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Holy cow Ratatosk, that.was.awesome!!! Thanks so much for posting it. Within a couple minutes they had faxed my letter to both of my representatives. They do it all for you. Wow! Please everyone, if you don't think this bill is going to protect us but have been hesitant to call or write a...

Here it is! Unfortunately I'm not sure if Jenn is still with us. :( Maybe someone else on here knows Jenn? http://forums.cysticfibrosis.com/showthread.php/17356-MediCARE-participants-who-receive-home-infusion-services?highlight=Medicare%20home

I'm so sorry for the crappy situation you're in! :( We did have a member here who figured out how to get home IVs through original Medicare but I haven't seen her around for awhile. Pretty sure her name is Jen and screen name "justducky". I'll try to search for an old thread and see how she said...

Me again! I think you'll do better there in terms of allergies. The air will also be drier and that may help too. Also, even though Moogie is short-haired he may LOVE the cold and snow. ;) I'd love to see him in it for the first time. Your little guy will prob love it too. Maya absolutely...

Hey Miss!! We looked at Colorado too, before we moved back to Nebraska. I think it's an awesome place. I've always heard amazing things about National Jewish. I saw Dr. Nick once when I went there to try to get into a Vertex trial. I got a good vibe from the clinic.;) So I only have a couple...

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 again all! I'm sorry for the tone of my previous post being negative/defeatist. I'm going to be honest, this whole issue has sent me into a tailspin. Since election night when the writing was on the wall that this is what we'd be up against my stress level has been through the roof. I...

Thanks for the uplifting story about your daughters J! You must be one amazing family. How cool that they are there advocating for us. Great list of those on the fence. It looks like Rob Portman (R) of Ohio is also undecided at this point. His Facebook post states that he needs to examine the...

Grrr Jeana you're correct. :/ My original post is old (from early March) and was in reference to a draft of the House bill. You are correct that this Senate bill would allow for the return of lifetime/annual caps by allowing states to "opt out". I live in a very red state that will opt out the...

Hi Shay, I get a new one every month with my Cayston so i'm afraid I don't have any advise on where to buy them for out-of-pocket for a decent price. I don't replace every month and keep a couple extra on hand. I'd be willing to drop one in the mail to you if that would help. It's of course...

Hi Jpear, I think your message is directed more at Heather, but wanted to say that I'm still around. :) Still doing pretty well at 36. I'm still PI on paper, but require few to no enzymes and am actually "pleasantly plump". My lung function is now in the 50s, but working more on exercising and...

And it has passed the house....

Only have a second but just read an article that states this plan will allow for the return of lifetime and annual caps. :( https://www.wsj.com/articles/little-noted-provision-of-gop-health-bill-could-alter-employer-plans-1493890203 So not only will we see the pre-existing conditions...

Hi again Love! Neither of the 2 centers I've been to use that protocol. When I was younger/healthier and bounced back much quicker we always did 2 weeks, regardless of whether I stayed in the hospital or did them at home. By 2 weeks I was always back up to, or above, baseline and we stopped...

So glad to see your other update that DS is feeling better and PFTs bounced back. PHEW!! I'm so happy for you guys. RE; the PICC removal, I concur with Penny, he shouldn't even feel it. However, he should try to stay relaxed so his muscles don't tense up or spasm. I did have a PICC line get...

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 Love! Sorry, obviously no input in your area, but wanted to chime in with a couple thoughts on what to ask. One thing that has made a pretty big difference in my experiences has been who they send out to your home as far as nurses. In Nebraska the home health companies I used always...

Glad you picked something, but ugh that they wouldn't sell it to you! What the heck? I'm trying to understand that logic, but oh well. Anyway, wanted to mention while it's not a gaming system, Maya enjoys playing Cookie Jam and Panda Pop on the iPad. If memory serves they were both free. As...

Awesome Joe! Thanks so much for the update. Sometimes we never hear and are left wondering. I'm so happy for you and your family! Take care, Autumn

It looks like, as of today, the White House is looking to bring about another health care bill. This time, the pre-existing condition clause is on the chopping block. From my very basic understanding, it would give states the right to "opt out" of parts of Obamacare, including covering...