Surfing-inspired nebuliser developed to treat cystic fibrosis
Benefits of saltwater treatment for CF. Here are full details: http://anesthesiarespiratorydevices....ibrosis-240513 (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - November 11, 2013 Category: Respiratory Medicine Authors: emilymainzer Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Why is it relatively easier for me to gain weight vs other CFers?
So I saw a post that said someone was surprised they gained 15 lb. in like 5 years or something and weighing the most they have in their life (which was a moderately low weight). For me, it's not that hard to gain weight, it's harder to gain weight for me than normal people, but it seems easier to gain weight than other CFers. Why is this? I'm 18 and I'm 5 foot 9 inches and I weigh 167 lb. I just gained 10 lb. in like 5-6 months. (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - November 9, 2013 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

Will Obamacare affect CFers and their medicine negatively?
My mom is a support staff for a school district in Nevada, and she's scared that Obamacare will make it hard for me to get my medicine. Now I'm beginning to worry. My parents make barely anything, so in kinda scared. Idk what I'll do without my meds (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - November 9, 2013 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

Australian Kalydeco Campaign - New Facebook Page
Kalydeco is still not available to the 200 Australians with G551D. The reimbursement has been delayed as meetings and negotiations continue between Vertex and the Australian PBAC committee. We have a campaign through facebook and twitter, with the new YesToKalydeco page https://www.facebook.com/Yestokalydeco and our twitter account https://twitter.com/KalydecoAus. We would really appreciate if you could like/share our facebook page and follow on twitter. It looks likely that August 2014 is about the minimum timeframe for availability, so we need as many supporters as possible to try to accelerate this timeframe! Thank...
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - November 8, 2013 Category: Respiratory Medicine Authors: GenH Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Bacterial infection question
This is my first post.... My daughter is 11 and has CF...... she has been so healthy for the past 8yrs. Then about 2 or so yrs. ago she has had a slow decline in her numbers (still in a very great range) in June we went in for routine check and her numbers had dropped like 20%..... she was admitted and her sputum grew a bacteria call (Mycobacteria Abscesses). This bacteria is found in soil, water, and dust. This bacteria is so hard to get rid of she has been put on an antibiotic treatment for a year or longer until it clears.... She had to start with 2 months of two IV and oral meds then she is on 1 inhaled antibiotic and ...
Source: Cystic Fibrosis Teenagers and Young People Forum - November 8, 2013 Category: Respiratory Medicine Authors: MomtoprincesswithCF Tags: Teenagers and Young People Source Type: forums

CF happens and life happens, you are not alone
I am 33 and have been working on writing my life story (so far) for 5+ years. I have finally published it in blog form and would like to share it with you all. Please go to www.cfhappens.com to read it. It tells of my life struggles like getting married young, infidelity, getting divorced, dating, getting married again, family issues, etc. All the struggles that "normal" life gives on top of CF. I wanted to share my story so that others can know they are not alone in this fight. Feel free to share it with others. Thanks! Shannon (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - November 7, 2013 Category: Respiratory Medicine Authors: ltlhook Tags: Teenagers and Young People Source Type: forums

Vest Question
Hi all İ have a daughter aged 3,5 years and wonder about the frequency and impact value of vest system...can anyone help me please (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - November 4, 2013 Category: Respiratory Medicine Authors: kguben Tags: Airway Clearance Techniques Source Type: forums

I'm New. I'd love to talk!
Hey guys, my name is Natasha Grandall. I'm 18 years old, diagnosed with cf at 6 weeks old. Id love to talk to people make friends answer questions and hopefully you can answer mine. It's just great knowing I'm not the only one going threw this and theres a site where I can talk to people about it. You can add me on here as well as Facebook (Please tell me that you are from this site or I will not add you!!!) If you would like follow me on Instagram JustBreathe_65. I do have a few questions, maybe someone can answer them for me?!?!?! Thanks guys! (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - November 2, 2013 Category: Respiratory Medicine Authors: Natasha Grandall Tags: Teenagers and Young People Source Type: forums

A possible cause to a cardiac inssufficiency?
                           A possible cause to a cardiac inssufficiency ?   ¶Let us define by triple neutrality the state of the human body which checks the following conditions:¶      ¶- the physique does not suffer from any handicap.(let us understand  by there that all the cells of the body achieve their respective functions suitably).¶      ¶- the sensitive  is not seat of any no null feeling  ...
Source: Doc2Doc BMJ Cardiology - October 28, 2013 Category: Cardiology Authors: FOSTO Source Type: forums

IUI Sucess on 1st try?
My Husband and I have just finished our testing with our RE and he has suggested IUI as a treatment plan. We've been ttc for 2 years now and he has low morphology and of course with my CF, I have thick cm. We'll start our 1st IUI cycle next month. Has anyone done IUI with success on the 1st try? (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - October 27, 2013 Category: Respiratory Medicine Authors: ambermarie03 Tags: Pregnancy Source Type: forums

How many pounds should i gain during pregnancy?
Experts from all over the world advise women with a healthy BMI *– 18.5 to 24.9 – to gain between 25 and 35 pounds.If you are overweight, it's recommended you gain between 15 and 25 pounds by the end of your pregnancy period,at a rate of approximately 2 to 3 pounds per month,mostly in your second and third trimesters. hc scale is a need of your business (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - October 25, 2013 Category: Respiratory Medicine Authors: jousha22 Tags: Pregnancy Source Type: forums

pen pals
Looking for a pen pal. I'm 19 and have cf and have had cf since I was 1 year old. I love to write so if anyone with cf or not would like to be my pen pal just go ahead and message me and I'll send you my address. (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - October 20, 2013 Category: Respiratory Medicine Authors: Kat Jewel Hoffmann Tags: Teenagers and Young People Source Type: forums

News for gating, residual function and conductance mutations!
Hello all, With this post I'm hoping to reach patients with gating, residual function and conductance mutations. We have found a combination of two food supplements that have a synergistic effect on CFTR and can potentiate CFTR up to therapeutic levels (around 50%). This effect is backed up by 'in vitro' and 'ex vivo' (human intestinal CF cells) research. I have posted the news on several Facebook groups last week. Some people have started trying the combination and are already noticing effects…… (including some people that are already on K) I know some of you (like ourselves) are waiting for Kalydeco to be approved soon...
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - October 18, 2013 Category: Respiratory Medicine Authors: samaruba Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Information about how VX809 helps F508del and other mutations helped by VX809
I summarised a scientific article released in August that discusses how VX809 helps F508del, how the folding can be improved further and other mutations that were helped by VX809 in this study: http://sixtyfiverosesblog.wordpress....508del-part-2/ (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - October 18, 2013 Category: Respiratory Medicine Authors: GenH Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Pregnant! Now what?
Hi all. Here is a little about me. I am 34 years old and have been married for over 12 years. We have 2 adopted children. My FEV is 108% and am thankfully very healthy. We had done IVF in the past which resulted in an early m/c and ectopic pregnancy (gave up on that 6 + years ago!) We decided to give IVF one last try this year. We went to a new doctor and did PGD testing this time. I will be 5 weeks tomorrow, and I am terrified! (Excited, thankful, and terrified! Mostly because of how my previous pregnancies ended.) So I have questions! I have been taking Tobi Pod and Pro Air...Has anyone taken these during pregnancy? ...
Source: Cystic Fibrosis Pregnancy Forum - October 13, 2013 Category: Respiratory Medicine Authors: liveitup Tags: Pregnancy Source Type: forums

Nitric oxide pilot trial demonstrates an 8.8% FEV1 increase after 2 weeks
Novoteris recently announced that the FDA has granted orphan drug designation for inhaled nitric oxide as a treatment for Cystic Fibrosis. The pilot trial demonstrated an 8.8% absolute improvement from baseline after 2 weeks. Phase 2 trials are planned for 2014. More info here: http://sixtyfiverosesblog.wordpress....oxide-therapy/ (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - October 11, 2013 Category: Respiratory Medicine Authors: GenH Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

ProQR Receives Orphan Drug Status for F508del Therapy
ProQR Therapeutics recently received orphan drug designation for their Cystic Fibrosis therapy that targets the F508del mutation. This approach is different to the CFTR modulation approach (potentiators and correctors), which targets the defective protein. ProQR are targeting the Cystic Fibrosis defect at the RNA level. I have explained this further here: http://sixtyfiverosesblog.wordpress....08del-therapy/ (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - October 11, 2013 Category: Respiratory Medicine Authors: GenH Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Need to Talk?
Hello everyone. I know what it's like to have CF, I have had it since I was born. People try understanding and try to be there for you but sometimes you feel like you just need to talk to someone who has had the same issues or experiences. If anyone wants to talk I am here. I love talking and sharing! Please feel free to private message me or reply! :) (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - October 11, 2013 Category: Respiratory Medicine Authors: kristinsangels Tags: Teenagers and Young People Source Type: forums

Hello!
Hi everyone! My name is Kristin, Imm 18 years old. I would love to talk to other CF patients that are going through the same thing I am! (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - October 10, 2013 Category: Respiratory Medicine Authors: kristinsangels Tags: Teenagers and Young People Source Type: forums

First Time Post
Hi! I have a 14 year old daughter who just was recently diagnosed with CF...well CRMS a few months ago and now after a hospitalization 3 weeks ago with a mucus plug and partially collapsed lung they have changed the diagnosis to CF. Her genome is M470V and r75q with a 7t/5t variance. She has a borderline sweat test. We are told this is a mild CF. Her lung functions is 75% and she is pancreatic insufficient. This is the first time I have done a forum. I woke up this morning angry, scared, and feeling very alone. My mom suggested I should join a group, so here I am. I am confused by all this genome stuff and just need some s...
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - October 7, 2013 Category: Respiratory Medicine Authors: pootersmom14 Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Just lost my phase 3 place. :( DF508 /i507del
DF508/i507del (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - September 27, 2013 Category: Respiratory Medicine Authors: Rachie Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

$375 for a G5 Vibracare Percussor
Just wanted to alert the community that some G5 distributor called FI Sales is selling G5 Vibracare percussors for airway clearance under $400. I wanted to buy one for home & travel use and the lowest price I could find was $405. But FI Sales is offering a way to Make An Offer through their ebay store. I clicked that link and after an unsuccessful offer of $350 was rejected, my offer of $375 was accepted. Not sure if they will go lower or not. Best of all, FREE shipping. Here's a link to their site ... http://www.fisalesllc.com/g5_massage/g5_for_respiratory_care (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - September 26, 2013 Category: Respiratory Medicine Authors: cardman123 Tags: Airway Clearance Techniques Source Type: forums

C section v natural birth
Hi All I am 8 weeks pregnant with my second child and am 31 years old with an average FEV1 of 70%. My CF team have told me that all their pregnant CF ladies get delivered by C section. I am not very happy about this as I really wanted a natural delivery. I had a child 10 years ago and had a natural delivery then, and there were no problems with my lungs. Then my FEV1 was about 80%. But I had that child at a different CF centre. I read up on the net and was surprised to see that lots of CF ladies said they had been advised AGAINST a C section because of increased recovery time and strain on the stitches when coughing... ...
Source: Cystic Fibrosis Pregnancy Forum - September 23, 2013 Category: Respiratory Medicine Authors: dtc1982 Tags: Pregnancy Source Type: forums

Someone who has chronical rejection ?
Hi ! After 15 years with my donors lung I started to feel worse in my lungs, and last year I got the diagnose, that I already had manage to find out myself, chronical rejection. I got short breath as fast as I do something, my blowresaults are worse, I got back a port-a-cath, because the old infections came back :( . Im happy though, because i celebrate 18 years with my donors lungs in november. Probably I cant get a new lungtransplant, because of other problems with my body.I want to know if there is somebody else who are in the same situation ? What kind of symptoms do you have ? (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - September 21, 2013 Category: Respiratory Medicine Authors: sistercf Tags: Transplants Source Type: forums

NG Tube Trouble
I'm in the hospital for pneumonia, waiting for transplant. I had an NG tube placed Friday, but it hurt my throat like crazy. Then early Saturday morning I gave one solid cough, and it came out. The thing was still secured in my nose, and a loop of it was sticking out my mouth. I got another one today (Monday) but wondering if anyone else has had this and has any advice for keeping this one in??? (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - September 17, 2013 Category: Respiratory Medicine Authors: chris27rocker Tags: Transplants Source Type: forums

Anyone going to school part time?
My son (14 yrs, 8th grade middle school) is getting to the point where he just can't make it through the school day. We go to public school and they are good about working with us to modify assignments, etc, but it's just not enough. Joe isn't sick enough to be put into the hospital, but he's not well enough to be at his top baseline levels where he can get through the day either. I'm thinking of asking to modify his schedule to go in late and miss the first 2 hours daily and either make them up through online options or working on our own or just not doing them. Currently my son tries to make it to school, but often cal...
Source: Cystic Fibrosis Teenagers and Young People Forum - September 16, 2013 Category: Respiratory Medicine Authors: TreasureGoddess Tags: Teenagers and Young People Source Type: forums

Mini One G Button Issues
I just wanted to let everyone know that we have had major issues with the Mini One g-button. Our oldest got his button when he was 5 and will soon be 14. He was placed with the Bard and then we switched the Mini button. Our middle son got his button a year ago from last July and he had the Mic-key placed. Once we could change it we switched to the Mini One button because that was supposed to be so great. Once our middle child had it then we decided to switch our oldest to it as well. We never had issues until just this past 6 months. Our middle child has issues of the balloon busting or getting a hole which deflates the b...
Source: Cystic Fibrosis Teenagers and Young People Forum - September 14, 2013 Category: Respiratory Medicine Authors: JennyCoulon Tags: Teenagers and Young People Source Type: forums

Himalayan Salt Inhaler
Hey fellow CFers, I was wondering if anyone has heard of the Himalayan Salt Inhaler? Dr. Oz had it marked as one of the best new products. I was curious to know if anyone with CF has used it and if so, how did you like it/did it help you? This inhaler seems like it would be beneficial, of course, I will continuing my current medications. The Himalayan Salt Inhaler would not replace other medications that the doctors prescribe. Below is a link for the inhaler http://www.himalayansaltinhaler.com/ Thank you for your help and feedback! (Source: Cystic Fibrosis Alternative Medicine Forum)
Source: Cystic Fibrosis Alternative Medicine Forum - September 14, 2013 Category: Respiratory Medicine Authors: AmberFerguson Tags: Alternative Medicine Source Type: forums

going to start trying for real in a year.
hi guys! me and my husband got married over 2 months ago. We have been talking about having a baby for a while now after we've been married a year or so. I am pretty baby crazy and he has gotten that way also, although not as much as me he points them out wherever we go. I already know we are not going to be able to conceive naturally without some form of medical help because we don't use protection/birth control etc. We've been together 3 + years. I know cervical mucus is a huge issue among CFers and i know mine is thick from previous paps. Should i start to see medical help like going to fertility dr or whatnot right now...
Source: Cystic Fibrosis Pregnancy Forum - September 10, 2013 Category: Respiratory Medicine Authors: falloutboygurl16 Tags: Pregnancy Source Type: forums

vest wanted
I'm looking to buy a vest system, either a 104 or 105. The one I have now is on its last legs. I have the tubes and the actual vest although I'd take one if it happened to be my size. (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - September 9, 2013 Category: Respiratory Medicine Authors: tms122 Tags: Airway Clearance Techniques Source Type: forums

is home birth even an option?
Hello all, I read post frequently on this forum but have never posted myself. I am a young lady who has was diagnosed with CF from birth. I am not pregnant but wanting to know my options as I hope to have a family sooner than later. When and if I do get the chance to carry a child of my own, I would like a 100% normal/natural birth ideally in the comfort of my home. However, I know in TN (where I call home) it is against the law for a midwife to deliver a baby at home for a high-risk pregnancy. I was very sad to find this out and i'm trying to be positive but it is difficult not being sure what my options really are. SO. l...
Source: Cystic Fibrosis Pregnancy Forum - September 8, 2013 Category: Respiratory Medicine Authors: ms.rowan Tags: Pregnancy Source Type: forums

Back from Denver National Jewish.....(Kalydeco trial)
Hey Everyone! I know there were a few people interested, so I decided to start my own thread about my Denver experience. :) Sooo.... I made it to Denver on Tuesday to be screened for the Kalydeco trial. For those who don't know, it is the trial for residual function mutations. In order to get in, one must meet at least one of 3 criteria: A sweat test under 80, pancreatic sufficient, or diagnosed at or after age 12. We know that I don't meet the second two, so I can only get in if my sweat test comes in at or under 80. It was 83 when I was diagnosed in 1981, so it's really questionable. However, they seemed optimistic tha...
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - September 6, 2013 Category: Respiratory Medicine Authors: triples15 Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

The Vest 105 by Hill-Rom
I have one no longer being used with only 7.1 hours on it. If interested please message me. Comes with carrying case, all hoses, and manufacture's instructional dvd. Pictures available. Thank you (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - September 5, 2013 Category: Respiratory Medicine Authors: DianeF Tags: Airway Clearance Techniques Source Type: forums

looking for friends
Hi my name is Katrina I'm 19 almost 20 and was born with cf. I would love to have people to talk with my email is katrinajewel@ymail.com or Facebook me my name is Kat jewel. (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - September 2, 2013 Category: Respiratory Medicine Authors: Kat Jewel Hoffmann Tags: Teenagers and Young People Source Type: forums

big fat FAIL - thoughts please :(
Hi guys Yesterday I got my result for unit 2 of Biology AS level. I got 48/120 = E. Yes. An E. I feel like a total failure and I really can'tbelieve I got that!!! All my previous A levels when I was school age were straight As :( When I opened the paper I had a flick through and immediately felt relieved as there wasn'tany questio that I couldn't answer. I rea, ly felt like I knew all subjecgs reallywell. Do you think it could have been my exam technique? Has this happened to anyone? 3 weeks before the exam my son was born, but born not breathing and had to be revived. Once revived heshowed signs of respiratory distr...
Source: New Media Medicine - August 16, 2013 Category: Universities & Medical Training Authors: mcflurry Tags: Mature Students Source Type: forums

Spreading Awareness and Hope
Hi, I just joined this forum the other day, and I think this is great. I recently made image attached here while I was bored in the hospital, and I thought I would share it here. It's made to fit the size of the Facebook cover photo, so please feel free to use and share it to help spread awareness and hope. And feel free to find and add me on Facebook! Thanks! Ethan CF.jpg Attached Images CF.jpg (112.6 KB) (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - August 14, 2013 Category: Respiratory Medicine Authors: Ethan Miller Tags: Teenagers and Young People Source Type: forums

6 months post transplant
Today is 6 months post-transplant (L)(L) (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - August 13, 2013 Category: Respiratory Medicine Authors: moonlutz11 Tags: Transplants Source Type: forums

Ataluren Update- Phase 3 trial planned for 2014
PTC had their first investor conference yesterday, here is a brief summary: - Second phase 3 Ataluren study planned to start in the first half of 2014 with CF nonsense mutations - Plan to apply to the EMA (Europe) this year - Potential for combination with Vertex's Kalydeco discussed during investor conference, PTC looking at ways to evaluate this concept More info here: http://sixtyfiverosesblog.wordpress....aluren-update/ (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - August 13, 2013 Category: Respiratory Medicine Authors: GenH Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Iui
Has anyone tried IUI? My husband and I have been TTC for 2 years now with no luck. I saw a reproductive endocrinologist and they suggested we try IUI. My husband is not a carrier of the CF gene (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - August 10, 2013 Category: Respiratory Medicine Authors: ambermarie03 Tags: Pregnancy Source Type: forums

just over a year wait but on July 23 it finally happed I got lungs
Everything is going fantastic the hospital wanted to discharge me after just 10 days in ended staying for 12. I know that I still have a long way to go but very happy with everything so far. Dave, (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - August 9, 2013 Category: Respiratory Medicine Authors: Daverog75 Tags: Transplants Source Type: forums

Calista Therapeutics: F508del Research
I was just looking through my blog and realised I have not posted about Calista here. Calista Therapeutics are developing medications that target F508del. Pre clinical studies are underway and they are looking for funding for a phase 2a trial. The lead candidate is Procaftor, which appears to work to about 116% of VX809 (see the graph). I've added more info and the graph here: http://sixtyfiverosesblog.wordpress....8del-research/ (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - August 9, 2013 Category: Respiratory Medicine Authors: GenH Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Transplant and emotions
Hi all, I am almost 30 and about to begin my transplant journey. Will get evaluated next month. This is opening a can of worms with a lot of soul searching type questions and thoughts, which I believe to be part of the process. I would like to hear from people who have received their transplant and how was it for them in terms of moods/feelings, both before and after the transplant. What kind of feelings can arise after a successful transplant, after the initial shock and medications wear off? All my life I have not been able to mentally conceive a life where I do not have limitations; and even though I am a long time...
Source: Cystic Fibrosis Transplants Forum - August 8, 2013 Category: Respiratory Medicine Authors: nocode Tags: Transplants Source Type: forums

What else could go wrong
Hello my fellow cfers. Im just going to jump right in, I'm 25 and I just finished my evaluation for transplant and found out I will be getting listed for both lung and liver. However, when I got a ct scan of my abdomen they saw some of the nodules on my liver do something called "washing out" which they said could be a sign of cancer. So about a week ago I had an MRI of my liver done and it is a small cancer. They said this wouldn't stop me from being listed but they want me to have a procedure to, the doctor I talked to, said "burn away the tumor". Im not really scared about the cancer part because I k...
Source: Cystic Fibrosis Transplants Forum - August 8, 2013 Category: Respiratory Medicine Authors: Kyrav Tags: Transplants Source Type: forums

Proteostasis: F508del Research
Proteostasis have identified multiple compounds that improve the folding and trafficking of F508del. These compounds have a similar level of activity to VX809, and when added to VX809, about 40% of normal function is reached. Trials are planned to start in 2015. I've added more info and some images here: http://sixtyfiverosesblog.wordpress....8del-research/ (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - August 7, 2013 Category: Respiratory Medicine Authors: GenH Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

809 vs 661
My husband has been thinking of getting on the phase three trial of lumacaftor plus ivacaftor. However we both have some reservations. His mutations are both delta F508. He is 28 years old. He has an FEV1 of 75%. This has been stable for the last decade. And his enzyme levels were in the normal range last time they were checked (the center still suggested he take one enzyme pill with each meal). When I read the phase 2 results for this combo, the results are dismal. There was no FEV benefit. So now for the phase III, they triple the 809 dose. This seems to be somewhat grasping at straws. Like maybe his FEV will go up 2% ...
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - August 5, 2013 Category: Respiratory Medicine Authors: Pebbles8 Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Is this low libido?
So I think I have low libido. I have no large desire to have sex. Like, I think I'd be alright being a virgin tbh. Also, when I, masturbate, I get no major reward (really awkward saying this). Like, the reward is rather small, and it only lasts for like 3 seconds. Also, it seems like (some) of my guy friends only talk about getting in bed with girls and having sex, and honestly, I never think about that. I mean, I sometimes do, but all I think about is how scary it would be (I won't go into details, but I mean scary like I won't do a good job). tv shows make teenage guys my age sound like I'm supposed to plan on how to ...
Source: Cystic Fibrosis Teenagers and Young People Forum - August 3, 2013 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

Success killing Stenotrophomonas Maltophilia with TOBI Pod Inhaler
We've had a rough year dealing with the colonization of a new bug, Stenotrophomonas Maltophilia which is quite med resistant. They did an experiment on my daughter's sputum in a petri dish with TIP(TOBI Pod Inhaler) which is normally used to eradicate Pseudomonas Aeruginosa. and it killed some Steno! We started using the TIP on June 28th and our sputum sample from July 26th shows that the bacteria count has gone from 10 to the power of 4 to 10 to the power of 3. It's working! (Source: Cystic Fibrosis Alternative Medicine Forum)
Source: Cystic Fibrosis Alternative Medicine Forum - August 2, 2013 Category: Respiratory Medicine Authors: myfanwy Tags: Alternative Medicine Source Type: forums

Vertex Update: New data for other gating mutations and new trial for G551D
I've summarised the latest Vertex investor conference and added some images from the conference here: http://sixtyfiverosesblog.wordpress....vertex-update/ Main points: G551D A new study with VX661 & Kalydeco is planned for the second half of 2013 with patients who have G551D & F508del. Data is expected in late 2013 or early 2014. 2-5 year old Gating Mutations Part 2 is enrolling, results expected in the middle of 2014 Other Gating Mutations Phase 3 data: Mean absolute FEV1 improvement of 7.5% from baseline & 10.7% compared to placebo at 8 weeks (both p
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - August 1, 2013 Category: Respiratory Medicine Authors: GenH Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Elvated ALT levels
Hi all I have been taking Kalydeco for almost 5 months now. My liver test have been going downhill since. From normal range to an ALT level of over 250. Any words of wisdom? I have not spoken to the doc yet, but I am soooo worried. I don't want to stop Kalydeco - it is such a life changer. (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 31, 2013 Category: Respiratory Medicine Authors: sdeuber Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

St Johns Wort
Could this natural herb interfere with Creon, Pulmozyme and Albuterol? Is this safe for CFers? (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - July 31, 2013 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums