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silkmilk1
New Member


Date Joined Jul 2007
Total Posts : 4
   Posted 7/19/2007 6:11 PM (GMT -7)   
i need to talk to some one with cf because i'm researching cf.
here are the thing i need to know ok? here they are
 
how many pills do you take a day for cf?
do you use an oxygen tank?
do does some one have to hang you up side down to pat the phlegm out?
 
these question may seem silly but some of my friends think someone is faking to have cf.
and it's a very sirus to fake illness

NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 7/19/2007 8:45 PM (GMT -7)   
well silk, those are some very interesting questions...
 
I take about 45 pills a day
I do not use an oxygen tank (though for some cfer's it is necessary)
and I can't speak for everyone, but I have never been hung upside down to get the mucus out (that would be quite the experience though)
Em!!!
 
Ta ta for now!
 
"In solitude the mind gains strength and learns to depend on itself"


 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/20/2007 4:05 AM (GMT -7)   
With tablets it ranges anywhere between 50 and 100, depending on how much I've eaten, as it varies greatly with my Creon 10,000 Enzymes.

I also don't have oxygen, as even when my lung function is down and I'm struggling to breathe my saturated oxygen levels are still at 100%. Most of my friends with CF do have to have Oxygen though.

I guess you mean tipping on a wedge, with percussion to help release mucus from the tght spots?
As far as I'm aware that technique isn't in use anymore. People either use the Active Breathing Cycle (ABC), which can be done sat up, or layed flat, or ABC with Percussion. Also layed flat or at up, and not at an angle.

I personally use a device called the Pari PEP. It can't be used on it's own, or with a manometer to make sure you're blowing te correct pressure. It can also be used with a Pari Nebuliser, so you can nebulise either regular Saline (0.9%) or Hypertonic Saline (7% I think) at the same time.
I find this technique is the most effctive for me. I also throw in a little of the ABC and a huff, as it's even more effective for clearing out the lungs.


Co-moderator in the: Cystic Fibrosis Forums
 Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
Had a Port-a-cath fitted on chest wall since 11th Nov 05

Post Edited (Darkies Gem) : 7/20/2007 5:22:41 AM (GMT-6)


silkmilk1
New Member


Date Joined Jul 2007
Total Posts : 4
   Posted 7/20/2007 8:26 AM (GMT -7)   
Thank you so very much. You guys are big help!

nike_j
New Member


Date Joined Jul 2007
Total Posts : 6
   Posted 7/20/2007 8:55 AM (GMT -7)   
i take about 56 pills a day but it use to be like 90 again depending on how much i eat
ive tried comming off as many meds as possible with the help of my doctor cause my kidneys arent lilking it so much eyes

LittleBird
Regular Member


Date Joined Nov 2005
Total Posts : 36
   Posted 8/1/2007 10:40 PM (GMT -7)   

I am on 20 different medications when I am healthy, some are inhailed, though most are pills. it is difficlut to tell exactly how many pills I take each day because I take 3-6 with everything I eat. I eat a LOT, so they add up quickly.

as for the oxygen, yes, I use oxygen at night, and when I start getting sick I need it all the time.

the airway clearance you are talking about is an old fasioned treatment, I have done it in the past, however I do more modern treatments now. there are many different air way clearance treatments, some work better for differnt people. personaly I use IPV. though I do have very clear memories of hanging over my mothers knees while she beat on my back and chest.

I hope I was able to help!

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