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It's me again... wanted to add that I think you do have to be a resident of the US to qualify for the grant. I'm not sure if you're here or not. If not, so sorry to get your hopes up. :(

Hi Nuciko! Try this link. https://www.healthwellfoundation.org/fund/cystic-fibrosis/ It should take you to the page you need. It tells about the program and if you scroll down there is a button that says "apply now" Let me know if that doesn't work. After you get approved for the Healthwell...

Wow. :( While I can understand the reason behind it, I find this to just SUCK. Pardon my language. I agree that for some women/girls this will be prohibitive. :( I am currently in the Vertex 770/661 trial and am on oral contraceptives. I've not heard mention of an IUD. I have a study visit...

Hey LL, I know you've probably seen me going on about this before, but wanted to mention if you sign up for Healthwell they will pick up that $22 copay for you. And any other copays you have on your CF specific drugs. The pharmacy just runs the copay card after your other insurance(s) have...

Hey, on a side note, what exactly is Bethkis? Is it the exact same formulation as Tobi, but just a smaller ampule size? I guess I don't get it. My doctor did mention that it may not be the Tobi itself that I'm reacting to, but rather one of the carrier agents (what's mixed with the Tobramycin...

Thanks ladies! Yes it seems like, generally speaking, the podhaler causes more tightness/wheezing than Tobi. That's what makes me super apprehensive to try it. I think that J could be onto to something with trying something different. I might ask my doctor if we can think outside of 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...

Hey Kenna, Yep, exactly what Rebjane said. I've had 2 brochoscopies with lavage (saline and mucomyst). I asked the doc why it couldn't be used as tool for cleaning out the lungs and he stated that the mucus starts regenerating within minutes and there is risk of introducing new infection...

Excellent, thanks J!

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 Jenny! So sorry to hear you are having to worry about all of this. :/ I don't think I can be of a ton of help here because I have never personally been on Medicaid, but I'll tell you what I know. :) As far as the not paying for home IVs.,.. you did, in fact, read that somewhere but it was...

Hi Kenna! Sorry to hear about needing sinus surgery, but you'll feel so much better when it's all said and done. I've had about a bajillion sinus surgeries (okay, maybe 6 or 7), and while the old ones (80s and 90s) were pretty awful all the way around, nowadays they are they're not bad...

Thanks everyone for the replies. This article just came up in my newsfeed which is interesting. http://www.kens5.com/mb/ext/news/nation-now/trumps-win-just-made-these-investors-richer/273/nationnow/5BgGWYBIkgm4EMeUMWoIKc Mentions Vertex specifically and says that biotech and pharma are...

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...

Hey Lisa! The CF clinic is at Dell Children's Hospital, but adult patients are hospitalized at Seton hospital. I've been going there over a year now, and I'm not sure if it technically has a name? ;) My bills come from "Austin Children's Chest Associates" and "Seton". The adult doc is Dr...

Hey there mom, Of course you are welcome here and most definitely are not stepping on toes. I'm so sorry that you have been given this news and are having to grapple with the unthinkable. I want to tell you this though.... I have read, and reread your post a few times. I feel like by reading...

Hey Dank! I have been in SA for about a year and a half. Moved here from Nebraska. Last year was the first winter I made it through without needing IVs for as long as I can remember. I wondered if it was a coincidence or a result of the much less harsh fall/winter. Alas, I can't say the same...

Hi Kat, If you are on SSDI you can earn up to the amount that the Social Security Administration considers you to be performing "substantial gainful activity" or SGA. For 2015 you can earn up to $1090.00/month before they consider is SGA. In 2016 that amount will be $1,130.00/month. If you...

J, So sorry. That must be beyond frustrating and maddening. I agree with Love and think it would be great if we could post that info somewhere. We'll put our heads together! :) Autumn