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I have been at an in-pass with my health since November, actually three days after I was undiagnosed with CF via Nasal PD, I ended up intubated and sick. I have not recovered and it has been a nightmare to say the least, The doctor I saw today at my regular hospital wants me to go to Jewish...

I was wondering for anyone who uses Bi-pap... I am using it every night and I have not had any problem ever before this morning. I woke up this morning and my stomach was totally distended, It feels like I ate the O2 last night instead of breathing it. But I would have thought by now 12 hours...

I was wondering why I had to keep getting my tanks filled from my home O2 company because I know others have at home fill tanks. They told me I cant use that because my order is for 4-6 liters continually. Does anyone know if they have an at home fill system that has a continuous flow to it...

I am dying for an update on how things went with Jazzy, how her Christmas was etc... Come on girl don't leave me in suspense

I have been really hesistant to post on here a question but I don't know where else to ask. I had a pretty big set back on Thanksgiving that lead to me being intubated. I am now home but I am on oxygen. 2-4 liters. I went for my follow up and I was told that I need to stay on the o2 until...

I was intubated and then flown to USC on Thanksgiving. I was extubated a few o2 days later and am now in a regular room, for the first few days after being extubated I had to go on helium oxygen to help keep my sats up, At rest with a full mask on they can keep my sats at around 94, but as...

I know I don't have CF, just reminding you, for those who are not up to date, I recently this past Thanksgiving was intubated for an asthma attack which lead to a ton of larynegeal spasms and vocal chord disfuctions. After they took the tube out, they put me on something called Heliox, it is a...

Hey I have been wanting to and wanting to report back to you more detailed information about how things have unrolled for me. I did this on CF2Chat and was actually accussed by Tara and a few other ppl as being a faker, at first that ripped my heart out. I cried, offered to send medical...

So I am processing, thinking, sleeping, talking processing through this whole nasal PD test. I have received several emails from you guys talking about how a cold and swollen nose can cause false negative results. The doctor who did my test said that my nose is so swollen he didn't know where...

So where else to go when you freak out??? LOL actually I should say, cry out loud, because that is what I am doing. I don't know where all this emotion is coming from. I totally know that the nasal PD is going to be negative tomorrow.. I just know it. I don't even have a question of a doubt...

All day I have been thinking of you and hoping you got your answers.. I don't know what time zone you live in but here it is almost 5 o'clock and I am assuming you have some answers. I hope you are okay either way and no we love you!!!

Well I just found out they can do my Nasal PD this Friday so I will headed to Chapel Hill this Thursday night and sleep over in their Ronald McDonald house. IF anyone wants to meet me for dinner just let me know... Since a Dr Donaldson is doing the test himself I should have the preliminary...

I am both excited and nervous and sort of like who gives a crap all at once but I am going to UNC next Thursday for a consult on my DF508/Q1330E mutations or mutation or whatever it means. I am so hoping for answers. The team seems really nice there. I love my team at MUSC, just Dr Flume...

Hey this is without a doubt my least favorite topic in the whole wide world but I need to get some info. I was on enzymes when I was first dx with CF (Pancrease MT 20) I was on those for years but also pretty overweight from eating a ton from the prednisone I was on and poor choices. WHen I...

To Clear up about SSDI and working I have heard so many people say that if you are collecting SSDI that you can not work at all. That is not true. Just so you know, you can work and make up to 1000.00 a month that is before taxes. You can not go one penny over that or you can lose your...

I will be getting medicare effective as of August 2011. I am also applying for medicaid as a working disabled. I think I miss the cut off for being approved for medicaid by $26.00 a month.. UGGG Does anyone have just plain medicare? Do you find it meets your insurance needs okay? I am going to...

I will be getting Medicare in about six months, that will mark me at being 'disabled" for 24 months which qualifys me for Medicare. I have no idea how it works, do you have copays when you go to the doctors? I will not have any other insurance. How does presciptions work? Do you buy a...

Hey Guys, I was finally approved for SSDI.. Thank you GOD!!! I have no other details except that I was approved, it went in as an emergency appeal because I was about to lose my health insurance. It took just a few short days to get approved after being denied twice over a year or mores time...

See you there, not sure how long I am staying though... Tough day

OKay I know I have not posted on here in a while and now all of a sudden I am posting crazy questions.. The only thing I can find about this crazy other gene (Q1330E) is that it is a dysfuntion of the Nucleotide Binding Domain 2, I see lots of common CF genes that are in the NBD1, but all the...