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MOM of a 19 year daughter with Cystic Fibrosis

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Posted 11/19/2004 9:38 PM (GMT 0)
Hello all, I would love to chat with other partents of adult Cf'ers. I would love to chat about treatments that the adults are using. My daughter is 19 and has been very healty up to now. Her PFTs went from 95% to 57%. Is this normal for this age?


My e-mail is [email protected] I will love to hear from all.



Thanks Debbie

Post Edited By Moderator (Admin) : 4/12/2005 1:17:56 PM (GMT-6)

Posted 1/8/2005 7:02 AM (GMT 0)
CFMOM,
I'm not sure what the exact question is - there are many aspects of a PFT. There should be a 20% differance between her FEV1 and her FVC. My husband is a 28 year old CF pt that just received a 2 Lung transplant. The treatments he used when we first got married was based on a BID regamend of Colymycin (mixture), Albuteral (Intal), and Pumazine. He would occationally allow for CPT but they have a vest for that now. If you ask Respitory Theropist he/she would be better able to visit with you about it.
Hope this helped a little:)
Posted 3/18/2005 6:10 PM (GMT 0)
I am the mother of a 26 year old daughter with CF.  I am also a respiratory therapist.  Your question about decreasing PFT's is a good one and I ran into the same situation.  What I can tell you is that as they reach adulthood their predicted values on pfts make a big change and then don't change so often.  This may be what you are experiencing.  Also to consider is was your daughter sick at the time of that PFT.  My daughter's PFT's dropped 20 percent in the last year.  At first they dropped by 40% but she was sick.  After a round of IV antibiotics they came back up by 20% and that is where they have stayed so it is now considered to be her baseline.  Does that help any?
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