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

Hypertonic saline post TX
Im still doing it 11 montys post, and bellevue its beneficial. Anyone Else? /jan (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - July 30, 2013 Category: Respiratory Medicine Authors: Vejling Tags: Transplants Source Type: forums

pregnancy after tx
Has anyone on here gotten pregnant after a tx? I know people have, just wondering if any of them are on this forum. (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - July 30, 2013 Category: Respiratory Medicine Authors: musclemania70 Tags: Pregnancy Source Type: forums

Friends announcing pregnancy
I'm 33, so it's not surprise that a lot of my girlfriends are announcing their first pregnancies. My! I wasn't prepared for this....so much to process. Along with the usual stuff of... "my friend is pregnant. Oh my god. My friend is pregnant. Trying to process" and "crap, now I want one!" I was at a picnic yesterday and I found out 2 of my good friends are pregnant. I'm ecstatic for them! But....starting to think about myself, having CF, the possibility of babies, so many emotions. Will I or won't I? And maybe it's not up to me. All and all, it's nothing but good stuff, but I wasn't prepared for the ...
Source: Cystic Fibrosis Pregnancy Forum - July 29, 2013 Category: Respiratory Medicine Authors: welshwitch Tags: Pregnancy Source Type: forums

How can lung transplants change in 10, 20 years?
The idea of having to get a transplant one day freaks me out, like when people say the success rate is 90% it doesn't seem all that great, cause what if I were that 10% and I die in the hospital?! is there any way of knowing what the future holds for lung transplants, like 5, 10, 15, or even 20years? Currently, how long can someone live on a pair of new lungs? Can someone who got a new pair at age 20 live as long as a normal person? (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - July 27, 2013 Category: Respiratory Medicine Authors: Enzo2311 Tags: Transplants Source Type: forums

What would you do?
I'll post a case from my last night on call since the forum is dead. RN calls me at 10:00 PM to come see ICU pt for respiratory distress. Get to the bedside 10 min later. Morbidly obese WM (50'ish) with RR low 40's sitting upright in bed. Pulse 115, afib BP 80/40's by radial A -line spO2 89% on NRB Weight 425 lbs massive subq air extending up to head Head shape/size of a pumpkin Can not open eyes due to subq air in eyelids Awake and will follow commands but not talking Can open his mouth about 1.5 inches Quick update by RN: POD #3 from CABG, EF 45 % pre-op Extubated POD #1 Still on dobutamine for lowish CI (has triple...
Source: Student Doctor Network Forums - July 27, 2013 Category: Universities & Medical Training Authors: bigtuna Tags: Critical Care Source Type: forums

Were u on soc sec before transplant?
Were u on soc sec disability before transplant and if so, When where you cut off from benefits after transplant? How did they find out u got a tx? Thx! (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - July 27, 2013 Category: Respiratory Medicine Authors: musclemania70 Tags: Transplants Source Type: forums

Australian wanting to get Kalydeco from USA or UK (or anywhere!)
Hi all. Unfortunately Kalydeco (Ivacaftor) is not yet available in Australia. Well it is, but it is $300,000 per year (well outside the price range we can afford unfortunately). We are desperately seeking a way of getting the drug from USA or UK. Does anyone know if this is possible? Has anyone done it? Can anyone work out a way it can be done? It is unbearable to know that Kalydeco is out there and can help my daughter lead a normal life, but we can't get it. Any offers of information would be most appreciated. We are prepared to do what needs to be done to get access to this life saving medication. Thank you (Source: Cys...
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 27, 2013 Category: Respiratory Medicine Authors: Shani Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

New website on CF nutrition and natural health care
Hey folks. I hope you're well. I just wanted to let you know I have created a new website focused on sharing the science and research behind CF, proper nutrition, and natural health care. I've collected a lot of information on what kinds of foods CFers need and what kinds of foods we must avoid, plus some more in-depth science on how CF works at the cellular level up. I also explain what kinds of nutritional experiments I've been doing and how this has improved my health and quality of life. My goal is to empower CFers to make informed decisions about what we should be allowing into our bodies and how this impacts our heal...
Source: Cystic Fibrosis Alternative Medicine Forum - July 26, 2013 Category: Respiratory Medicine Authors: Epona Tags: Alternative Medicine Source Type: forums

Tummy problems!
Just wondering if people out there are the same as me and are having/had children? Im only 17 so no plans yet but i just like to know these things for future! :p My lungs are resonably good and iv only had IV antibiotics once so from that side of things I think iv a good chance of hopefully having kids in the future but my cf has caused me to have a really enlarged spleen and I wonder if there will be any room for a baby and also if all the pressure etc could damage my spleen :( Have any of you guys had a similar experience and what have your doctors said? Thanks so much :) x (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - July 22, 2013 Category: Respiratory Medicine Authors: Jellybaby Tags: Pregnancy Source Type: forums

Looking for anyone who has tried to get Kalydeco off label
***KALYDECO OFF LABEL*** We are trying to get together some information to help CFer's in the future get the help they need. If you feel comfortable sharing your information for the benefit of our wonderful CF community please email me at jcurrie@1starbank.com. We are looking for anyone who has tried to get on Kalydeco off label whether successful or not. We are needing your mutations and whether you were approved or denied and any information that could be helpful. Thank you in advance for any information. (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 19, 2013 Category: Respiratory Medicine Authors: JENNYC Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

V520f
I am desperate to know any others with the V520F mutation, or if anyone knows what class of mutation it is. The little bit of information I can find on it makes no sense to me. I'm just wanting to know if I can fight for Kalydeco for my daughter with it. Her other mutation is Delta F508. Thanks so much, Amy (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 17, 2013 Category: Respiratory Medicine Authors: amykay1965 Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Today show and Kalydeco
I can't believe that no one has posted this yet!!! If you haven't seen this today....you need to take a minute and watch it!! This is a story about how siblings that have the same Dr, same CF genes, and same health insurance got two totally different responses to their Kalydeco request!! http://www.today.com/news/man-battles-health-insurer-drug-could-save-his-life-6C10636133 This is an amazing story!!! I guess we were on the right end of the russian roulette!! Scary!!! (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 16, 2013 Category: Respiratory Medicine Authors: JENNYC Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Trying to concieve help please
Hi I'm Kim and just wondering about conceiving. My husband and I have been trying a year ( even though I got sick for 3 months) and I used suggestions from the cf form using preseed and musinex during ovulation. It has yet to work. I'm looking into fertility treatment but besides taking vitamins and using preseed and musinex is there anything else that might give me better chance of conceiving naturally with out having to go thru and pay for iui or ivf and all fertility treatment. I get poked and tested enough with cf it would be nice to pass all this but it is what it is. Any suggestions is appreciated. (Source: Cystic Fi...
Source: Cystic Fibrosis Pregnancy Forum - July 11, 2013 Category: Respiratory Medicine Authors: Kxray328 Tags: Pregnancy Source Type: forums

Pre-term Labor and CF
Hello, I had some questions for the CF moms out there who may have experienced this. I am 24 weeks and had an OB appt today. I mentioned that I had been having some cramping, and honestly, I really didn't think to mention it as I have been cramping the whole pregnancy and have been told up to this point that it is normal. She checked my cervical length, and it was 24mm. I guess the normal for this gestational age is 35-40 weeks. I've been told to drink plenty of water, "take it easy" and follow up in a week to check again. From what I can find, anything under 25 at this stage is a higher risk for pre-term labor...
Source: Cystic Fibrosis Pregnancy Forum - July 11, 2013 Category: Respiratory Medicine Authors: jrotier Tags: Pregnancy Source Type: forums

New Drugs and insulin use
Hi all. I read the thread about decrease in need for enzymes since starting the new drugs but I was wondering about insulin. Has anyone with diabetes seen a reduction in their insulin use/need? Hoping to get in on the phase 3 trial as I am double delta F508. Thanks. Kalen (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 10, 2013 Category: Respiratory Medicine Authors: ksy8384 Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Abby Clinic Update
I have updated everyone on facebook but I haven't been on here in quite some time because I have been on my first Vacation since Abby was diagnosed. I actually got to take my full 2 weeks and didn't have to spend my entire vacation at the hospital!!! It was fantastic!!! It would have been better had we have not been broke but still loving life with Kalydeco!!! So Abby has been taking Kalydeco since June 28, 2012. We went to clinic a couple of weeks ago and discovered that we had a completely new CF team! Dr was gone...fellow leaving...and nurse had a baby and not coming back. Wow!! So here is the comparison: ................
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 9, 2013 Category: Respiratory Medicine Authors: JENNYC Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

EasyComp Compressor
We have had our EasyComp breathing compressor for about 7 months now and it is a lot more powerful then the Phillips breathing machine we used to have, as well as a lot heavier! We are about to take a trip to Texas in a few days and I was wondering if anyone who owns this device carries it around due to its odd shape and weight? (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - July 4, 2013 Category: Respiratory Medicine Authors: Bellithorp Tags: Airway Clearance Techniques Source Type: forums

Cystic Fibrosis and Hypotonia
Anyone out there with these two together? Our 10 yr old has both of these and wondered if there is any studies on this or recommendations & if we should do her cpt treatments different. (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - July 2, 2013 Category: Respiratory Medicine Authors: TICMOMOFF1 Tags: Airway Clearance Techniques Source Type: forums

Two hill-rom vest machines
I have two different hill-rom vest machines with an adult medium new 3-d vest garment (1) is model 103 with 208 hours everything on it works great timer pressure and frequency all work paid 16,000 out of pocket asking $950. (2) hill-rom vest model 105 digital screen only about 20 hours on it new carrying case smaller portable version like new paid 20,000 out of pocket asking 3,500 message if interested thanks:) (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - July 1, 2013 Category: Respiratory Medicine Authors: dextersbabygirl4ever Tags: Airway Clearance Techniques Source Type: forums

A 10m $ Paper Based Device to Detect Infectious Diseases
University of Washington got funds about 10m dollar to develop paper-based device which can test and detect infectious diseases. In the initial stage they started testing influenza virus & other sexual transferred diseases. Here are more details about this news. (Source: Cystic Fibrosis Alternative Medicine Forum)
Source: Cystic Fibrosis Alternative Medicine Forum - June 28, 2013 Category: Respiratory Medicine Authors: emilymainzer Tags: Alternative Medicine Source Type: forums

pregnant?!?!?
I have been on time with my period and then all of a sudden I missed it this Monday. I have been feeling sick lately and me and my bf did it two or three days before my ovulation. I have been bloating and just had cramp today. I was wandering if I was pregnant? We are going to test on Friday. (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - June 27, 2013 Category: Respiratory Medicine Authors: Kat Jewel Hoffmann Tags: Pregnancy Source Type: forums

Ataluren Update
A recent study found that Ataluren failed to enhance read through past stop codons (they tested all the possible stop codon combinations in different situations), instead they suggested that Ataluren interacted with the drug screening system, the luciferase enzyme. I've summarised the findings here: http://sixtyfiverosesblog.wordpress....aluren-update/ “Where does this leave us with PTC124 and its potential to tackle the 10% of cases of genetic disease that are thought to result from nonsense mutations? We should remember at this point that McElroy and colleagues only test cells (not intact animals), that the...
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - June 26, 2013 Category: Respiratory Medicine Authors: GenH Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums

Ontario Trillium Drug Program
Hello, Just wondering if there are any people from Ontario on the Trillium Drug program? I am on the transplant list and will have my surgery in Toronto. I have an identical twin brother who had a transplant over 4 years and I saw what he went through with the side effects of Cyclosporin. Luckily for him his employer had a drug plan and after 6 months he switched to Tacrolimus. I don't have a drug and Tac is very expensive. just if anybody is using trillium and how long does it usually take to get reimbursed. Dave, (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - June 24, 2013 Category: Respiratory Medicine Authors: Daverog75 Tags: Transplants Source Type: forums

Hill-rom vest model 105
I have a hill-rom model 105 vest i paid 25,000 out of pocket asking 2,500 about 20 hrs clocked on it comes with carrying case. Like new . Nice message me if interested. Thanks (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - June 24, 2013 Category: Respiratory Medicine Authors: dextersbabygirl4ever Tags: Airway Clearance Techniques Source Type: forums

Coughing up blood?
I just started my IVF shots on Saturday to prepare for my surrogacy. Today I started coughing up blood, which I have never done. Has anyone had this problem? I really don't want to stop the drugs! (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - June 24, 2013 Category: Respiratory Medicine Authors: sue3582 Tags: Pregnancy Source Type: forums

IVF success stories, please share need to hear some positive stories
Hi everyone I posted on another thread before asking about early stages of pregnancy. My name is Elaine, 32 with CF. We just finished our first round of IVF, single embryo transfer after 2 days. It started off so well our first beta hcg blood test 12 days post transfer just last Monday 17 June was 45 iu L we were sooooo excited as that was a good result! 4 days later just Friday past when the 2nd beta hcg blood test was due I had bleeding when I went to the toilet and I knew this wasn't a good sign and then the blood test confirmed as it had declined it was now 7 iu L! This was our first full round of IVF. We had started...
Source: Cystic Fibrosis Pregnancy Forum - June 23, 2013 Category: Respiratory Medicine Authors: laneyb Tags: Pregnancy Source Type: forums

Pep mask physio
Hi, Just wondering if any of you guys know where I could by a new AD belt to use with my pepmask? Mine is getting old! Thanks :) (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - June 22, 2013 Category: Respiratory Medicine Authors: Jellybaby Tags: Airway Clearance Techniques Source Type: forums

Has anyone had any experience with using public Steam Rooms and Saunas
I joined a gym/health club that has a nice steam room that they infuse with essential oils, and they also have a big sauna. Basically I feel really tempted to try them out after a workout. Has anyone had any experience with public steam rooms and saunas? I'm 22 and have Cystic Fibrosis. Thanks, Genevieve (Source: Cystic Fibrosis Alternative Medicine Forum)
Source: Cystic Fibrosis Alternative Medicine Forum - June 21, 2013 Category: Respiratory Medicine Authors: Genevieve11 Tags: Alternative Medicine Source Type: forums

Wheezometer Device for Paediatric Asthma Patients
Wheezometer device helps asthma patients to meet a critical unmet need for better and easy monitoring tool for young asthma patients. For more details you can go through this url. (Source: Cystic Fibrosis Asthma, Allergies and Green Forum)
Source: Cystic Fibrosis Asthma, Allergies and Green Forum - June 14, 2013 Category: Respiratory Medicine Authors: emilymainzer Tags: Asthma, Allergies and Green Source Type: forums

Are A-level Chem and Bio enough?
Hi there, Another non-standard, 'mature' aspiring medic here! I am an Assistant Respiratory Physiologist, previously bank HCA covering all wards, including A&E. I'm a single Mummy to a beautiful little boy, who has just turned four. He has been very poorly for the last three years so only now, I've been able to seriously start the ball rolling now that things are looking up a little and he is due to start school in September. My GCSE's were taken in 2002 and really aren't worth mentioning. I was a good girl no self esteem and bullied throughout upper school... blah blah.. No excuses. I did a BTEC National Diplom...
Source: New Media Medicine - June 13, 2013 Category: Universities & Medical Training Authors: Lau23 Tags: Mature Students Source Type: forums

Hill-rom vest model 103
I have a Hill-Rom vest model 103 im trying to sell it has not been used long I paid 16,000 out of pocket nd would like to sell it for around 2200 but def willing to go down . I wouldn't sell it if I didn't pay so much out of pocket I have a new one . it will come with the orginal box nd the new vest they call 3-d vest from Hill-Rom never been used its an adult medium it has one hose missing cause I had to replace mine on my other machine but they r easily replaced if instrested u can send me a message on here or to dextersbabygirl4ever@gmail.com. thanks Attached Images image.jpg (13.4 KB) (So...
Source: Cystic Fibrosis Airway Clearance Techniques Forum - June 8, 2013 Category: Respiratory Medicine Authors: dextersbabygirl4ever Tags: Airway Clearance Techniques Source Type: forums

3 months Post Transplant...
My boyfriend was transplanted Feb 24, 2013. He was at about 13% lung function at the time and was listed for about 8 months before transplant. He had one dry run around Thanksgiving of 2012. He was very hesitant about this whole process. In January of 2004 he got a bad case of pneumonia and was put in a medical induced coma. We live in Syracuse NY but he was transported to Boston during this time. he got put on the transplant list there. He was eventually taken off the list because he seemed to bounce back. After being hospitalized for about 6 months... He went back to his normal life.. Even playing recreational sports aga...
Source: Cystic Fibrosis Transplants Forum - June 7, 2013 Category: Respiratory Medicine Authors: Cmk0808 Tags: Transplants Source Type: forums

How did your decline go?
If no one wants to answer that's fine. I'm honestly just curious. How did your decline leading you to need a lung transplant go? I am moderately healthy for a CFer, and have never really known anyone go from being healthy to transplant, only ever met people while they were waiting for the transplant or had already had one. I always wonder, like where were your PFTs 1 year before, 5 years before? I just it's hard for me to wrap my head around sometimes. I mean I've had my own decline, but I'm no where near transplant yet thankfully, and I just always wondered how drastic or fast it is? Or can it happen quickly or slowly? I ...
Source: Cystic Fibrosis Transplants Forum - June 5, 2013 Category: Respiratory Medicine Authors: Lena Bean Tags: Transplants Source Type: forums

24 hour ph study
Hi everyone. As of right now I only need one more test before my lung and liver team present my case to the transplant committee. It's the ph study, you know, the one where they shove a tube up your nose and down your throat to measure your acid reflux. Anyway, I tried it outpatient last week and couldn't stand it. I was in so much pain and throwing up every time I coughed so I ended up taking it out 7 hours in. They want me to try it again on Monday, I'm in the hospital for an exacerbation right now so they say they can give me better stuff to help my throat from being so sore and to calm down my gag reflex. I was just ...
Source: Cystic Fibrosis Transplants Forum - May 30, 2013 Category: Respiratory Medicine Authors: Kyrav Tags: Transplants Source Type: forums

Kalydeco and transplant
Has anyone ever heard of a patient on Kalydeco, who hasn't responded well and has ended up with a transplant anyway? (Source: Cystic Fibrosis Transplants Forum)
Source: Cystic Fibrosis Transplants Forum - May 23, 2013 Category: Respiratory Medicine Authors: echolaura Tags: Transplants Source Type: forums

Researchers Find Immunity Protein That Ramps Up Inflammation, and Agents That Can Blo
http://www.sciencedaily.com/releases...0331165601.htm "The research team, led by Bill B. Chen, Ph.D., associate professor, Division of Pulmonary, Allergy and Critical Care Medicine, conducted experiments in which mice that lacked the ability to make Fbxo3 were infected with a strain of Pseudomonas bacteria, and found that they had better lung mechanics and longer survival than mice that still made the protein." Read more at link above. (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - May 23, 2013 Category: Respiratory Medicine Authors: CyrilCrodius Tags: Airway Clearance Techniques Source Type: forums

Anyone had experience with essential oils?
Hi there, I was curious if anyone has had any experience with essential oils, particularly do Terra brand? I have read some really encouraging testimonials on these and I am continuously looking for ways to combine my conventional CF clinic medical model with alternative therapies to boost my overall health and wellness. I would love to hear any feedback! Thank you! (Source: Cystic Fibrosis Alternative Medicine Forum)
Source: Cystic Fibrosis Alternative Medicine Forum - May 23, 2013 Category: Respiratory Medicine Authors: kristenj Tags: Alternative Medicine Source Type: forums

Fundraising for CFer awaiting double lung transplant
It is that time of year again. For the second year in a row I am promoting a Standup Comedy show to raise money for CF and / or CF Patients. This year we are raising money for Team TLC. Team TLC is a team comprised of friends and family of Terry Lee Carroll. Terry is a 32 year old CF patient who is currently awaiting a double lung transplant. Terry lives in Southgate, KY; just a short distance across the river and a couple miles from Cincinnati, OH. During his wait, he and his family will need to make several trips to the Cleveland Clinic, where he will eventually have his surgery. As you can imagine the financial burden t...
Source: Cystic Fibrosis Transplants Forum - May 22, 2013 Category: Respiratory Medicine Authors: skeeter Tags: Transplants Source Type: forums

Getting the cost of Mini One AMT coverered
We have twin girls with CF. They are 11 months old and after battling with ng feeds for the last 10 months- they had Mini One tubes placed last week. Going into the surgery- the doctors told us that we would have 3 mini ones covered each year through insurance. But now as we are trying to get our replacements ordered- insurance is telling us that they only cover $36 of the $190 cost because that is what the government says a g tube should cost. Does this sound accurate based on anyone's experiences? We do not qualify for gov't assistance through SSI, BCMH, or Medicaid. Any thoughts or ideas or similar experiences would be ...
Source: Cystic Fibrosis Payment Assistance Resources Forum - May 21, 2013 Category: Respiratory Medicine Authors: emacsurak Tags: Payment Assistance Resources Source Type: forums

Vest model 104(105,205) Hill-Rom - need help with configuration for 4years old CFboy
Hello, please can someone help us with configuration and adjusting Vest model 104 (105,205) Hill ROM for 4 years old boy with CF? My friends in Central Europe bought 104 model ...and doctors have no experiences with the vest system in our country. How setup (what values): oscillation frequency (5-20Hz), force (1-10) and duration of treatment (in minutes) for 4year old boy. How many times a day is the treatment ok for him? Should they buy for him Chest Vest or Full Vest? Thank you for any tips! (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - May 21, 2013 Category: Respiratory Medicine Authors: Johny81Johny Tags: Airway Clearance Techniques Source Type: forums

How to begin to address infertility issues? (Male partner who has CF)
Hi all, My husband has CF. We have been married 3 years and have always hoped that we will be able to have a family, whether biologically or through adoption. We have decided recently that we might be ready to start exploring our biological options. I have done enough research to know that we will likely have to do IVF, and that the first step is to do genetic counseling (I have no idea if I am a carrier). However, we recently moved from Massachusetts to North Carolina... and I am honestly at a loss as to how to begin this process. I don't have any healthcare providers set up yet (we moved one month ago). Another comp...
Source: Cystic Fibrosis Pregnancy Forum - May 17, 2013 Category: Respiratory Medicine Authors: cf1gf1 Tags: Pregnancy Source Type: forums

Fertile CM
Hello, Ive been looking into why I have fertility problems lately. Not fully ready to have a baby but getting there. I was looking up some stuff online and I found this product called Fertile CM. CM stands for cervical mucus. This is my back story..... I am a 27 year old woman, never been on birth control, been in a very long term relationship, figured if it happens it happens, I am healthy and don't need much meds, I am at an overly good weight of 150lbs and 5'7 in height, I have completely regular periods, and they last exactly 3-4 days. I went to have a blood test done to see if my egg count was good and they test for a...
Source: Cystic Fibrosis Pregnancy Forum - May 16, 2013 Category: Respiratory Medicine Authors: kmhbeauty Tags: Pregnancy Source Type: forums

Nothing coming up!
Is there anyone out there like this or is it just me! I'm not very productive at all! I bring tiny amounts up a day even after physio etc and I'm not sure weather this is good or bad and my lung functions around 55-58% so somethings wrong somewhere. My doctor always asks if I bring a tablespoon or teaspoon up but It's more like the size of a thumbnail I bring up a day! (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - May 15, 2013 Category: Respiratory Medicine Authors: Jellybaby Tags: Airway Clearance Techniques Source Type: forums

diffusing essential oils
I have several friends who claim great success keeping their families healthy by using essential oils in a diffuser. In doing some research on the web, I found that there are certain oils that can be greatly helpful for those with CF, but I also found that there can be some concern for CF kids about any diffuser that uses water along with the oil? Not sure why? Anyone here use a diffuser or know which ones do or do not use water? or if that's even being overly worried and I can really pick whatever diffuser I want? ;) TIA - Heidi mom of Dekorrah - 5mo son with Delta F-508 CF (Source: Cystic Fibrosis Alternative Medicine Forum)
Source: Cystic Fibrosis Alternative Medicine Forum - May 14, 2013 Category: Respiratory Medicine Authors: heidikk Tags: Alternative Medicine Source Type: forums