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I have been contemplating asking this for a long time now. When i do my albuterol inhaler i have to inhale and then hold my breath for as long as i can. Sometimes i can hold it longer than others and have been able to almost guage how well my lungs are doing by how long i can hold my breath. I...

i read a long time ago about someone using tobi for their sinus infections. What i cant remember is how they said they did it? Did they just squirt it from the vial up their nose? or dilute it ? I have been considering using it depending on its ease of use, but have no recollection of how it was...

I just got this email from my dietitician ......................................................................................................... Diane: I just learned that the CF Center at Hahnemann is staying open. I hope you will stay with us. She told me another doctor is taking over for...

Have i read somewhere that we need extra Magnesium? I was sure i saw that somewhere, and wondered if anyone here takes it ?

Today's my 41st birthday , hope to see 41 more....well maybe if all goes right. My mom called me this morning and sang Happy Birthday to me on my answering machine <img src="i/expressions/face-icon-small-happy.gif" border="0"> what a nice wake up call <img...

Hi jenn, i was wondering how you are feeling? How is your friend John doing? I hope things are improving for both of you <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

I went for my checkuop yesterday and when i got there, they had me go into the room with the big machine with the tubes to do my pft's. Normally i use the handheld one ( i guess because i have b.cepacia) Well anyway i asked right away why im using this one when i never usually do since i have...

Is there a Joe Campbel on this site who lives or still lives in Indianna?

Has anyone with b.cepacia tried hypertonic saline? I know there were trials on people without b.cepacia and it worked well for them, which is all well and great <img src="i/expressions/face-icon-small-smile.gif" border="0"> But i am curious if anyone with cepcia has used it, or currently uses...

In Phila. the mayor has set up a survey online for people who cannot get to vote on this subject in person about baning smoking in public places. The link is........ http://www.phila.gov/onlinesmoking.html Please take the survey and help...

A while back in January i wrote about trying L-Lysine to treat my hemoptysis problems. I had read about a woman who tried it on her teenage son who had problems with coughing up blood and got in touch with her about it and decded to give it a try. She suggested 3000 - 4000 mg per day ( spaced...

I am curious about something to do with Sudafed. Years ago before and for a few years after my sinus surgery, I used to take Sudfed once a day to help with the stuffiness. I remember my ENT saying it was safe to take this every single day. Well year or two ago i stopped using the Sudafed, and...

My 40 th Birthday<img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"> ~Diane 40 / cf / diabetes...

I was hospitalized recently for hemoptysis ( not a large amount thank God) and decided to give one more thing a try that i had read about on the gsh board. Its called L-Lysine . I read about a woman whos son has cf and had hemoptysis problems and he started taking it and he doesnt have problems...

I dont lay flat anymore after having my 2 embolizations ( 2 years ago), and i had a nightmare of a time coping with the fear of it all happening again. It took almost the whole 2 years till i started feeling comfortable in my own skin again, and the other night last week i was sound asleep, and...

Recently i bought a book called " Childrens hospital" . I figured it had to have something in there about cf. Well it was about Childrens Hospital in Philadelphia ( where im from), and had a few characters with different ailments. The main character was a 15 year old boy with cf. The characters...

I went for my doctor visit today and i said in an earlier post (about glutathione )that i would post how it went. and here are my last three doctor visits results february 2004......... fev1 - 43 %.....fcv - 64% 113 pounds may 2004................fev1 - 44%........fvc - 65% 115 pounds...

Gosh i know this is a long shot, but is there anyone out there who has b.cepacia who is doing really well? There has to be someone out there who is beating the odds or at least keeping up with it. Actually i am curious how ANYONE with b.cepacia is doing. How long have you had it, how is your...

Hello, my doctor perscribed " Advair" for me today at my visit. I explained to him that when i exercise especially walking on the treadmill , i can walk very fast and hardly cough at all, but once i am finished and sit down to relax, i cough like crazy. Same thing when i do any kind of...

A few days ago my mom called to tell me that, she sawon the news about a new asthma treatment that helps with getting rid of mucus and may also benefit cf patients. The next day she saw where they were talking about a new antibiotic that gets rid of infections that others cant. I myself hardly...