PFT Reliability

[JohnnaMarie]

Hello everyone:

This topic PFT's has annoyed me alot. There have been tons of doc visits I have gone to and I get my PFT's done and I come in feeling lousy....my lungs hurting...I'm tired..increased cough...you all know what I mean.....and magically the PFT's come back as good..."normal for me" Then the doctor acts like...oh you are fine because LOOK AT THESE PFT's...............

I think our docs should not rely on those numbers so much. They read them like they are more valuable than how we actually feel.

Well, that's my two cents......I just feel like no matter what sometimes the Doc's just dont listen to me.

 

[anonymous]

My son, who is 29 and has CF, has been experiencing a decline in his PFT's for a couple of years now and I am of course very concerned. He had a slight improvement on his last checkup and PFT after starting on TOBI every other month. But his FEV1 is still coming out under 30%, which is not good. He says he feels fine most of the time and he seems to have a good energy level and outwardly looks good. He even gained 5 pounds in the last 6 months. He has not had an obvious lung infection or productive cough since he started using Pulmozyme about 10 years ago and he has felt that it helped him tremendously. However, the PFT numbers are indicating otherwise. He doesn't do regular CPT or physical therapy, as he thinks the Pulmozyme keeps him cleared out but I think he still needs it. It's very frustrating to me because we were so careful that he had the best treatments possible when he was a child.

My question is: has anyone here ever "bounced back" and improved their PFT's significantly after undergoing IV therapy and/or intensive physical therapy? I have been searching for an article or something to show him that might encourage him to consider doing something besides what he is doing, if there is a chance it would help. He has always been very resistant to the idea of IV therapy but I know that he always coughed up more for the first few days he was on it. My hope is that it would help clear his lungs of mucus plugs that may have been building in his lungs for a long time and causing his obstruction. For now, I am encouraging him to resume his weight training and start working out on a regular basis because this has always been good for him in the past, to help keep him clear. I would appreciate any advice anyone could give me.