Here we go--baby cultured pseudomonas
So I received a phone call this morning that our 8 week old cultured pseudomonas (she also pointed out there there was a study awhile back that followed non cf newborns up to 1 years old and some showed pseudomonas as well, so it's possible). From what I understand, this is common in CF. Can anyone elaborate why? Is this type of bacteria also common in non cf folks like me, or my husband and other kids? She gave us two options-we can culture again, or we can go ahead and start tobi now-which we'd do for 28 days, culture again and continue another 28 day treatment if it was still present. On cff.org, it says that they do ...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 27, 2014 Category: Respiratory Medicine Authors: Mama2Five Tags: Newly Diagnosed Source Type: forums

just a question
my 15 daughter developed a nasal obstruction, had septoplasty and the doctor reported that my daughter had the worst adhesions he had ever seen. Within 2 months the adhesions were back, she developed a saddle nose, and she was snoring again. The lining of her nose is lined with sores and bleeds everyday, and she coughs all of the time. My daughter was sent to a Rhinologist who took one look at the lining, said it was allergies and she needed reconstruction. We were sent down the hall to plastics where the doctor took one look at her nose and said that he felt like she had a vasculitis called Wegeners Granulomatosis. She we...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 26, 2014 Category: Respiratory Medicine Authors: jennn1971 Tags: Newly Diagnosed Source Type: forums

Scar tissue
I've been in the hospital for a PICC line 6 times with the lines all in my upper arms. I was wondering if they would start placing the lines elsewhere eventually when to much scar tissue builds up. Can anyone help me? Thanks! latebloomer (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - October 25, 2014 Category: Respiratory Medicine Authors: latebloomer Tags: Teenagers and Young People Source Type: forums

Any info/experience with transplant at CHOP
I am looking for any information, experiences, or wisdom in regards to lung transplant at CHOP (Philadelphia). Thanks!! (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - October 22, 2014 Category: Respiratory Medicine Authors: Beaz Tags: Transplants Source Type: forums

SmartVest vest for free - Unused - Child Large
I have a child's large vest if you want it. Never been used, it's still in the package. Just send me a message and I'll ship it out to you. Attached Images WP_20141018_10_20_40_Pro.jpg (93.2 KB) (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - October 21, 2014 Category: Respiratory Medicine Authors: Jason Scala Tags: Airway Clearance Techniques Source Type: forums

Need someone who did full-genetic sequencing in 2005 or earlier
Hi! I am actually posting this to help someone else. He is trying to sue whomever for medical negligence and asked me to ask the group if someone did a full genetic sequencing in 2005 or before. He just needs the results with the date - the name can be blackened out/erased. This can be done totally anonymously. He needs to show that the exam was available then. He can be reached at ori_i @ walla.co.il Thanks! (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - October 19, 2014 Category: Respiratory Medicine Authors: JustaCFmom Tags: DNA and Mutations Source Type: forums

Resource web page for young children with CF
I have a two year old boy with cystic fibrosis and since learning of his diagnosis my husband says I've literally read the Internet on everything relating to the treatment of CF. I've been carefully saving the information I've gathered and I have now begun compiling it into a family friendly website that gives access to information and supplements that we as a family have tried and have had success with in keeping our little boy healthy. The website is still in its infancy but it contains a great deal of valuable information and is updated on a daily basis. And take a peek at the video and song we put together to raise ...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 19, 2014 Category: Respiratory Medicine Authors: littlemyth Tags: Newly Diagnosed Source Type: forums

Broncoscopy
My DS is getting fever frequently offlate and Sputum culture says there no growth what soever. His ped pulmonologist is suggesting a broncoscopy. Somehow we are not comfortable with the idea. We have never used pulmozyme before but want to use it before going for broncoscopy. I understand it helps bring out the sputum deep inside. Can someone please tell me if Broncoscopy is conducted on kids young as 3.5 yrs. Is it safe. What are there any guide lines for it in your respective countries. Please help. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 14, 2014 Category: Respiratory Medicine Authors: Mallika Tags: Newly Diagnosed Source Type: forums

The Lego Walk for Cystic Fibrosis
We want this video to go viral to help raise funds and awareness for CF. My family and I put this together with the idea of the Lego Walk as sort of a new ice bucket challenge but for cystic fibrosis. It turned into something more meaningful and heartfelt. Please watch and SHARE!! Together we can find a cure! https://www.youtube.com/watch?v=gGgAA1Rk83Y (Source: Cystic Fibrosis Community Initiatives Forum)
Source: Cystic Fibrosis Community Initiatives Forum - October 14, 2014 Category: Respiratory Medicine Authors: littlemyth Tags: Community Initiatives Source Type: forums

momma's intuition
hi all! i'm sure you have a lot of concerned momma's on here asking questions about their babies symptoms. sorry to be another one, but i need some feedback... my son is 20 months old and has had recurrent bouts of wheezing and coughing since the age of 5 months. we have had 2 ER visits and 1 hospital stay (for the flu) last february. at that time a chest x-ray was performed which was read as "bronchiectasis". a follow up scan over a month later once he had recovered from the flu was unchanged. i am a physician assistant and know that bronchiectasis is not a normal or incidental finding. based off of my own res...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 14, 2014 Category: Respiratory Medicine Authors: kyelizabeth Tags: Newly Diagnosed Source Type: forums

Fundraiser
Hi I am a Independent Younique Presenter .A co worker of mine currently lost her brother to CF. I have decided to support her and the Cystic Fibrosis Foundation. I have set a CF fundraiser. I ask you to share with your friends and family! The following will be donated to the CFF $5 from each 3D Fiber Lash set sold 15% of all other sales You can make purchases at https://www.youniqueproducts.com/rox...ty/706065/view You can also follow me on Facebook www.facebook.com/youniquebyroxanne I'm not 100% knowledgeable about CF, but I'm learning. I hope they find a cure soon, I can't imagine those who live with CF must en...
Source: Cystic Fibrosis Community Initiatives Forum - October 14, 2014 Category: Respiratory Medicine Authors: Roxanne Dercola Tags: Community Initiatives Source Type: forums

Newborn Screening- NERVOUS WRECK PLEASE HELP!
Hello, I am new to this community and new to a health issue of this caliber. I guess my question for people out there is. I got a call from my doctor telling me that there is a more than likely chance my child has CF. I have two other sons who have not tested positive or even come up as a concern for CF. I have to wait for a swear test to tell if it is a yes or a no. They center is supposed to sit down with me and my husband and I have been worrying myself sick because I feel just so lost and stressed out over this whole ordeal. I just can't really get information that is completely accurate. Has anyone else been through t...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 13, 2014 Category: Respiratory Medicine Authors: Worriedmotherof3 Tags: Newly Diagnosed Source Type: forums

CF testing, at 23?
Hey, I don't know where to start with this one - first off, i'm 23. I have a lot of health problems, and also have a lot of friends with CF because of being in hospitals a lot. I've always been told I have very brittle and unstable asthma, and that because of my asthma I get lots of infections. However its got to the point where I am in hospital every few months, my lung function is rapidly dropping and we cant seam to get the infections under control. So I was referred too another hospital (Papworth) which specializes in CF/ Non-CF bronchiectasis and recurrent difficult infections. They have ran lots of tests, one of wh...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 13, 2014 Category: Respiratory Medicine Authors: Dancingintherain Tags: Newly Diagnosed Source Type: forums

Cub Scouting Precautions?
My 9 year old has joined the cub scouts. He has wanted to for three years and he is thrilled to be there. But after only a couple of months, they are planning a 5km hike and an overnight camping trip. My initial reaction was no, no. No hiking. But I know it will be good for him . . . .if we can get them to carry enough Gatorade to keep him hydrated. He dehydrates SO fast, he's beenin trouble a couple of times despite our efforts to keep him well hydrated. But even if I can get myself past that, the overnight camping trip has me confounded. I see aspergillis in the leaves, b cepacia in the dirt, pseudo in the river, streams...
Source: Cystic Fibrosis Exercise and Fitness Forum - October 10, 2014 Category: Respiratory Medicine Authors: Gammaw Tags: Exercise & Fitness Source Type: forums

If I were to go to a doctor and go through the process of attaining a Medical Card...
If I were to go to a doctor and go through the process of attaining a Medical MARIJUANA Card, is it a pretty big guarantee that I would get verified by the doctor and approved by the state off of Cystic Fibrosis being my only Medical Issue? (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - October 9, 2014 Category: Respiratory Medicine Authors: jrocco Tags: Teenagers and Young People Source Type: forums

Pro's & Con's of Medical Marijuana
What are the pro's and con's of using Medical Marijuana VIA vaporizer and eating (NOT Smoking, or causing combustion of the plant) ??? Have you ever considered applying for the Medical Marijuana Program of your state? Did you? Why or why not? (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - October 9, 2014 Category: Respiratory Medicine Authors: jrocco Tags: Exercise & Fitness Source Type: forums

Do YOU feel guilty for being sick?
Just wondering if any one of YOU people (me included) feel guilty for being sick all the time? Like everyone else is supposed 'automatically' be understanding and bend over backwards to accomodate YOU. How many other people's lives have to revolve around US? OUR appts? OUR hospitalizations? OUR dreams/goals? OUR personal wants? OUR desires to be 'normal' when it inconveniences everyone else around us? Do we realize how much we are truly burdening others around us with our complicated lives? Anyone feel the same? (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - October 9, 2014 Category: Respiratory Medicine Authors: musclemania70 Tags: Transplants Source Type: forums

Medical Marijuana as an Addition to Modern Medicine
After some research, I believe that Medical Marijuana's benefits far out way the risks. There are multiple alternatives to the typical instruments used to smoke marijuana, such as Vaporizing. Vaporizing uses convection heating to heat the air in a device to such a high temperature that it 'vaporizes' the marijuana plant, therefore, releasing its cannabinoids including THC (the psychoactive chemical of the plant), CBD & CBN (non-psychoactive chemicals of the plant), into a plastic type balloon or a medical grade plastic 'whip'. Because of the state's decision to legalize of Medical Marijuana, it can be monitored as w...
Source: Cystic Fibrosis Alternative Medicine Forum - October 5, 2014 Category: Respiratory Medicine Authors: jrocco Tags: Alternative Medicine Source Type: forums

thinner air in the winter
would anyone happen to know if the air is thinner in the fall/winter compared to the summer? When I have been running this past week I have felt like my lungs and legs could not get oxygen they needed. And I had been running all summer and there were no problems. Any ideas would be great. Thanks in advance. (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - October 5, 2014 Category: Respiratory Medicine Authors: tylerp Tags: Exercise & Fitness Source Type: forums

Event Celebrates 25 Years of Genetic Advances in CF that Improved CF Care
Johns Hopkins University School of Medicine (JHUSOM), will be hosting a live satellite symposium celebrating the quarter century of progress that has occurred since mutations in the CFTR gene were first linked to cystic fibrosis (CF). Ahead of the Curve (AOTC): CFTR at 25 — Clinician and Patient Perspectives will take place at the 28th annual North American Cystic Fibrosis Conference (NACFC) in Atlanta on October 10, 2014. Source: http://dkbmed.com/AOTC_10-2-2014.html (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - October 3, 2014 Category: Respiratory Medicine Authors: jastherob Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

1 copy F508del mutation
So my daughter who has had some symptoms suggestive of Cf but passed the sweat test has had genetic testing done. They tested for 97 mutations and they detected 1 copy of F508del. Should I push for further genetic testing? The message the pediatrician left me made it sound as if they would not pursue it any further. Suggestions appreciated. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - October 1, 2014 Category: Respiratory Medicine Authors: Makmomma2 Tags: DNA and Mutations Source Type: forums

Work out regime
Hey everyone, I am brand new to this forum! I just got released from hospital after having a course of IV antibiotics. I have fallen off the band wagon for working out numerous times, however I know how important it is.. I am wondering what is a good work out routine that you found useful? I sometimes cough up blood, but I've been told this is sometimes typical. I look forward to all your help and cant wait to read more on the forums. (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - October 1, 2014 Category: Respiratory Medicine Authors: helmut28 Tags: Exercise & Fitness Source Type: forums

Using engineered probiotic bacteria for treating Pseudomonas-induced lung infection
Hi everyone, I am a member of a research group that engineered a commensal probiotic bacteria from the human gut to seek and kill Pseudomonas aeruginosa. This work is currently undergoing pre-clinical trial and we hope to reach clinical trial stage in a few years to treat Pseudomonas infections, which potentially include lung infections induced by Pseudomonas. In anticipation of the difficulties we may encounter in researching and promoting this treatment, we are conducting this short survey to understand the perspectives of healthcare specialists, patients and the public on this form of treatment. We hope that you could...
Source: Cystic Fibrosis Alternative Medicine Forum - September 30, 2014 Category: Respiratory Medicine Authors: jlfoo Tags: Alternative Medicine Source Type: forums

F508 and I148T/possible CF symptoms?
Hi, I'm new to this forum. Does anyone have this combination? My DS (8) has these 2 mutations, which we knew about since birth when he tested positive in his newborn screening but negative in his sweat test (I carry the F508 and my husband carries I148T). We were told that he may develop atypical CF and be infertile but he has never had a follow-up appointment as the reports were buried in his pediatrician's file. Fast forward 8 years...our DS has been to many specialists (neurologists, allergists, endocronologist, psychiatrists) for issues ranging from eyes rolling in the back of his head to anger management & anxiet...
Source: Cystic Fibrosis DNA and Mutations Forum - September 29, 2014 Category: Respiratory Medicine Authors: p.tsetsilas Tags: DNA and Mutations Source Type: forums

When (If) did your CRMS turn into CF?
I've been wondering this since my daughter was diagnosed with CRMS and after reading hundreds of posts I'm just going to ask: If your child (or you) was diagnosed with CRMS when did symptoms start to appear if they appeared at all? Now, I know this varies by mutations and by child and just because your child saw symptoms at 2 years old doesn't mean that my daughter will. I guess I just believe knowledge is power and this is something I would like to know :o) Thanks! (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - September 29, 2014 Category: Respiratory Medicine Authors: lauryn.tubes Tags: Newly Diagnosed Source Type: forums

Kalydeco With "Other" Mutations
I would strongly urge anyone with the D1152H (Class 4) mutation to try to get Kalydeco! It has done wonders for my pulmonary problems thank G-d. (I’ve never had any digestive issues.) This is my seventh month on Kalydeco. To my initial astonishment, I noticed dramatic changes less than a day after starting it. Within a week my coughing stopped and the mucus disappeared. Because of my mutations, it took several weeks for me to become convinced that the improvements were really due to the Kalydeco. Kalydeco can definitely work for people with Class 4 and 3 mutations that are not on the “list”. (Source: Cystic Fib...
Source: Cystic Fibrosis DNA and Mutations Forum - September 29, 2014 Category: Respiratory Medicine Authors: stephen Tags: DNA and Mutations Source Type: forums

cystic fibrosis and criopreservation umbilical cord blood and tissue
We have a daughter of 10 months with cystic fibrosis (mutations F508del and N1303K). She was diagnosed at 5 months after 4 admissions. We saved (criopreservation) the stem cells of tissue and blood of umbilical cord of our daughter, and we still saved the umbilical cord blood of our son, older (does not carry the defective gene, he is healthy). Anyone know or can clarify me the following issues: 1. We can use the steam cells of tissue or cord blood of our daughter with healing perspectives? 2. And the brother’s umbilical cord blood? 3. Me and my husband we are 'A Rh positive' as my son, but my daughter is 'A Rh nega...
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - September 29, 2014 Category: Respiratory Medicine Authors: taafom Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

4 week old has CRMS for right now
Here is what I know so far--we went to Children's hospital Monday to get the sweat test and consult. The sweat test results were indeterminate--one was 33 and the other was 30. For infants, anything 29 or less is considered negative. 30-59 is indeterminate meaning CF is possible, and 60+ is considered positive. So I'm not sure if there's any weight in the results being on the lower end of intermediate or if intermediate means intermediate whether 30 or 55. Nothing is known about her second mutation, I1366T. So they said we're in a gray area based on the mutations--it's not a yes but it's not a no. Based on the sweat test...
Source: Cystic Fibrosis Newly Diagnosed Forum - September 26, 2014 Category: Respiratory Medicine Authors: Mama2Five Tags: Newly Diagnosed Source Type: forums

ears ringing
Does anyone else experience ringing in their ears from coughing and using the vest? (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - September 25, 2014 Category: Respiratory Medicine Authors: Georgiagirl Tags: Airway Clearance Techniques Source Type: forums

F508 and M265R
Looking for any others with M265R gene mutation it is not in the database. I am 33 and just diagnosed this year as atypical CF I have had a lot of problems with my pancreas. I don't have a clue what may develop later in life I do have extra mucus and some problems with sinuses and bronchitis in my life. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - September 22, 2014 Category: Respiratory Medicine Authors: mommof2b1 Tags: DNA and Mutations Source Type: forums

Pregancy and Serious GI Issuses
I am the mom of a very beautiful 26 year old with CF. All of her life she has had really good lung function so that is not an issue however in the past 7 or 8 years she has experienced severe GI issues. I know that she wants to have a baby at some point so my question for any of you out there who may have some of these same issues is were you able to get pregnant and how did the pregnancy go - was there any severe issues while pregnant??? (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - September 19, 2014 Category: Respiratory Medicine Authors: TerriC Tags: Pregnancy Source Type: forums

Mevion Higher speed pencil beam scanning - Hyperscan proton therapy system
One of the radiation therapy company from US named Mevion Medical systems introduced a Hyperscan system which is going to deliver high speed pencil beam scanning.Current pencil beam systems are very sensitive to motion.This latest Hypersacn system delivers less sensitive to patient and tumour motions.As of now it is not approved by US FDA (Food and Drug Administration). Details: (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - September 18, 2014 Category: Respiratory Medicine Authors: emilymainzer Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Newborn has 2 mutations-I1366T & DelF508..HELP?
So I received a call that my newborn has two mutations today-I1366T & DelF508. Her IRT was 97.99, and newborn cutoff is 67. I was told that they would refer her for the sweat test at Children's Hospital and I'll be hearing from her Dr and C.H. soon. *crickets* Soooo....in the MEANTIME, what am I supposed to think? Of course, I googled it and the information I got was "if baby tests positive for 2 mutations, baby most likely has C.F.". We have 5 children--#3 is a carrier of DelF508. Not sure about 1, 2 and 4. I never got any information after #4's birth so I assume she is not a carrier... Is it possible ...
Source: Cystic Fibrosis DNA and Mutations Forum - September 17, 2014 Category: Respiratory Medicine Authors: Mama2Five Tags: DNA and Mutations Source Type: forums

Pseudomonas Fluorescens?
My 12 month old son just tested positive for Pseudomonas Fluorescens and I'm just very confused with what it means exactly. His doctor explained to me that he would start on Tobi and that it's not to be taken lightly. I am so scared and confused and was just hoping to hear from someone that can tell me about it and what it means for my son.. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - September 16, 2014 Category: Respiratory Medicine Authors: ChristyLee619 Tags: Newly Diagnosed Source Type: forums

Residency after 38
by andreas1978 (Posted Mon Sep 15, 2014 3:29 am)Hello,My name is Andreas, I am 36 y.o. and I am from Greece. I am a fellow in respiratory medicine, in a hospital in Athens, and I have one more year to complete the fellowship.At the same time I am preparing for USMLE step 1, which I'm going to give in a few months.My question is the following:How difficult is going to be for a person like me, approximately in the age of 38, to find a residency at any hospital in the US (asuming that my step 1 score will be somewhere in the middle - not too high, not too low)?Thank you in advance for your help. (Source: Med Student Guide)
Source: Med Student Guide - September 15, 2014 Category: Universities & Medical Training Source Type: forums

C.777delT & DF508
I think my son is the only one with this combination. Anyone else have c.777delT? He was diagnosed at birth with MI & sweat test of 112. He's 14 yrs old, no hospitalizations or major lung complications so far. Main issues are with digestion (since birth) & nasal polyps (onset age 12). The results of this second mutation read - c.777delT (frameshift): Not a previously reported CFTR to our knowledge but predicted to be deleterious. I'm assuming that means Class 2 but with the mildness of his disease so far it leads me to believe it's not? thoughts? (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - September 14, 2014 Category: Respiratory Medicine Authors: aprung Tags: DNA and Mutations Source Type: forums

Non traditional looking for advice.
by Jbeans0916 (Posted Fri Sep 05, 2014 10:08 pm)I have multiple questions and I apologize if this is not the normal format used in this forum.I'm about to turn 35, received my batchelors in Biology with a GPA of 3.2 back in 2005 graduated cum Laude. I have loads of experience in terms of shadowing and Related work experiences ... Such as working in an OR for 4 years while going to school as an anesthesia tech, working in the respiratory industry, medical sales, even running a medical business and then next thing you know its ten years later and I'm in sales and I hate it. I've always wanted to be a physician like my brothe...
Source: Med Student Guide - September 6, 2014 Category: Universities & Medical Training Source Type: forums

Medical firm BioPhotas introduced LED therapy device Celluma ELITE
Medical device firm BioPhotas announced the launch of the Celluma ELITE for sale to the aesthetic physician market.The LED therapy device is stand-mounted and able to be precisely positioned over an area of treatment via an articulating arm and a patented shape-taking light panel.The Celluma ELITE is distinct from other light therapy devices. Source: (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - September 4, 2014 Category: Respiratory Medicine Authors: emilymainzer Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Post Lung Transplant Pets - Are Cats Okay?
Does anyone here, who's post-transplant, have a cat as a pet? I've heard cats are okay as long as someone else cleans out the litter box, but I'd like to hear from somebody with real world experience. My six year-old desperately wants a kitty, and I'd love to get her one. I just want to know if it's safe for me first. Bill B 40 yrs old / 16 yrs Post Transplant Los Angeles, CA. (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - September 4, 2014 Category: Respiratory Medicine Authors: Bill B Tags: Transplants Source Type: forums

Words of hope? Please
First let me say I know I am incredibly lucky. I am the proud mother of two healthy boys (3yrs and 17 months). My husband and I are, obviously at least carriers or I wouldn't even be seeking advice here. I found out I was a carrier for CF when I was 10 weeks pregnant with my first son in 2010 I tested positive for delta F508. My husband was subsequently tested and he's also a carrier for a different (and much less common) mutation though I don't remember which. We didn't do any prenatal (amnio,cvs) with our first baby. My pregnancy was difficult and scary as at 29 weeks I had a partial placental abruption and was on bed re...
Source: Cystic Fibrosis Pregnancy Forum - September 3, 2014 Category: Respiratory Medicine Authors: lexi0408 Tags: Pregnancy Source Type: forums

Transplant and pregnancies
Hello I have a few questions they are starting the work up for a transplant....I am still pretty healthy but I am not bounceing back to my normal after I get sick or get a tune up...I am 31 and have 1 daughter but we would like to have another...does anybody know good information as far as if I can have a baby now will that pro long the transplant process or will they completely look over me or what and has anybody heard of woman with cf having babies after the transplant? (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - August 30, 2014 Category: Respiratory Medicine Authors: missmary083 Tags: Transplants Source Type: forums

Powerlifting
It's better than bodybuilding. I'm doing starting strength. I've gained 15 lbs in 3 months. I've had a history of fitness my whole life. I'm now 6', 160 lbs. ALl indications is that this progress will continue. And my lung function has stabalized for the last year as well. Seriously. Powerlifting. Do it. (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - August 30, 2014 Category: Respiratory Medicine Authors: LKBamberg Tags: Exercise & Fitness Source Type: forums

HELP! Does Medicare and Medicaid cover ALL cost including all after care drugs??
If you've had a transplant or have looked into it, are there any out of pocket costs?? (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - August 27, 2014 Category: Respiratory Medicine Authors: Chantal Tags: Transplants Source Type: forums

Hill rom model 105 the Vest for sale
I have the Vest by Hill Rom complete in box for sale. It's all here including instructional booklet and DVD. Clean condition and travel bag was never used. 300 hours of usage. Very nice unit, and I have numerous pictures available upon request. Asking $2000 obo, I use PayPal for buyer protection it's model 105.email blt138@yahoo.com or text 618-214-3395. (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - August 25, 2014 Category: Respiratory Medicine Authors: billt138 Tags: Airway Clearance Techniques Source Type: forums

If you're American and have had a transplant, please help with info!
Hi all from Canada :) my sister passed from CF when she was 21 and I was 17 in 1990. I'm now writing a book, a novel where the lead is helping her sister obtain a lung transplant. It takes place is the US, and I have a few questions. Are all costs related to double lung transplants covered under basic medical insurance? If not, approximately what amount would need to be raised by the patient? The people in the story are not wealthy, so only basic health insurance is affordable...Please correct me if I'm wrong, but that would be be Medicare? What hospital or hospitals are recognized as the best covered facilities for lu...
Source: Cystic Fibrosis Transplants Forum - August 22, 2014 Category: Respiratory Medicine Authors: Chantal Tags: Transplants Source Type: forums

Still looking for others with 124del23bp
Anybody else out there? Seems to be an Azorian mutation from my husband's side...also goes by the nomenclature c.-9_14del23 (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - August 18, 2014 Category: Respiratory Medicine Authors: ccsalema Tags: DNA and Mutations Source Type: forums

blood in sputum after exersize
I felt great at the gym. I had a lung bleed about a week or so ago I just previously posted in the bulletin. I went back to the gym this am. Did my nornal routine and I came home felt great energized coughed up somen mucous and of coarse some blood was in it. Not like last week!! But now im wondering is it working out thats causing it? It is neccissarly a bad thing? Im on antibiotics and do my treatments 3x a day if not more. I feel healthier than last week what the hecccck April 23 CF (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - August 17, 2014 Category: Respiratory Medicine Authors: AprilCF2009 Tags: Exercise & Fitness Source Type: forums

boiling nebs and water?
We had a water issue in toledo ohio about microcystin bacteria in the water so we are not able to use our tap water. So I boiled my nebs with gallon water I got at the store and my nebs have a white powder substance all over them. How do you boil your nebs? What should I do now? (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - August 15, 2014 Category: Respiratory Medicine Authors: AprilCF2009 Tags: Airway Clearance Techniques Source Type: forums

coughing up blood at gym
So last thursday I was working out at my gym. I usually do 2x a day. Cardio and weight training. I fell in love with it. I was doing leg lifts and I noticed a wheeze that was really watery. I knew what was coming because it happened 4 years ago. Blood! I coughed it out and it was all over my hand. (I hope nobody saw) but I nonchalantly walked to bathroom trying not to panic. It went on for about 5 minutes and I left, I continued to go to the e.r to just get checked out. Everything was fine. Doctor started an extension on bactrim (which I was already taking), then 60mg prednisone, azithomyocin, vit k, etc haven't coughed up...
Source: Cystic Fibrosis Exercise and Fitness Forum - August 13, 2014 Category: Respiratory Medicine Authors: AprilCF2009 Tags: Exercise & Fitness Source Type: forums

Florida institute to provide funds for Powers Medical Devices
One of the famous institute Florida providing funds between $50,000 - $300,000 in seed funding to qualified companies.Funding may be provided either as debt or equity.They are going to get some powerful devices where they are facing issues with babies who are born prematurely.FDA cleared and encouraging the process. Source: (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - August 13, 2014 Category: Respiratory Medicine Authors: emilymainzer Tags: Pregnancy Source Type: forums