Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Annie, Healthy people, like yourself probably have a 100% FEV1. Means you are using 100% of your lungs. I am not sure how old BJ is, but most CF doctors know that when a CF patient gets to about 35 - 32% FEV1, lung transplant needs to be discussed. Do you know what BJ's FEV1 is at this point? Joanne > Can someone tell me what a normal FEV level would be > and when should you be concerned? > > Annie, Mom to B.J. > Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Sheila, I don't know if there is a standard % an FEV1 drops during infection and if there is a certain % droppage that would alarm a doctor. I think this is a good question for the CF team. Nebulized meds are great. Often they really give our lungs a shot of drugs we need to hit them directly. I know when my PFT's started to fall it was gradual. I would hang out at 40% for a couple of years. I think once I hit about 30% they were dropping faster as infection was more prevalent and easier to acquire. Ask the doctors though, I am unsure of this. Joanne > Subj: RE: FEV Level > Date: 10/30/2002 1:41:43 PM Eastern Standard Time > From: Sheila.Munden@...Sheila.Munden@... > Reply-to: cfparents cfparents > To: cfparents cfparents > Sent from the Internet > > > > > > Hi > > How much can a FEV1% fall when there is an infection present. > > s FEV1% was only 57% (his sputum showed both Staph and PA) - he's > taking cipro and another antibiotic (can't remember name right now). And > s doctor wants to talk about nebulised antibiotics when we go for > check up on 7th November. I was just wondering how hopeful should I be > that > his FEV1 will increase and by what sort of%. On the other hand he is very > well now running around without getting out of breath it's hard to believe > he is only using just over 1/2 of his lung capacity. As he has only > recently been diagnosed how much has technique got to do with the lung > function result??? > > This FEV1 result is really freaking me out at the moment. > > Any info would be appreciately > > Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Hi How much can a FEV1% fall when there is an infection present. s FEV1% was only 57% (his sputum showed both Staph and PA) - he's taking cipro and another antibiotic (can't remember name right now). And s doctor wants to talk about nebulised antibiotics when we go for check up on 7th November. I was just wondering how hopeful should I be that his FEV1 will increase and by what sort of%. On the other hand he is very well now running around without getting out of breath it's hard to believe he is only using just over 1/2 of his lung capacity. As he has only recently been diagnosed how much has technique got to do with the lung function result??? This FEV1 result is really freaking me out at the moment. Any info would be appreciately The information contained in this e-mail is intended for the recipient or entity to whom it is addressed. It may contain confidential information that is exempt from disclosure by law and if you are not the intended recipient, you must not copy, distribute or take any act in reliance on it. If you have received this e-mail in error, please notify the sender immediately and delete from your system. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Sheila, As a kid it is hard to accept that you must do this. After all their friends are not. You want to be like them. But yes it is so important. I know I rebelled in my teen years. I had no cough, felt I did not need this, and the stupid doctor ( I say stupid as that is what I thought. I love the man now) would insist we do it even if I had no cough. CRAZY I thought. But the more you keep stuff out, less buildup and less infection, less damage and more likely you won;t need a transplant and stay health longer. Good luck joanne > > Thanks Joanne > > I feel much better today thanks to you and the others. > > I know that nebulised drugs will help a lot - but am not looking > forward to the fight I'm going to have with him - He's fed up enough > already > with the time he has to spend on CPT - he let's me do it but very > begrudgingly and very very noisily (The neighbours must think I'm beating > him!!). I suppose we just have to keep stressing how important all his > treatments are to him? After all he's had an awful lot to take in these > last two months. > > Thanks to everyone on the list - or should I say Roller Coaster. > > Take care &hope things are going okay today. > > > Sheila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Sheila, As a kid it is hard to accept that you must do this. After all their friends are not. You want to be like them. But yes it is so important. I know I rebelled in my teen years. I had no cough, felt I did not need this, and the stupid doctor ( I say stupid as that is what I thought. I love the man now) would insist we do it even if I had no cough. CRAZY I thought. But the more you keep stuff out, less buildup and less infection, less damage and more likely you won;t need a transplant and stay health longer. Good luck joanne > > Thanks Joanne > > I feel much better today thanks to you and the others. > > I know that nebulised drugs will help a lot - but am not looking > forward to the fight I'm going to have with him - He's fed up enough > already > with the time he has to spend on CPT - he let's me do it but very > begrudgingly and very very noisily (The neighbours must think I'm beating > him!!). I suppose we just have to keep stressing how important all his > treatments are to him? After all he's had an awful lot to take in these > last two months. > > Thanks to everyone on the list - or should I say Roller Coaster. > > Take care &hope things are going okay today. > > > Sheila > Quote Link to comment Share on other sites More sharing options...
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