How often do you do a tuneup?

[Jeana]

I haven't had a tuneup in two years, although I have been gradually declining.  But I used to do one every two years.  Should I just do one when I am sick or is there a regular increment that most get tuneups in?

 

[Jeana]

I haven't had a tuneup in two years, although I have been gradually declining. But I used to do one every two years. Should I just do one when I am sick or is there a regular increment that most get tuneups in?

 

[Jeana]

<p>I haven't had a tuneup in two years, although I have been gradually declining. But I used to do one every two years. Should I just do one when I am sick or is there a regular increment that most get tuneups in?

 

[Kristen]

I didn't respond to the poll because I've never had a tuneup before because my PFTs are always good (FEV1 = 110%). But I wanted to mention that may be changing - I just finished my first round of IVs, (due to bronchitis), in 22 years and they made me feel a lot better from my baseline, even though my PFTs didn't change from baseline. So I asked the doctor what he thought about tune-ups for me, and he said it could be something we do once a year. I just depends on how long I keep feeling good after this round of IVs - if my cough comes back in a few weeks, I don't think it's worth it, but if it stays away for months and months, we'll probably start doing them.

 

[Kristen]

I didn't respond to the poll because I've never had a tuneup before because my PFTs are always good (FEV1 = 110%). But I wanted to mention that may be changing - I just finished my first round of IVs, (due to bronchitis), in 22 years and they made me feel a lot better from my baseline, even though my PFTs didn't change from baseline. So I asked the doctor what he thought about tune-ups for me, and he said it could be something we do once a year. I just depends on how long I keep feeling good after this round of IVs - if my cough comes back in a few weeks, I don't think it's worth it, but if it stays away for months and months, we'll probably start doing them.

 

[Kristen]

I didn't respond to the poll because I've never had a tuneup before because my PFTs are always good (FEV1 = 110%). But I wanted to mention that may be changing - I just finished my first round of IVs, (due to bronchitis), in 22 years and they made me feel a lot better from my baseline, even though my PFTs didn't change from baseline. So I asked the doctor what he thought about tune-ups for me, and he said it could be something we do once a year. I just depends on how long I keep feeling good after this round of IVs - if my cough comes back in a few weeks, I don't think it's worth it, but if it stays away for months and months, we'll probably start doing them.

 

[LouLou]

I go on IVs everytime I am symptomatic in a way different from my baseline. I've created a checklist of things I experience when I am exacerbating to help me 'see the wood from the trees' since I tend to try to think positively and forget the true facts. When I have more than a few items checked off on my list,  I call or email my dr to discuss.
I don't know what my drop in FEV1 is from these exacerbations because I don't go in to start the IVs. I go in 2 weeks later to review if I am all better or if I need more meds. Since contracting MRSA in 2007 around a year later I began needing IVs every 3-4 months before October when I started open label for the study I'm in. I was averaging every 8-12 wks needing a course. It's important to note that I am unable to treat all my bugs with oral antibiotics anymore. I wouldn't be using IVs if I still had oral options. Since this fall I am back to every 3-4 months needing IVs.

 

[LouLou]

I go on IVs everytime I am symptomatic in a way different from my baseline. I've created a checklist of things I experience when I am exacerbating to help me 'see the wood from the trees' since I tend to try to think positively and forget the true facts. When I have more than a few items checked off on my list, I call or email my dr to discuss.
I don't know what my drop in FEV1 is from these exacerbations because I don't go in to start the IVs. I go in 2 weeks later to review if I am all better or if I need more meds. Since contracting MRSA in 2007 around a year later I began needing IVs every 3-4 months before October when I started open label for the study I'm in. I was averaging every 8-12 wks needing a course. It's important to note that I am unable to treat all my bugs with oral antibiotics anymore. I wouldn't be using IVs if I still had oral options. Since this fall I am back to every 3-4 months needing IVs.

 

[LouLou]

<p>I go on IVs everytime I am symptomatic in a way different from my baseline. I've created a checklist of things I experience when I am exacerbating to help me 'see the wood from the trees' since I tend to try to think positively and forget the true facts. When I have more than a few items checked off on my list, I call or email my dr to discuss.
<p>I don't know what my drop in FEV1 is from these exacerbations because I don't go in to start the IVs. I go in 2 weeks later to review if I am all better or if I need more meds. Since contracting MRSA in 2007 around a year later I began needing IVs every 3-4 months before October when I started open label for the study I'm in. I was averaging every 8-12 wks needing a course. It's important to note that I am unable to treat all my bugs with oral antibiotics anymore. I wouldn't be using IVs if I still had oral options. Since this fall I am back to every 3-4 months needing IVs.

 

[LouLou]

With this agressive treatment plan I have not lost any lung function.


I maintained 67% FEV1 since '05 (of course with blips here & there) and now have seen a 10% increase since going open label. Having a port has made pulling the trigger on starting IVs very easy. Perhaps too easy but time will tell. My dr and I feel it's only a matter of time before I have (and do!) therapies that severely alter the course of my cf so we take this agressive approach. Another upshot is that it certainly makes qualifying for SSDI easy though I qualified before I was doing IVs regularly (as in 3 times in my life!)

 

[LouLou]

With this agressive treatment plan I have not lost any lung function.


I maintained 67% FEV1 since '05 (of course with blips here & there) and now have seen a 10% increase since going open label. Having a port has made pulling the trigger on starting IVs very easy. Perhaps too easy but time will tell. My dr and I feel it's only a matter of time before I have (and do!) therapies that severely alter the course of my cf so we take this agressive approach. Another upshot is that it certainly makes qualifying for SSDI easy though I qualified before I was doing IVs regularly (as in 3 times in my life!)

 

[LouLou]

With this agressive treatment plan I have not lost any lung function.
<br />
<br />
<br /> I maintained 67% FEV1 since '05 (of course with blips here & there) and now have seen a 10% increase since going open label. Having a port has made pulling the trigger on starting IVs very easy. Perhaps too easy but time will tell. My dr and I feel it's only a matter of time before I have (and do!) therapies that severely alter the course of my cf so we take this agressive approach. Another upshot is that it certainly makes qualifying for SSDI easy though I qualified before I was doing IVs regularly (as in 3 times in my life!)

 

[MikeInMT]

My pft's are right at 30% so I get tune up about every month and a half- 2 months, usually when pneumonia sets in :/

 

[MikeInMT]

My pft's are right at 30% so I get tune up about every month and a half- 2 months, usually when pneumonia sets in :/

 

[MikeInMT]

My pft's are right at 30% so I get tune up about every month and a half- 2 months, usually when pneumonia sets in :/