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Amen. I swear by the Waterpik as well! It gets so much further up than any of the other methods it's crazy. Salty, the attachment I have is only compatible with a couple certain Waterpik models, so if you go buy one I'd buy the "Classic", that's the one I've always had. Recently when my...

Hi Jabug, Sorry you are still in limbo. Hope you're hanging in there! 32 analytical means they are only testing her for the 32 most common mutations. There are over 2,000 known mutations. I think it's pretty common to start with the 32 panel because it's a lot cheaper. I wish though given...

Just for clarification because this is a confusing subject; Medicare is a federal program, so it is the same in every state. Medicare is for people over 65 OR disabled individuals on Social Security Disability. So I am 34 and on Medicare. Medicare is not income based, so a person over 65, or...

That's awesome John! Here is a link to her post last month looking for a vest system: http://forum.cysticfibrosis.com/threads/118337-In-need-of-vest-Any-one-interested-in-selling-or-donating-their-vest?highlight=sweetninis You could try replying there, or also her facebook link is listed on...

Hi John, There is a member here who has been looking for a vest for her 3 year old little girl. They live in Pakistan and the Vest is not available there or covered by insurance. I'm not sure what her budget is, or how shipping it would work, but wanted to mention it because it pulls on my...

Hey Friend! Sorry to hear you're feeling lousy. :( I can imagine how scary and overwhelming this must be needing your first PICC line at 35. Hoping I can add some words to ease your mind a bit as others have done. :) First things first, if you are feeling nervous, do NOT hesitate to ask...

Hi Anna, and welcome!! So sorry you are dealing with this. :( One of the most frustrating aspects of CF for me is when my insurance tries to dictate what medicine (and how much) I get. Ugh. The 2 appeals I've done, I lost. One was over the dosage of Serevent. The recommended dose (based...

Thanks Ethan, you're correct. I apologize for any confusion I caused with that quote, as I was really focused on the latter part of his comment, rather than the comments about diabetes. I thought he made some really great points with: "it is impossible to thrive with CF unless you put in hours...

Hi Randford! I'm really glad I could make your day!! :) If you go to cysticfibrosis.com's facebook page it is the first post on the page, dated January 28th. It has a link to this thread. There are now over 1K likes, 277 comments, and 288 shares. :) Autumn 34 w/cf

My ENT also does "mini cleanouts' in his office with lidocaine spray. Not to be too gross, but I was always amazed at the amount of crap that he got out. YUCK. Also wanted to mention regarding the tobramycin, it was a prescription given to me by the ENT. It was in glass vials that I drew up...

Thanks so much for the info! Good to know there are choices. :)

Hi SaltyOne, Sorry your dang sinuses give you so much trouble. :( I have a couple ideas... What do you currently use for sinus rinses? I ask because I use a Waterpik (yes, the water flossers for teeth) with a special attachment that my ENT gives to patients. It has a lot of pressure and...

Hi Jabug, So sorry for the position you are in, but you are doing an amazing job of advocating for your daughter!! I agree with everything Love has said. I am personally shocked that a sweat test over 60 in a child who is symptomatic is not at the VERY least enough for them to order the...

Hi Jamest! I read it on the CF Roundtable's facebook page. I'm glad you've had good luck with CF Services. I've had nothing but problems getting them to correctly bill my patient assistance programs. Yes, I believe Foundation Care offers the same services regarding the manufacturer programs...

Thanks for that info. Believing!! That explains why we have heard nothing on their decision. Now there's nothing we can do but await their decision as far as that goes. As you said, if they do accept the changes, CFers will have to be very, very sick to qualify. It's disgusting really...

Hi Ethan! Sorry if I was confusing, but when you qualify for SSDI, you DO automatically qualify for Medicare. They are tied together. What I was saying is that there is a 24 month waiting period before the Medicare benefit begins. So after one starts receiving Social Security, it won't be...

Randford, I'd like to clarify that I am behind these efforts 100 percent. I, and many others in the CF communtiy took action to try to stop the changes the SSA proposed almost 2 years ago to make getting SSDI even more difficult than it currently is. I have yet to hear if these changes were...

Wow, Randford, have you checked out the cysticfibrosis.com Facebook post about this thread? People are coming out of the woodwork. There are currently 749 likes, 162 comments, and 204 shares! Maybe you should not be discouraged. People ARE interested in this, and the vast majority are...

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...

I'm always curious about organization as well. You'd think after 34 years I'd have come up with something better for my vest and compressor. I'd definitely buy a special shelf/cart if it looks like it would work. I'm always looking at Target/Bed Bath and Beyond etc, for a cart that could...