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I gave my testimony last week in church. Some of you wanted to watch it on the internet and were unable to. I would like to send a DVD copy free of charge to anyone who would like one. Though I was raised Catholic, my testimony comes from a more non-denominational perspective and really just my...

I am the queen of odd and silly questions lately. There was a post a while back about this spice. Is this something you can buy at the grocery store? Is there a best way to buy it, ex. fresh or dry? I'd like to start using it in some of my cooking. Of course, with almost no sense of smell, that...

OK, one of the other posts reminded of this very annoying thing. I HATE IT! when people who know I have CF ask me how I am feeling and then look at me and say "well you look good". I know they mean well but this is what it sounds like to me: "the first thing I think of when I see you is that you...

I am trying to find reasons to step up my exercise routine. I know that exercise is GREAT for CF and keeps us nice and open. This may be a dumb question, but does exercise actually help us fight infection? For example, if I am in the beginning stages of an exacerbation and I choose to step up...

I am getting ready to start inhaled Aztreanam as part of the EAP. The center I go to is telling me I can not use the e-flow with Tobi or Pulmozyme because of FDA approval on it. I know that some of you on here are using it for those meds. How are you doing it?? I know some of you have the Tobi...

I am considering applying for SSDI as our medical bills are "eating us out of house and home" and we are the lucky ones with a good income and insurance. It is just that when CF gets more complicated it gets a LOT LOT more expensive. Anyways, I am learning that you qualify for Medicare after 24...

After spending the day at the CF Clinic, ughh! I got comfy in my car and was driving home. I know this is gross; but, I've seen worse on here. I coughed up a couple of tbsp. of blood with globs of mucous. I was non-productive there for a while during this exacerbation and have been on steroids...

Somehow my blog posted 2x. There is not a bottom line on it for me to delete or edit either one of them and they don't show up when I go into admin. where you can normally delete a blog. Help!!! So I can make room for you all. So sorry!! This is what I posted and need help on: Ughhh! My heart...

I have been on IV Zosyn for a little over a week and I just did my PFT's again today with no change! Suck!!!!!! I feel fine, not SOB, no fever. I expected at least a little change. It is sooooo hard to work soooooo hard and see no improvement. I am PMSing, so maybe that makes a difference. Plus...

My compressor crapped out on me. Against my request, they sent me an inspiration elite. Has anyone ever used this one? I have always used Pari and kind of thought that was the brand of choice for CFers. Is that right? Is it also true that we have to use the LCPlus nebulizer for Pulmozyme and...

Hi all, I am starting IV antibiotics next week. We have decided on zosyn and oral bactrim. He does not want to do any mycin drugs d/t ototoxicity. I would like any opinions on Zosyn as I have never been on it before. What to watch out for as far as side effects? Also, has anyone else done this...

For those of you who are participating in the EAP for Aztreanam Lysine, what do you cycle with it? I know it is 4 weeks on then 4 weeks off. Do you do inhaled Tobi during those 4 weeks off? or do you just do an antibiotic by mouth and stop Tobi altogether? Also, we were thinking of doing a...

I am 38 and had a sweat test in 1970. Needless to say, those results are long gone. I know it seems kind of strange to have to get a diagnosis after all of these years but I need to have two done to participate in the Aztreanam expanded access program. Insurance may not cover it because I am...

I am 38 and had a sweat test in 1970. Needless to say, those results are long gone. I know it seems kind of strange to have to get a diagnosis after all of these years but I need to have two done to participate in the Aztreanam expanded access program. Insurance may not cover it because I am...

I know you all are probably wondering why this is in the adult section. I am 38 and had a sweat test in 1970. I need to have two done to participate in the Aztreanam expanded access program. Insurance may not cover it because I am already being treated for CF. I just want to have an idea of what...

My pediatric pulmonologist has a good friend coming in town at the end of Jan. He is a specialist in self-hypnosis. He helps kids "relax" to have bloodwork drawn and various other things. Anyway, I told him I needed that to do PFT's and I the opportunity to visit with him if I decide to. I can...

I am curious how you all feel about tune-ups. I am kind of new to the IV antibiotic world. I have only had them 2x. I know some centers recommend tune-ups on a regular basis regardless of numbers. I am at a relatively low FEV1 but stable and feeling good. It has been about 6 months since I was...

To those of you who know anything about the expanded access program, I have a few questions. When you look on the government site for clinical trial contacts, there are only a few cities to choose from. The closest one for me is about a 7 hour drive. Do you have to go to that center or contact...

I am looking for advice. I am a 39 yo CFer. I have 4 siblings, all of which do not have CF. Both of my sisters have young children. My younger sister has a 6 yo who I worry about. He is very underweight and seems to get sick often in the winter. When he was about 2, her pediatrician wanted them...

OK, so nobody post anything that will freak me out anymore than I already was today. Just laugh at me and move on or feel free to post something funny. What a day. My poor daughter, who has pneumonia, broke the mercury thermometer. We had to call hazmat, poison control, and finally 3 big...