Search results

Hi Autumn, I can’t tolerate Tobi and I’ve never tried the Podhaler either. I’ve also wondered if I’d be able to tolerate it. But just from reading people’s comments over the years, it does seem like chest tightness/wheezing is one of the main side-effects. It’s a shame you’re allergic to...

Thanks. This is the one I was referring to: http://clinicaltrials.gov/ct2/show/study/NCT01784419?term=cystic+fibrosis&recr=Open&state1=NA%3AUS%3ACA&rank=7 But it looks like it hasn't been active since 2015. But I guess it doesn't say it's officially closed either.

Sarah, I understand your concerns about time spent doing treatments that may not be necessary given her high lung function and apparent in-vitro correction of the defect. Hopefully there'll be research on this subject soon and it will clarify things for you. Thanks for the information about...

Thought I'd pass along an e-mail that I received today from CFF requesting that the CF community send an e-mail to their Congressperson asking them to protect our healthcare coverage. http://act.cff.org/ccfpeUx?resetcookie=1 A message from the CFF: You may have heard that this week, Congress...

Hi Millie, I'm not sure if you saw my most recent PM. Good news- There's another mom that would love for her daughter, who is 12, to connect with someone her age with CF. :) Hopefully this will help you feel not so alone.

Hi Millie- I sent you a private message.

From CFRI website: "Our next online Mindfulness Based Stress Reduction (MBSR) course starts on Thursday, February 2 at 6pm PST. Class size is limited to 25 people, so sign up early! Free to those with CF; $50 for family members and caregivers. Led by Julie Desch, MD. MBSR combines body...

A few months ago I had responded to another mom on this site with the same idea for her 9 year old son. Here's the thread: http://forums.cysticfibrosis.com/showthread.php/181518-looking-for-other-that-want-to-connect? She had mentioned starting up a private Facebook group for pre-teens with CF...

Thanks for this information. I’ve never heard of the Aerobika. I like the fact that it works with your nebulizer. I have an Acepella, but only use it when traveling and I don’t feel like carting around my vest. The Aerobika sounds like a better alternative since it can be combined with...

It’s completely understandable that you are experiencing depression. You’re not alone. Having a child that has been diagnosed with a progressive, chronic disease can be life altering. As an adult with CF, I struggle with depression and anxiety myself and am on medication and go to therapy...

Watched NBC nightly news tonight and there was a segment on the importance of an online community for cancer patients. Different diagnosis but same message: A forum like cysticfibrosis.com not only provides emotional support but also empowers patients by sharing knowledge that allows them to...

Here’s the response from someone that is on FB CF Mummies group: “I dont have a link to the group but she´ll have to search for "Cystic Fibrosis mummies" on facebook. Once on the page she´ll have to ask to join the group which is secret and explain that she has cf herself and is a mother to...

Congratulations on your pregnancy, but I’m sorry for your worry about your health. It’s been awhile since I’ve been through this as my youngest is 13 years old, but I do remember that I had a decrease in PFTs and increase in symptoms with my second pregnancy. I ended up on a course of IVs in my...

Have you ever tried inhaled Colistin? I alternate Colistin with Cayston every month. For me, my Colistin months are usually better than my Cayston months. I know you have a lot of issues with reactive airways, so you may not be able to tolerate it, but it might be worth a try. It’s a bit of...

I agree, it’s confusing. The CFF, Foundation Care, and Pari all have different instructions. This is what I do--It's a combination of steps from the different sources, taking what's most convenient and what works best for me. (can’t say for sure if it’s “correct”, but I’ve been doing it for...

I’m pretty confident that my insurance will eventually cover. My case is strong. But I’m worried about the time it may take to appeal and the risk of me being without Kalydeco during that time. With the cost of almost $1,000 a day, it works to their advantage to drag this out as long as...

A few months ago, I shared some info. regarding an Early Access Program (compassionate use) for Kalydeco for some residual function mutations. This is not a new program, but it’s not well known. It’s so upsetting to think a compassionate use program hasn’t been accessed because of lack of...

Thanks for posting this—great advice. Unfortunately I’m in the middle of this now. For the first time in 2 years, my insurance company is requiring PA for Kalydeco. I received a letter in the mail 3 weeks ago stating that “starting January 1, 2017 your plan will require Kalydeco to be reviewed...

ENROLLING | RESTORE CFTR FUNCTION Phase 2 study of VX-440 combination drug in people with cystic fibrosis › DESCRIPTION: This study is taking place at multiple care centers across the U.S. It will look at the safety and effectiveness of the drug VX-440 in combination with ivacaftor and/or...

Nope- I wasn't there-- just tried to keep up with everything online if I could. Unfortunately, CF patients aren't invited to attend because of the CFF's infection control policy. Here are recordings of all the plenaries. I've watched the first two so far. The message of hope is so powerful...