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Just thought I'd share a something that I found amusing. In my 36 years as a CF patient I've heard a lot of things, but this was a new one. I went to the lab at my CF hospital to have my blood drawn a couple days ago. I sit down in the chair and as the phlebotomist is looking at the orders and...

Hi All, My lung function has see a small decline at each of my last two check-ups. I don't have any increase in symptoms or feel "bad" per se, so we are not treating it at this point. My doctor really backed me into a corner on exercising, rightfully so. ;) Exercise is the one area where I...

Hi all, Many of us are watching and waiting anxiously to see what becomes of the Affordable Care Act (ACA). As most probably know, today the proposed bill(s) to replace the ACA was rolled out. I was personally very relieved to see that some of the key provisions that protect those of us...

Hi all! Hey, I plan on talking to our tax lady about this, but thought some of the folks here may have some good insight.. Today I received my 1099 Misc for a Vertex study I am currently in. This is the first time I've made enough from a study to receive one. Does anyone know if the...

Hi all, Because I cannot tolerate Tobi (bronchospasms), and am allergic to colistin, the only nebulized antibiotic I can use is Cayston, and it doesn't give me the boost it used to. I hate not having any other weapons in my arsenal. :/ Anyway, I am curious if anyone who has problems with...

Hi All! Since CF vitamins can be pricey I wanted to share this info in case it is helpful to anyone. If you have the Healthwell grant to cover your prescription copays, you can receive FREE vitamins specifically formulated for CF from MVW Nutritionals. All you have to do is call them at...

Hi everyone! This is totally meant to be light-hearted and funny, but a tiny bit of a vent as well. :) Many of us are familiar with the "spoon theory", if not look it up when you have a minute as it's worth a read...

Hi everyone! Sorry I haven't been around much lately, life has taken over as I like to say. Hoping to be around more as things (hopefully) settle down. Anyway, last night I found myself losing sleep over the likely repeal of the Affordable Care Act (ACA or "Obamacare"). Regardless of which...

Yikes, I just received this email from the Cystic Fibrosis Patient Assistance Foundation. Comes as quite a surprise that they are shutting down at the end of the year. I briefly looked at the Healthwell website to check out the guidelines and see what meds they provide assisance with, but it...

http://www.ksat.com/news/corpse-taken-from-funeral-home Julie (25) passed away from complications with cystic fibrosis. Her body was stolen from the funeral home after her service on August 15th. Her poor parents are beside themselves. :( Hoping and praying they find her soon. Autumn

Hi all! I have recently read a few somewhat concerning things on social media regarding Kalydeco, that I had not previously heard anything about. Instead of spending hours googling trying to glean info, I thought I'd ask y'all (I say y'all now) on here because we have so many super...

Hi All!! This article immediately made me think of Liza's (Ratatosk) situation with finding her pharmacy was billing her insurance for Tobi that she never ordered or received....This is a pharmacy in the Nebraska town we just moved from. There is not a CF clinic in Lincoln at all, but it says...

Hi everyone! I recently heard that CF Services pharmacy is no longer going to be carrying Cayston. I'm not terribly devastated over this because I've had a ton of billing issues with them. I guess this is the push I needed to finally jump ship. So it looks like I'll be switching to...

Hi everyone! As most of you have prob read by now, we recently moved to Texas. I am just now going about getting my Texas driver's license. I printed out the application and started filling it out, and came across a series of medical questions. I was able to answer no to all the usual ones...

Hi everyone! I put this in the off topic section because I am asking in regards to my 2, almost 3, year old daughter who does not have CF. I just figured this forum is a great place to ask since the parents of CFers have lots of experience with doctors. As many of you have probably read in...

Hey everyone, You may have read in an older thread that we are moving to San Antonio Texas for my husband's job. It's a done deal, he's already there working, and looking for a house. I was just reading on the American Lung Association's website about air quality. It ranks cities in 3 areas...

Hey everyone, Sooooo, my husband has a job interview next week in San Antonio. He has already had 2 phone/skype interviews and now is one of 3 finalists for the position. It would be a great opportunity, but the thought of moving scares the heck out of me. We're in Nebraska and I've always...

Hey everyone! I'm the CFer in our family so I'll hope you'll forgive me that this isn't directly CF related. ;) I just figured this is an excellent population to ask this question! Our 23 month old daughter has a nasty sinus infection and was prescribed Augmentin. We had it flavored at the...

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...

Hey everyone, So today my sister texts me (during her workday, which is odd) to tell me that her friend had just emailed her an article about a new drug, called Kalydeco, that was just approved to treat CF. So my sister was texting me with the thoughts/hopes that this new medication would help...