cystic Fibrosis Community Initiatives Forum - July 21, 2015 Category: Respiratory Medicine Authors: Bellithorp Tags: Community Initiatives Source Type: forums

a note from Tim Wotton What is on your Bucket List?
Dear all, Heads up that I feature (filmed on the London Eye discussing my battle with CF and daily mind-set to appreciating life) in a BBC Wales documentary ‘Before I kick the bucket’ as a young lady with cancer, Rowena Kincaid, looks into whether she will write her own 'bucket list'. http://www.bbc.co.uk/programmes/b063034k It's on this evening, 21 July, at 10.35pm on BBC One Wales (Virgin 864 and Sky 952) with the hope that it will be picked up and shown on the main BBC networks soon. Rowena was on BBC breakfast TV this morning... If you are unable to view it in real-time, you can see it via the link above from to...
Source: Cystic Fibrosis Adults Forum - July 21, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums

residual function & Kalydeco news
Hi all, Does anyone has any news on the pilot study of Kalydeco and residual function mutations? On clinicaltrials.gov website it says completed and has results, but i have trouble deciphering the actual results. Maybe anyone had beteter luck? thanks (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 21, 2015 Category: Respiratory Medicine Authors: ymikhale Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

xray showing even more nodules in my lungs and mucus plug still there and more
I went to doctors the other day cause I was really not breathing good rember I just got out of hospital bout maybe 2 months so did pft was low at 52 usually my base is 58 so I was worried then he argued with me over having pluracy I told him it was ur staff in the hospital that said I had it then I went to er they said I had it and je said I have mucus in there but not a plug agian I told him it was his team who told me and showed me on the xray the plug. This is a new adult cf doctor they have now my first time goin cause they just made a adult cf dept but I have seen theae guys before while in hospital anyway he didnt th...
Source: Cystic Fibrosis Adults Forum - July 20, 2015 Category: Respiratory Medicine Authors: cam Tags: Adults Source Type: forums

CRMS and Culture results
My 1 year old son has a CRMS dx. He just had a clinic appointment a week and a half ago which resulted in a second negative sweat. Our pulm said at the appt that he appears to be healthy - clear lungs etc. She called yesterday to tell me that his culture results came back positive for staph, Chryseobacterium Indologenes, and Acinetobacter Baumannii but that because he is appearing healthy and has a negative sweat that they are nothing to be concerned about. Today he started having a running nose. He's 12.5 months so my first thought was teething. But as the night has progressed he has been seeming to be having some respi...
Source: Cystic Fibrosis Families Forum - July 19, 2015 Category: Respiratory Medicine Authors: emason Tags: Families Source Type: forums

help building muscle post lung transplant
So I had a lung transplant in 2004 11 years ago, am 39 now, male, with CF, I feel like Im a good weight considering my size and don't necessarily need to put on any more just general weight but do want to put on some muscle weight. Can anyone direct me to a good routine of getting into? I do have some dumbbells and weight bench, which I occasionally do but need a good plan on getting more muscle in my arms and legs. Or maybe some of you with CF who work with weights can give me some insight on doing this. Thanks (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - July 19, 2015 Category: Respiratory Medicine Authors: thisisme Tags: Exercise & Fitness Source Type: forums

when did your symptoms start to show?
Now I know everyone is different..... different mutations, and even the mutations though may they may be the same. Affect the persons differently. But I was wondering as a oarent of one w/ cf (ddf508) well when did you start showing your symptoms? How when the cough realky started forming? Are there any ddf508 that are can digest food? What types of excercises do you do? Anyone on kyldeco, or other and gotten better? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 17, 2015 Category: Respiratory Medicine Authors: lrs2015 Tags: Adults Source Type: forums

transporting your nebs/meds
Hi all! How do you carry your nebulizers and medicines around? I travel overnight a lot so transporting all my stuff and trying to keep it clean and safe is a big thing! How do you manage it? I usually just let it jumble around in a plastic bag but I'm sure there's a better way. I'm talking breathing treatment stuff..inhalers, nebs, the meds themselves. I'd love to buy some kind of holder or something that's specialized for holding multiple nebulizers and liquid meds but I don't know where I'd find one, price, etc. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 17, 2015 Category: Respiratory Medicine Authors: sasha Tags: Adults Source Type: forums

Foods that make you FART...lol
(FART) Just wondering as to what foods make you gassy/fart. My choice of food is Hot Dogs!! LMAO (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 16, 2015 Category: Respiratory Medicine Authors: Cutecurlz Tags: Adults Source Type: forums

Immunosuppressant meds
Does anyone know how being on an immunosuppressant could effect cf? I have an auto-immune condition and my neurologist is contacting my cf clinic to find out if it would be ok to start me on one. I just wondered if anyone had any experience with this? thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 16, 2015 Category: Respiratory Medicine Authors: meech Tags: Adults Source Type: forums

Cycle for Life. (Cyclists!)
Attention Cyclists!...Plenty of time to get a team together. Join a team or Find your local chapter and donate. I love the name of my local team. The Sputum Spinners! lol :D http://fightcf.cff.org/site/PageServ...me=cy_homepage (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - July 16, 2015 Category: Respiratory Medicine Authors: beautifulsoul Tags: Exercise & Fitness Source Type: forums

For those with kids taking Orkambi
Hi All, I am the mother of an 8yr old with CF. She is DDF508 and is in a trial for Orkambi now. I know 100% she is on the drug but I don't know the dosage. Her health is great right now (knock on wood). She is gaining weight, her activity level is great, and no coughing at all. While I want to believe Orkambi is having an impact it could also be due to the fact that she is out of school and away from sick kids and is swimming every day. If your kids are on the drug what are you seeing in terms of impact? Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - July 16, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums

For those taking Orkambi....how has it impacted you?
Hi All, I am the mother of an 8yr old with CF. She is DDF508 and is in a trial for Orkambi now. I know 100% she is on the drug but I don't know the dosage. Her health is great right now (knock on wood). She is gaining weight, her activity level is great, and no coughing at all. While I want to believe Orkambi is having an impact it could also be due to the fact that she is out of school and away from sick kids and is swimming every day. I would love to hear what others are experiencing and how it is impacting your health. Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 16, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Adults Source Type: forums

Just found out daughter has Mycobacterium Abscessus
We just found out my daughter 11 has mycobacterium Abscesses (not MAC which she has also cultured in past but now apparently clear) and will start the treatment process soon. right now they r recommending IV Amikacin, IV imipenem, and azithromycin for at least 5 weeks (up to 3months) until cultures clear. Her pfts are still in the 80s/ low 90s, but it's still a drop from her baseline of over 100 last year. Do you have any advice as we start this journey? We are thinking of doing a port instead of PICC due to the potential length of time. I am starting my research on treatments and these medicines.... Seems like they want ...
Source: Cystic Fibrosis Families Forum - July 16, 2015 Category: Respiratory Medicine Authors: mep65 Tags: Families Source Type: forums

Saw this and I had to share. People experience running like they have CF
https://youtu.be/8OALfJWS8jE (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - July 15, 2015 Category: Respiratory Medicine Authors: kenna2 Tags: Families Source Type: forums

changing the way we talk about transplant
hi all, wanted to share a blog i wrote for the CF Lifestyle Foundation. Hope you like it and comments welcome. :) http://www.cflf.org/blog/unthinkable-transplant Caitlin (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - July 15, 2015 Category: Respiratory Medicine Authors: kittencaitlin Tags: Transplants Source Type: forums

best friend of over a decade is declining...
Hi all. I guess this is the kind of place to talk to people about this. Even a month ago I would never have thought about looking for resources like this forum. My very closest friend of the last decade, who I consider a sibling, has CF. She is 100% my family and I love her dearly. We met in 5th grade and I'm now a junior in college. Even though my college is two hours away we text pretty much every day. Every one at my university knows who she is.(L) She, however, has stalled out at home and stopped doing her treatments. Throughout our friendship she has gone in the hospital about twice a year, once if it's a great year...
Source: Cystic Fibrosis Families Forum - July 14, 2015 Category: Respiratory Medicine Authors: xenadog Tags: Families Source Type: forums

SSI after transplant
Has anyone been successful retaining SSI/Medicaid benefits post transplant? We're four years out and although the surgery was successful, my son's is experiencing other complications--diabetes, multiple skin cancers, gall bladder removal, low weight and pulmonary function levels that are stable but not great. There is no way we could afford the 20 prescriptions he is on and full time work is out of the question. He is undergoing a disability review. Thoughts? (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - July 14, 2015 Category: Respiratory Medicine Authors: mackenziesmom Tags: Transplants Source Type: forums

Gene f508 and r117h ~7t
Im hoping someone can help me understand all this, my sons mutations were found at his new born screening he had a sweat test as a newborn and everything was in normal range they repeated the sweat test at age 6 months his chloride levels went up a bit so we went for another test at age 1 then his chloride levels were up even more and he was diagnosed with cf he is now almost 4 and has had no real issues with cf he has check ups every 3 months but nothing has ever really changed i have two other kids and he doesn't seem to really get any sicker then them. Im frustrated because he is on a vest twice daily with albuterol in ...
Source: Cystic Fibrosis DNA and Mutations Forum - July 14, 2015 Category: Respiratory Medicine Authors: Tiffany Kruit Tags: DNA and Mutations Source Type: forums

Recently diagnosed at 31
Hi! My name is Krystin, I'm 31 with two kids and here's my story. December 2012, I was at the beach enjoying myself in a hot tub. Two days later, I started coughing. Productive coughing. I assumed it was bronchitis and went along with my life for 6 weeks assuming it would go away on its own and not wanting unnecessary antibiotics. I broke a rib coughing, so it forced me to the doctor. Diagnosed with bacterial bronchitis and sent home with antibiotics. Nothing. Called the doctor telling them the cough was still present. Stronger antibiotics. Nothing. New doctor, new visit and given 2 antibiotic injections in my booty, stero...
Source: Cystic Fibrosis Newly Diagnosed Forum - July 13, 2015 Category: Respiratory Medicine Authors: Krysm3 Tags: Newly Diagnosed Source Type: forums

CFTR modulation for those with TWO copy's of DDF508?
OK me and my doc has talked about it and he said that i would be good for the new drug for the new gene therapy for the f508 dose anyone on here know anything about it if so please help me i cant find much online about it it kinda scars(VEST) me i have a wife and a 4 year old step son and i know what i was told was i could add years to my life witch is good but i am just scared a little bit so please help thanks so much and if you want to send it to me privet message to thanks again (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 12, 2015 Category: Respiratory Medicine Authors: Kris Salmons Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

twins
Hi ladies. Just wondering is there any females with cf that had twins. How was the pregnancy for you? Feedback would be really appreciated. I'm so excited but also so anxious and worried about a lot a things. Thank you in advance :-) (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - July 9, 2015 Category: Respiratory Medicine Authors: alfie Tags: Pregnancy Source Type: forums

Exercise or Albuteral - Similar Effects
Interesting article on the benefits of exercise for CFers. It contains links to recent research comparing moderate exercise to the effects of albuteral. One of the things I found most interesting though was the researchers recommendations for moderate exercise compared to light exercise or intense workouts. Bottom line seems to point to improved longevity, increased lung function and increase quality of life when your lifestyle includes sustained moderate exercise. Be sure to click on the research links for interesting info. http://cysticfibrosisnewstoday.com/2...enjoying-life/ (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - July 6, 2015 Category: Respiratory Medicine Authors: Gammaw Tags: Exercise & Fitness Source Type: forums

CF workout/running clothing
Our very own CFer Emily Schaller runs the Rock CF foundation and has some pretty cool "workout" shirts and pants for sale! Along with other novelty items like hats, mugs and water bottles. Check it out http://rockcf.storenvy.com I love this one! h/ Check the website for more colors. (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - July 5, 2015 Category: Respiratory Medicine Authors: beautifulsoul Tags: Exercise & Fitness Source Type: forums

Used Hill-Rom Vest
I recently received a lung transplant. I am looking to sell my used Hill Rom Vest model 105. It comes with the machine, vest, hoses, and the portable case. Anyone know where I can sell?? (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - July 1, 2015 Category: Respiratory Medicine Authors: Sammy Dowdy Tags: Airway Clearance Techniques Source Type: forums

Mac
I am a long time viewer, but first time writer on this site. My daughter- age 12, who has CF, just cultured positive for M. Avium complex (MAC) NTM for the third time in 12 months. I was told by the doctor two months ago, that if she cultured positive again that we could have a discussion on a way forward. Until last year, her PFTs were above 100%. 6 months ago, they went down to 80% and last month they were 90% -- better, but not back at her baseline. She is an active girl - swims and plays tennis competitively year round and generally feels very good. She has only been hospitalized once for pseudomonas, also in the last ...
Source: Cystic Fibrosis Families Forum - July 1, 2015 Category: Respiratory Medicine Authors: mep65 Tags: Families Source Type: forums

What I wish my teachers/ school counselor knew about CF
Hello to everyone! I am a school counselor in NC and am learning about CF in a course I am taking. As I have read through many of your posts, it seems that there are many things that your school system is lacking to implement, that would benefit you in your school setting. I know that there are IEP's, 504 plans, and health plans that can be beneficial in assisting you while at school, but I'm curious as to what we can do to help make the transition at school easier for you. Basically, what are some things that would could do from a school perspective, to better serve you? I'm interested in learning how to assist future stu...
Source: Cystic Fibrosis Teenagers and Young People Forum - June 30, 2015 Category: Respiratory Medicine Authors: schoolcounselor Tags: Teenagers and Young People Source Type: forums

First time poster w/question about isci and semen
hi i have cf diagnosed at 6 and i got married 2 years ago and i had a semen analysis recently and it came back they found no sperm but that was the usual pale colour, sometimes though theres a lot more more and its like very cloudy, is it possible that the difference is that there is some sperm in this one? and maybe i should test again and hope for that kind? (Sorry to be so descriptive but really want to know) also we have thought about ivf but we don't like the idea of embryos being destroyed is there A) a way to only make enough for that one trial and not have any made to destroy? B) i heard about isci is this a viab...
Source: Cystic Fibrosis Pregnancy Forum - June 29, 2015 Category: Respiratory Medicine Authors: Mikeymike Tags: Pregnancy Source Type: forums

ISO Large vest alone and or Vest with machine
Hello I'm in search of a Large Vest. Also if possible I'm in search of the vest machine. I lost my job a year and a half ago and don't have much money to work with but can get help from family for the shipping as long as its not very expensive. I have access to a family members machine but it would be easier if I had my own. Otherwise I would just need a large vest. (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - June 28, 2015 Category: Respiratory Medicine Authors: LisaMB_2013 Tags: Airway Clearance Techniques Source Type: forums

G1244E and DF508
I was wondering if there was anyone else out there with these mutations. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - June 27, 2015 Category: Respiratory Medicine Authors: LisaMB_2013 Tags: DNA and Mutations Source Type: forums

ANy parents with feeding tips and tricks?
Our dietitian recomended getting some avacados into our lil ones diet. It has all that good fat, high calorie, and vitamin and minerals that could be so benifical to her diet and well being. So I gave it to her and she gulfed down half of it. I also let it ripen a lil more. Since then she wants nothing to do with it. Loved it and now hates it. I don't get it. Lol. I've tried mixing it with other things. Has anyone gone through this and any recipes for what there lil ones liked? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 27, 2015 Category: Respiratory Medicine Authors: lrs2015 Tags: Families Source Type: forums

Vest For Donation
I know someone who has a barely used vest to donate. Her mother passed away about a month ago from a non-CF lung condition, it was her vest. It hasn't been used in over a year and her mother only used it for about 2 weeks so it is in excellent condition. She would like to donate the vest to someone with CF. It is made by RespirTech and purchased in March 2011. Here is the information she provided: Item 500008-000/HFCWO Air-pulse Generator System. Serial No. UD03M12. InCourage System Jacket kit size 40. Everything is included in kit - Filter, fuse, cord hose and case. Boxed and ready to go. The website is: inCourage®...
Source: Cystic Fibrosis Families Forum - June 27, 2015 Category: Respiratory Medicine Authors: Rosie55 Tags: Families Source Type: forums

Which air compressor do you use in the United States? Travelling there- need help!
We are coming to the United States (NY) for a couple of months and haven't been able to find an adaptor or transformer for our daughter's PARIBOY SX, so are wondering if we need to buy something over there to fit her LC Sprint nebuliser (we currently use hypertonic saline only). Any ideas? Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 22, 2015 Category: Respiratory Medicine Authors: Helenlight Tags: Families Source Type: forums

Fibrosis vest for sale
Vest has less than 60 hrs great condition 903-805-5164 (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - June 19, 2015 Category: Respiratory Medicine Authors: Renee Peters Chase Tags: DNA and Mutations Source Type: forums

Having another baby- how was your journey?
So I'm interested to know what people's experiences are with deciding to have more children after you've had one diagnosed with CF. I always thought we'd try naturally knowing that there was a possibility of having another with CF, but I've recently changed my mind to thinking IVF with PGD is probably the more sensible option. Our daughter (DDF508) is 3.5 now, and though I wouldn't change her or our journey so far, I think having any more children with CF would stretch us too far and impact what we are capable of giving to our children, to each other, and to our lives in general. Another option that my SO has put on the ta...
Source: Cystic Fibrosis Families Forum - June 18, 2015 Category: Respiratory Medicine Authors: Helenlight Tags: Families Source Type: forums

anyone have DeltaF508and p.Leu467pro
Hello just found out my mutations Hoping someone else has these or any information about them. exact sequence is c.1521-1523delCTT and p.Leu467Pro i was told the second one is a rare type i am 36 years old from melbourne australia lung function 85%_89% have only started to feel the impact of Cf the past few years i have had three hospital admissions since 2012 my wife and i are considering IVF so i would love to chat with anyone who has undergone IVF or may ave information on the above mutation thanks in advance Jake (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - June 16, 2015 Category: Respiratory Medicine Authors: stock12 Tags: DNA and Mutations Source Type: forums

IVS changed every 24hrs??
So my friend has cf and has been in hospital since last week. She has a port, but lately hasn't been working. They gave up on port & put in IV, but changing it every 24hrs...is that normal? I thougt IVs were good for few days. She's just miserable & wondered if this was normal to happen. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 15, 2015 Category: Respiratory Medicine Authors: Ryan_cfsupporter Tags: Families Source Type: forums