Cough question
My daughter recently had an endoscopy done. Anesthesiology told me "she had more respiratory secretions than we normally see, typically we see it if someone has a cold" According to her GI doc they "suctioned a great big blob out during extubation and said she should feel some relief now" I did ask anesthesiology if they could culture any secretions they encountered, they said that is not something they do. :( She has had this chronic, productive, daily cough since this past October. Last Friday she had tubes put in both her ears d/t failing her hearing test, large amount of fluid behind her ears and 6 ...
Source: Cystic Fibrosis Newly Diagnosed Forum - April 9, 2015 Category: Respiratory Medicine Authors: Makmomma2 Tags: Newly Diagnosed Source Type: forums

g1069r
I have spent countless hours trying to find anyone with the mutation g1069r. I'm really not expecting that anyone will respond because it just seems to be incredibly rare but figured I'd post anyways just in case. I've found some mention of the mutation in a few studies and listed on some patent requests - but I'm just curious if anyone out there has any experience with this mutation. My 9 month old has one copy of df508 and one g1069r which is currently categorized as a mutation of varying consequence in the CFTR database. He has a CRMS dx currently - but I'd love to find out more! (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - April 7, 2015 Category: Respiratory Medicine Authors: emason Tags: DNA and Mutations Source Type: forums

Children's Hospital Pittsburgh CF Clinic
Hi. Was wondeing if any of your kids go to the cf clinic at children's hosp. pgh. My sons doctor unfortunately is retiring in July, and we need to choose a new doc. withen the practice. I have 2 doctors i am considering, and 1 that is a definate no. Besides being a great doctor, we need one with a great bedside manner who is super patient. My son also has autism, and appointments can be more difficult because of it. Communication is tough between my son and doctors since he doesn't really speak to to them. His current doc is very patient and creative to get my son to cooperate. The doc definetly must be soft spoken and als...
Source: Cystic Fibrosis Families Forum - April 6, 2015 Category: Respiratory Medicine Authors: jshet Tags: Families Source Type: forums

Tricare Coverage for CF Dietician?
Hello, I would greatly appreciate if any one has any recommendations or information about Tricare coverage for specialized CF dieticians. Currently, we have several pediatric patients that are referred outside of our military clinic and receive their CF care at specialized pediatric hospitals for their routine Pulmonology visits. However, these children have been unable to receive specialized dietician consults along with their CF team visits because Tricare will not cover the services stating that the children can receive dietary consults with the dieticians on-post. However, as I am sure you all agree, CF dietician are ...
Source: Cystic Fibrosis Families Forum - April 6, 2015 Category: Respiratory Medicine Authors: rhcnurse Tags: Families Source Type: forums

Tricare CF Dietician Coverage assistance
Hello, I would greatly appreciate if any one has any recommendations or information about Tricare coverage for specialized CF dieticians. Currently, we have several pediatric patients that are referred outside of our military clinic and receive their CF care at specialized pediatric hospitals for their routine Pulmonology visits. However, these children have been unable to receive specialized dietician consults along with their CF team visits because Tricare will not cover the services stating that the children can receive dietary consults with the dieticians on-post. However, as I am sure you all agree, CF dieticians are...
Source: Cystic Fibrosis Payment Assistance Resources Forum - April 6, 2015 Category: Respiratory Medicine Authors: rhcnurse Tags: Payment Assistance Resources Source Type: forums

Travelling to NY - best care center?
Hi All, We are travelling to New York later this year and are looking for a recommended paediatric care center for our 3 year old PWCF. She's DDF508. We will be staying with my partner's parents near Binghamton. I am not a citizen, but my partner is, and we are currently looking at getting dual citizenship for our daughter to hopefully help with healthcare if need be. Additionally, any help or advice about insurance would be helpful, as I am trying to get my head around the US healthcare system (we don't need it where we are currently)! Does everyone have their kids covered under their own plan until they turn 26? Is Ob...
Source: Cystic Fibrosis Families Forum - April 4, 2015 Category: Respiratory Medicine Authors: Helenlight Tags: Families Source Type: forums

atypical form of cf diagnosis
Has anyone ever had the phrase atypical form of cystic fibrosis thrown at them? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - April 2, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

CF care in Spain
Hello, My husband and I are considering a year abroad in Spain (possible move) with our three sons. Our youngest has Cystic Fibrosis. We are in the very early stages of researching/planning, so really we are open to all information. Our biggest question is, where would we find the best care for our son's CF? This would definitely make the biggest difference in where we decide to move. We do have family in Andalucia, so southern and close to the beach are high on our wishlist....but we are open to anything at this point. If anyone has any advice, information, suggestions, it would be greatly appreciated! Thanks! M (Sou...
Source: Cystic Fibrosis Families Forum - April 1, 2015 Category: Respiratory Medicine Authors: martatv75 Tags: Families Source Type: forums

Question on residual function
Can someone tell me how to find out which mutations are considered residual function? I saw where vertex is doing a new study on one df508 and one with a residual function. My kids have a class I mutation and a df508. Thanks. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - April 1, 2015 Category: Respiratory Medicine Authors: Nikole Tags: DNA and Mutations Source Type: forums

my CF infant had a solid poop...is this normall??
My 7 month old had a solid poop today for the first time. He is breast fed amd we started to introduce solid foods recently. Has anyone else had this happen or do I need to contact the clinic for advice? First time mom and cf mom so I am cautious about everything:) -Erica (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - March 26, 2015 Category: Respiratory Medicine Authors: Erica Wesley Tarnacki Tags: Families Source Type: forums

positive sweat test but no cf ???
My daughter was diagnosed with cf for 15 years. They then found her variance to be 7542 and now no c.f.. does anyone else have this? (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - March 25, 2015 Category: Respiratory Medicine Authors: Salbal Tags: DNA and Mutations Source Type: forums

More than 2 mutations?
Hi, I am new here. Anyone else who has more than 2 mutations? Seems like our daughter has. She was recently diagnosed after sweat and genetictest. At first the doctors gave us 2 mutations but now they found a third one. Just curios if someone else has it. //drea (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - March 22, 2015 Category: Respiratory Medicine Authors: Drea75 Tags: DNA and Mutations Source Type: forums

A glimpse of my cfers
Hi all I made a short video of my kids. I am sure all you can relate. We are participating in freezing for cystic fibrosis on April 11. Check out the video https://m.youtube.com/watch?v=lKmZiFEVIsk (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - March 22, 2015 Category: Respiratory Medicine Authors: threebabies Tags: Families Source Type: forums

updat/questions
So a few months back i posted about my daughter and these sweat test. Finally got in to see the CF doctor personally. He looked at my daughters results ans told me flat out he was very baffled on every thing. He said that he has never seen someone have 2 sweat test done at different times and come back with exactly same results both times. He checked her out. Told me by looking at her that he doesn't think she has CF. But because of her sweat test and symptoms he did a lot of testing. First test he did was he swabbed her throat. He said that the culture did grow staph but that was normal in a non cf patient. Second test he...
Source: Cystic Fibrosis Newly Diagnosed Forum - March 21, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

Awesome CF Ed Day in Richmond, VA area on March 28- open to all
Are you in the Richmond VA area? Saturday, March 28 at 4 pm, Children's Hospital of Richmond is hosting a great CF Family Education event with Michael Boyle speaking (he did the NACFC keynote last fall, fabulous) and me AND my teenage son talking about parenting kids with CF. I hope to see you there! PS: It will be a dinner meeting and is free and open to all CF families and friends throughout the state whether or not they are a part of the CF Care Center at VCU. Details are below. On Saturday the 28th of March from 4 to 9 pm, the CF Care Center at VCU, the VCU CF Family Advisory Board, industry sponsors and the Virginia ...
Source: Cystic Fibrosis Newly Diagnosed Forum - March 18, 2015 Category: Respiratory Medicine Authors: LisaGreene Tags: Newly Diagnosed Source Type: forums

Awesome CF Family Ed Day planned in Richmond, VA area- open to all
Are you in the Richmond VA area? Saturday, March 28 at 4 pm, Children's Hospital of Richmond is hosting a great CF Family Education event with Michael Boyle speaking (he did the NACFC keynote last fall, fabulous) and me AND my teenage son talking about parenting kids with CF. I hope to see you there! PS: It will be a dinner meeting and is free and open to all CF families and friends throughout the state whether or not they are a part of the CF Care Center at VCU. Details are below. On Saturday the 28th of March from 4 to 9 pm, the CF Care Center at VCU, the VCU CF Family Advisory Board, industry sponsors and the Virginia ...
Source: Cystic Fibrosis Families Forum - March 18, 2015 Category: Respiratory Medicine Authors: LisaGreene Tags: Families Source Type: forums

Misdiagnosis?
So my family doctor diagnosed my mom with gastric reflux several years ago. When she was pregnant with my younger brother, she found out she had CF. Now he's telling me I have gastric reflux. He won't schedule a sweat test, maybe I'm just overreacting? Can gastric reflux be in any way related to CF? Or maybe mistaken for CF? Sorry I've just been sick for so long and I'm tired of going back and forth and getting different diagnosises, I want to know for sure what's wrong with me so that I can get treatment that will actually help. I'm just tired. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - March 18, 2015 Category: Respiratory Medicine Authors: tiffanymarie316 Tags: Newly Diagnosed Source Type: forums

Sweat test scheduled...I have so many questions
Hi there. I have four children ages 8, 6, 3.5 and 21 months. My youngest is being tested for CF. My 6 year old was tested when he was 3, and his first test was inconclusive, his second was negative. My 21 month old was sent to a pediatrician (he normally sees a NP a family practice) because of his small stature. He is still in 6/9-9/12 month clothing , weighs 20 lbs on a good day, and is 30.5 inches. He has a wonderful appetite and eats a variety of foods. His stool has always been bulky. With whole food, stringy mucus at times, and very greasy/soft/SMELLY. Since my older son (the one who was previously tested) also had/ha...
Source: Cystic Fibrosis Newly Diagnosed Forum - March 18, 2015 Category: Respiratory Medicine Authors: 1princess3princes04 Tags: Newly Diagnosed Source Type: forums

Kids with CF talking to other Kids with CF
HI... My name is Carol and I am trying to see if there is a way for my grandson to talk to other kids with CF? His name is Connor he is 6 years old and very smart :) He has had a rough year due to CF infections, pic lines and last Oct a really bad reaction to antibiotics he was taking. He was in the hospital for almost the whole month of Oct. he had a very difficult time. So now he scared, does not want to go see the doctors at all. I cannot blame him he really did have a difficult time. Also he is at the age and his development where he is asking a lot of questions about CF. He said he is the only one with CF .. no one...
Source: Cystic Fibrosis Families Forum - March 18, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums

Pulmonary Hypertension
Anyone diagnosed with pulmonary hypertension after lung transplant? I just had a routine echocardiogram and my cardiologist said I have mild pulmonary hypertension, which he does not think needs to be treated at this point. Curious to know if this is common after transplant. I understand that it is common in end stage CF, so I most probably had it at that point, but supposedly a lung transplant would fix that. Any input would be appreciated. (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - March 17, 2015 Category: Respiratory Medicine Authors: CFfisherman Tags: Transplants Source Type: forums

Is it normal to cough up mucous while casually working out and doing treatments?
Cause I've seen that a lot of CFers do that, but I don't. I don't cough up anything. why is that? My pft is 111% btw (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - March 16, 2015 Category: Respiratory Medicine Authors: Enzo2311 Tags: Exercise & Fitness Source Type: forums

Which is easier: Gaining Muscle or Losing fat?
which is easier for those who have CF? (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - March 16, 2015 Category: Respiratory Medicine Authors: Enzo2311 Tags: Exercise & Fitness Source Type: forums

Is muscle building different for me because i have cf?
So I really feel that its different for me... some how. Its harder for me to make muscular gains. I eat a ton of calories (well, I sorta THINK I do lol), I workout 4-5x a week lifting weights. i've been weighing myself every few days, and it ends up i haven't gained any weight which is a really good sign that someone is building muscle so do those with cf build muscle differently? (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - March 15, 2015 Category: Respiratory Medicine Authors: Enzo2311 Tags: Exercise & Fitness Source Type: forums

Has anyone tried Plexus for Blood Sugar control?
Hi y'all! I am 32 yo female and found out last June my A1C was elevated. Rather than jump right into insulin, I decided to do my best to control by being careful about the foods I eat. I was having some success (when I was perfect) but now I'm pregnant! With pregnancies 1 and 2 this meant sugars that went a little crazy. My friend sells Plexus products (they have a full selection of supplements, probiotics, etc) and a specific product called Plexus Slim. Anyone heard of it? Well, don't let the name fool you. It was developed for blood sugar regulation and then they discovered some people lost weight on it (because of BS re...
Source: Cystic Fibrosis Alternative Medicine Forum - March 15, 2015 Category: Respiratory Medicine Authors: jmiller1 Tags: Alternative Medicine Source Type: forums

directional stroking percusser for free
handheld percussers.jpgmechanical percusser.jpgPediatric Flimm Fighter directional stroking percusser and will also throw in a couple handheld percusser cups for chest and back patting. Just pay shipping and handling. My daughter used the percusser cups when she was a baby and the mechanical stroking percusser as a toddler, but she's had the vest for a couple years now and never uses other forms of chest therapy according to the doctor's directions. My doctor says these methods aren't as effective as the vest, but they are ideal for babies and younger children that can't fit a vest yet. They are also better for traveling s...
Source: Cystic Fibrosis Airway Clearance Techniques Forum - March 14, 2015 Category: Respiratory Medicine Authors: Melody Chaney Tags: Airway Clearance Techniques Source Type: forums

CF and natural options... ???
Hi, I am asking on behalf of my friends who have a 4yo son with CF... what are natural options in such cases? Thank you! (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - March 13, 2015 Category: Respiratory Medicine Authors: Purusha Tags: Newly Diagnosed Source Type: forums

Iui
I'd like to get some feedback from anyone that has gone through IUI with femara or injectables and had success. My husband and I have been struggling with infertility for over 3 years now. Not only is my CF an issue, but he also has mild male factor. We did 2 IUIs in 2013 that were unsuccessful and sought a 2nd opinion and at that time was told that IVF w/ICSI was the way to go. Well, turns out, unless I can find an IVF clinic that will do the retrieval in an OR, IVF will not be an option for us. Anesthesiologists from two clinics are not comfortable with placing me under the anesthesia. Now we are being told that IUI will...
Source: Cystic Fibrosis Pregnancy Forum - March 13, 2015 Category: Respiratory Medicine Authors: amber_cf85 Tags: Pregnancy Source Type: forums

Do You Need a Recreation Grant?
I have no experience with this organization but thought some might find it helpful....if you apply for a Recreation Grant, or have done so before, let us know your experience! If your application is approved, the grant is up to $500. It is based on the premise that activity is especially helpful for CFers. Oh yes. http://www.cflf.org/recreation-grants (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - March 9, 2015 Category: Respiratory Medicine Authors: Gammaw Tags: Families Source Type: forums

Fecal elastase test vs pancreatic stimulation ???
I am the mom of a 4.5 years old child in limbo who may or may not have CF. Briefly: several negative sweat tests, 2 genetic tests that both came back with a variant that's known to be related to pancreatic problems but nothing else. And 5 fecal elastase tests over the years that came back ranging from 150 to 87 (last one recently), done at least in 2 different labs, collected by either my husband or I. Had been diagnosed as PI. And one pancreatic stimulation test recently that came back all fine, the GI doctor told us: he has no pancreatic problems, give him immodium when he has diarrheas. He has had diarrheas problems...
Source: Cystic Fibrosis Families Forum - March 7, 2015 Category: Respiratory Medicine Authors: sanfloraine Tags: Families Source Type: forums

Delta 508 & C2657+2_2657+3INSA
Hi there Our gorgeous little e girl was diagnosed with CF at 3 weeks old. She is now 3 months old and doing great. We have just got the results back in relation to her gene mutation. One of then is d508 and the other is C2657+2_2657+3INSA which I have been advised is a very rare gene type. We are based in Ireland and our consultant knows very little about this particular gene combination. One thing that he has indicated is that our daughter is likely to to be pancreas sufficient and that she may have a milder form of cf. As you can appreciate we are trying to get out heads around this and believe that this is very good ne...
Source: Cystic Fibrosis DNA and Mutations Forum - March 6, 2015 Category: Respiratory Medicine Authors: G-STAR Tags: DNA and Mutations Source Type: forums

looking for people near me
Anyone live in Lafayette or near Lafayette. (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - March 6, 2015 Category: Respiratory Medicine Authors: katjdore Tags: Teenagers and Young People Source Type: forums

IVF Process
Quote: Originally Posted by slugo21 what processes did you have to go through and where did you get your ivf done at? Slugo, I hope you don't mind but I turned your private message into a post. This is so other people with similar experiences can chime in. (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - March 5, 2015 Category: Respiratory Medicine Authors: ethan508 Tags: Pregnancy Source Type: forums

Other Airway Clearance Techniques besides the Vest or actual CPT (Clapping)
Does anyone know of any other airway clearance techniques that are effective besides the huge and heavy Vest system and other than having to rely on another person to do chest physical therapy and also other than the Flutter Valve which is dependent on how the person uses it as to whether it is effective or not? I am unsure that the Vibralung is able to be cleaned properly as the instructions say to use Clorox wipes? I know bacteria have been found in baby wipes and cleaning wipes in the past so I am hesitant to look into it further. Those hospital wipes are $100 a container so I really can't afford those. I really wanted ...
Source: Cystic Fibrosis Airway Clearance Techniques Forum - March 4, 2015 Category: Respiratory Medicine Authors: believingjesus Tags: Airway Clearance Techniques Source Type: forums

updates on new exercise
So I have been reading different post about different workouts and ways to gain weight and stay healthy but there isn't anything current. I was wondering has anyone found good works and etc.. (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - March 3, 2015 Category: Respiratory Medicine Authors: slugo21 Tags: Exercise & Fitness Source Type: forums

Vest & Neb Storage
I'm looking for advice in regards to how and where families are storing their vest/neb/medical equipment when not in use. Currently, my daughter's vest is in the living room. She gets treatments twice a day regularly and sometimes 4 times when she's sick. Because of how often she uses it, it doesn't make sense for our family to put it "away" every time. Unfortunately, it gets mess-ily shoved in a corner of the living room with cords and tubes everywhere. I have been looking for a small hutch or side table with doors to store it. I was also thinking my husband could drill a hole in the back for the electrical cord...
Source: Cystic Fibrosis Families Forum - March 2, 2015 Category: Respiratory Medicine Authors: aimeeinman10 Tags: Families Source Type: forums

UF Shands for IVF
Hello!! My husband and I just received news last week that the fertility clinic we were working with cannot help us achieve pregnancy. Their anesthesiologist is not comfortable with me having the procedure in their office due to them being an outpatient clinic. They suggested I check out USF (University of South Florida) - However, because I am a patient with the CF clinic at Shands UF, I decided to give them a call to see if they would set up a consult with me. My appointment is on March 11th. Is there anyone out there in Florida who has gone through Shands UF Womens Clinic Spring Hill? I'd love some feedback as my husba...
Source: Cystic Fibrosis Pregnancy Forum - March 1, 2015 Category: Respiratory Medicine Authors: amber_cf85 Tags: Pregnancy Source Type: forums

Cystic Fibrosis University project
Hi everyone! I'm from England and I'm 20. I lost my friend, Helen, to CF 2 years ago when she was 18 and another friend has recently had a lung transplant. I do some work for The Cystic Fibrosis Trust as a communications volunteer and I am doing my final year university project on The CF Trust charity. I am near to completing my degree in Public Relations and I am in the middle of the research stage of my year long project on Cystic Fibrosis. If anybody has a spare 5 minutes, please would you fill out my short survey regarding Cystic Fibrosis and the Cystic Fibrosis Trust. Thanks for your time!! Any responses are great...
Source: Cystic Fibrosis Community Initiatives Forum - February 28, 2015 Category: Respiratory Medicine Authors: olivia_chan12 Tags: Community Initiatives Source Type: forums

traveling + eating post transplant?
Hi all, I am trying to spend my time pre-tx letting myself think about all that I would like to do post-transplant. And one of those things is travel. I'd love to hear stories about how you all have dealt with food safety while traveling, particularly in europe or out of the states anywhere. I am totally aware of all the guidelines after transplant, so mostly im just looking for first hand accounts of how you actually make it work. For instance if you're in another country at a restaurant where you don't speak the language, or speak very little, do you play it safe and order little to nothing, unless you are positive it...
Source: Cystic Fibrosis Transplants Forum - February 27, 2015 Category: Respiratory Medicine Authors: kittencaitlin Tags: Transplants Source Type: forums

Respirtech InCourage Vest and Machine For Sale
Respirtech InCourage Vest System for sale. Works Great! Has Less than 45 hours on it. Comes with tubes, cord, travel bag, black vest-size 38. $1,200 (that's an amazing deal) and that includes shipping in the USA. Payment made through Pay Pal. Please email any questions or inquiries to: joeapril04@gmail.com. Thanks Much Attached Images IMG_0579.jpg (93.4 KB) (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - February 24, 2015 Category: Respiratory Medicine Authors: Aj marz Tags: Airway Clearance Techniques Source Type: forums

Should it be considered?
I know that we are supposed to trust our doctors. They've gone to college for many years and they know a lot. I'm currently 15, a female, and I've had many problems with my doctor. He diagnosed me with asthma about a year and a half ago, and for the most part, I accepted that. But my mom was diagnosed with CF when she was pregnant with my little brother. He was tested, but I never was. My mom brought that up to him when the asthma meds weren't having the desired effects, but he simply told her the tests she had must have been wrong and that she didn't have CF. I unno he's a doctor, and maybe he's right, but I am just so ti...
Source: Cystic Fibrosis Newly Diagnosed Forum - February 21, 2015 Category: Respiratory Medicine Authors: tiffanymarie316 Tags: Newly Diagnosed Source Type: forums

CRMS baby and sweat test results
Hi everyone! Baby is now at 5.5 months, and we just completed her 2nd sweat test Monday. The results came back at 22 and 20--it went down from the 33 and 30 when she was 25 days old. So I think it's safe to say, she falls into that category that is defined at CF being very unlikely. I'm thinking our situation disproves the thought that 2 mutations equals CF. Any thoughts on this? I'd like to think that this is the end of it all, and the book is closed on the guessing game of whether or not she will have CF, but I don't think it's that simple. I think we still wait, we still watch, and if anything presents, it presents ...
Source: Cystic Fibrosis Newly Diagnosed Forum - February 20, 2015 Category: Respiratory Medicine Authors: Mama2Five Tags: Newly Diagnosed Source Type: forums

26, just diagnosed, advice/input/kind words welcome.
Hey guys, whats up? Here's my story.... For the past 6 months I've been having bad stomach problems, hard time keeping food or liquids down, throwing up after meals because I was too full, etc. I ended up losing around 40 lbs and just feeling not myself. I went to numerous doctors, got cat scans, and enoscopy, etc over the summer and basically they just gave me ppi meds for acid reflux and shrugged their shoulders. After months of the same story, I went to Robert Wood Johnson Hospital in New Brunswick. NJ and was emitted. I was there for about ten days, mostly running the same tests, but the doctors actually believed me ...
Source: Cystic Fibrosis Newly Diagnosed Forum - February 16, 2015 Category: Respiratory Medicine Authors: Mike Brown Tags: Newly Diagnosed Source Type: forums

Anyone approved for Kalydeco for a 5T variant
I have a stop codon on one gene and a 5T variant on the other gene. The second gene has polymorphisms but no known disease causing mutation. My doctor is working on the insurance approval now. I have had a 6 month lung function decline, diagnosed with CFRD last week, and culture PA. Any tips or research I can give my doctor to help my cause please share. Anyone on Kalydeco with 5T variant as the only thing decreasing CFTR on that gene? (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - February 16, 2015 Category: Respiratory Medicine Authors: Beccamom Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Even More Promising News!
Even more promising news from CF Roundtable: http://www.cfroundtable.com/2015/02/...s-medications/ (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - February 13, 2015 Category: Respiratory Medicine Authors: stephen Tags: DNA and Mutations Source Type: forums

ANTIBIOTICS: How much is too much?
My 10-year old and my 4-year old both do great when they are on antibiotics such as Bactrim or Zyvox. Their coughs almost disappear. However, 24 to 48 hours after they get off the antibiotics, their coughs return. They both only culture MRSA. What I want to know is what issues are caused by just putting them on these antibiotics every couple of weeks and are these issues bigger than not putting them on these antibiotics every two weeks. Thoughts? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - February 13, 2015 Category: Respiratory Medicine Authors: Ryan Tags: Families Source Type: forums

update
Baby girl had her sweat test done today and came back once again borderline. Waiting on her blood work to come back. It's been almost a week now. Hopefully it will be back soon. Not sure where we go from here. We are in the process to getting a new pulmonary dr. Can anyone tell me....on an order form/script to have blood drawn for CF, her dr ordered a 32 analytical.... does anyone know what that means (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - February 12, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

Delta F508 & R117H 5T
............ (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - February 11, 2015 Category: Respiratory Medicine Authors: Allison Staley Tags: Newly Diagnosed Source Type: forums

HILL-ROM The Vest 105 System
I have a Vest 105 for sale. Comes with accessories (vest, hoses, etc) and travel bag. Less than 6 hours of use. I'm asking $2000. I can email you pictures. Thanks. (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - February 10, 2015 Category: Respiratory Medicine Authors: Mr. John C Tags: Airway Clearance Techniques Source Type: forums

Motivational CF Workout Video
My wife and I came across this song and made it her motivational workout song to keep going with her treatments and exercise when its hard. We put together this CF awareness music video showing treatments and PT workouts while she was in the hospital. We posted it on youtube a few days ago and have had an overwhelming support of over 45,000 views. We thought it might be an encouragement to some of you to keep on fighting! Check it out here: http://youtu.be/FJw4NytwRNw (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - February 10, 2015 Category: Respiratory Medicine Authors: thefreylife Tags: Exercise & Fitness Source Type: forums

More Promising News
From CF Roundtable: Trials for CF Patients Homozygous DeltaF508 Now Enrolling! http://www.cfroundtable.com/2015/02/...armaceuticals/ (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - February 9, 2015 Category: Respiratory Medicine Authors: stephen Tags: DNA and Mutations Source Type: forums