Never had a tune up
- Thread starter albino15
- Start date
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welshwitch
Guest
Me!
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welshwitch
Guest
108%.
My PFTs are usually over100% but my last on was ninety something (can't remember). That's probably due to my off and on compliance. I'm trying to get my stuff together and take care of myself. Hopefully I can get back up over 100%.
The highest I can remember them being in the past couple years, I think was 112%
The highest I can remember them being in the past couple years, I think was 112%
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marcijo
Guest
Me! Well-unless you count the time I was hospitalized when I was 7 months pregnant because I wasn't gaining weight (luckily I had extra to start with!). They kept me for a few days and then sent me home with TPN to take the last 2 months of my pregnancy.
My FEV1 is 87% at last check.
My FEV1 is 87% at last check.
What do you consider a "tune-up"? Based on this definition:
"A "tune-up" is a term used in the cystic fibrosis community to refer to a preventive course of intravenous antibiotics and respiratory therapy."
I have never had one. I've gotten really sick twice and needed IVs (once when I was 12 and the second was last year). I've needed orals because I was feel crappy or my cultures showed something. But I've never had IVs preventatively and my doctor has never said, "you need a tune up."
My FEV1 was 119% at my last visit...that was the highest it's been in years. Usually it's around 110-115%.
"A "tune-up" is a term used in the cystic fibrosis community to refer to a preventive course of intravenous antibiotics and respiratory therapy."
I have never had one. I've gotten really sick twice and needed IVs (once when I was 12 and the second was last year). I've needed orals because I was feel crappy or my cultures showed something. But I've never had IVs preventatively and my doctor has never said, "you need a tune up."
My FEV1 was 119% at my last visit...that was the highest it's been in years. Usually it's around 110-115%.
I get IV"s when things start to trend downwards as far as my condition goes, increased symptoms such as more coughing, increased temps, just feeling lousy before I get really sick.. I often call that a tune up because it is treatment that will bring me back to my baseline (hopefully) after it is completed. Like you Kristen, I have also been treated on an immediate basis, such as getting really high temps, or condition changing over the course of a day for the worst and I need intervention immediately.. I just experienced such an event with sepsis/massive pneumonia....there was no gradual decline, it was fast and furious.. nothing preventative about it, it was life threatening.. So I guess in a way, it would not be considered a tune up, but definitely an intervention to bring me back to as close to baseline as possible after getting rid of the initial threat.
Jenn 40 wCF
Jenn 40 wCF
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alegris
Guest
I haven't been on IV antibiotics since I was diagnosed at the age of 8. My FEV1 is in the high 60's. Not really sure why I've never had a tune up. I guess I haven't had any significant drops in lung function. Just a nice gentle decline instead! I've been on oral antibiotics (cipro) a few times which tends to clear up things nicely which is fine by me because I hate needles!
To answer the definition question: I just thought of it as getting to the point were you needed IV antibiotics, preventive or not.
Usually when people on here say "I'm going in for a tune up" it means they will be in the hospital for some length of time (even if it's just a few days to get things started) on IV antibiotics.
Usually when people on here say "I'm going in for a tune up" it means they will be in the hospital for some length of time (even if it's just a few days to get things started) on IV antibiotics.
JennyCoulon
New member
My oldest is almost 13 and he hasnt had a tune up yet either. Knock on wood we go a lot longer. Our middle child also hasnt had a tune up but he was given Iv antibotics about a year and a half ago for Pseudomonas but he was only in the hospital for 2 days and we did them at home. Knock on wood...
I am green with envy at those of you with such high pfts.
I had my first tune up about 18 years ago... outpatient IV's with every 3 day check in for blood work and/dressing changes.
I started "in hospital" tune ups a couple of years ago. I am likely looking at one this fall with another surgery.
Congrats to those of you who have been able to avoid frequent tune ups!!
I had my first tune up about 18 years ago... outpatient IV's with every 3 day check in for blood work and/dressing changes.
I started "in hospital" tune ups a couple of years ago. I am likely looking at one this fall with another surgery.
Congrats to those of you who have been able to avoid frequent tune ups!!
running4life
New member
I went 24 years without any IV antibiotics. Nurses thought I had just moved to the area because they had never seen me in the hospital before.
Right before my 25th birthday, was hospitalized for 3 days and sent home with 2 weeks of IVs. Not the worst experience of my life...was easier than I thought. Lung function has always been in the 90 percentile. Dropped to 57% before I was hospitalized. Back up in the 80s a few months ago. Will see where I am now in a few days.
Right before my 25th birthday, was hospitalized for 3 days and sent home with 2 weeks of IVs. Not the worst experience of my life...was easier than I thought. Lung function has always been in the 90 percentile. Dropped to 57% before I was hospitalized. Back up in the 80s a few months ago. Will see where I am now in a few days.
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eternaloptimist86
Guest
I have never been in for a tune up either. FEV 1 has been stable in the low 90's since I started doing PFTs.. I am now 26 
rubyroselee
New member
::raises hand:: Never been on IVs yet - hope I can put that off for awhile. My PFT's are in the 80's.