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I saw someone mentioned something about an e-flow. What is it and does it shorten the time for nebs? Faith does Albuterol for about 5-10 minutes, but TOBI takes anywhere from 30-40 minutes. That's just soooo long, especially in the morning trying to get ready for school. Thank you,

Faith lost some of her high frequency hearing because of being of the IV Tobramycin (don't get confused with the inhaled TOBI). I know hearing devices are not covered by insurance and I just wanted to see if anyone else out there has had this problem and what are you doing about it. I've...

My daughter doesn't need these anymore and I usually give our stuff to our CF clinic which I can do, but I thought about CF patients who don't have insurance. So if you don't have insurance and could use these, e-mail me and I'll see what I can do. The water she used with the hypertonic...

I have some vials of water and some vials of saline I would like to give to somebody who doesn't have insurance. We usually give our stuff to our CF clinic and I'll still do the same, but I know there are CF patients out there with little or no insurance. We used the water and saline for the...

I have some vials of water and some vials of saline I would like to give to somebody who doesn't have insurance. We usually give our stuff to our CF clinic and I'll still do the same, but I know there are CF patients out there with little or no insurance. We used the water and saline for the...

We're doing 3, sometimes 4, therapies a day. It is really best if she gets one during school. Does anybody else do it during school and who does it? Carol

We were just told the other day that Faith lost her high frequency hearing. Basically 1500 hz and above. Well that doesn't mean much to me. We just keep observing what she can't hear. So far we've notice the m/w and stove beeper, screaming on the TV, sometimes the phone, and last night the upper...

We were just told the other day that Faith lost her high frequency hearing. Basically 1500 hz and above. Well that doesn't mean much to me. We just keep observing what she can't hear. So far we've notice the m/w and stove beeper, screaming on the TV, sometimes the phone, and last night the...

I'm 11 1/2 years old and newly diagnosed. Since then, I have been in the hospital 7 times in 1 1/2 years. I've contracted a mycobacteria, c-diff bacteria,on 3 home IV's, ton's of meds and nebulizers. It seems like I'm never in school and I miss my friends.

Faith

I'm so frustrated!!!!!!!!! I have numerous pills, and too many nebs, and a germ that ruins a lot of things. I get nausea all the time. Somebody tell me something!!!!

Faith was diagonosed a year and a half ago at the age of 9. Yes, it was difficult to deal with in the beginning, but dealing with her CF ended up being ok, because she never showed signs of being sick. Once we found out what her problem was, it was being fixed. No more loose bowels, less...

My daughter complains of her stomache hurting quite frequently. They've up enzymes, changed enzymes, did a CT scan, tried Miralax (and others). They just can't seem to find anything wrong. Anybody else have these problems and what was your outcome. Oh and her stools are fairly loose. They...

Ok, I was a nervous nellie when Faith came home with a PICC line, but now she's coming home on Friday with a port in her chest. They put it on her sternum so we can do hand pt and she can do the vest. But it looks so vulnerable just sticking out like that. She still goes to school and has...

I have a strange one here!!! Faith knows that her 1 year anniversary is coming up this Friday on when she found out she has CF. She has marked it on the calendar and everything. It's not like she excited about it like she would be on her birthday or Christmas, but she does talk about it. She...

It's been a few months since I've been on-line. I wrote back in July of this year about my daughter's hospital visit and her findings on having this mycobacteria. I've just searched past messages about this bacteria. I would love to hear from other people who have it or dealing with a...

We have an opportunity to go to Disney at the end of the month (as long as Faith is able to go). Does anyone have any hints or suggestions on what to do. We'll be coming home with IV's and were told she can't get in the water, so no water park. I called Disney and they told me we can go to Guest...

We have an opportunity to go to Disney at the end of the month (as long as Faith is able to go). Does anyone have any hints or suggestions on what to do. We'll be coming home with IV's and were told she can't get in the water, so no water park. I called Disney and they told me we can go to...

My 10 year old daughter (just diagnosed in November) is in the hospital for the 3rd time since November. We thought it was going to be a routine tune-up, but after a week she became severely sick for the next 3 weeks. Ended up she received a Mycobacteria, strain Abcessus. Does anyone know...

My 10 yr old daughter (who was just diagnosed in November) is now hospitalized for the 3rd time since November. We thought it was going to be a routine tuneup. After the first week of being there she became very sick for the next 3 weeks. We now have a Mycobacteria and strain Absessus. We...