TOBI

point · Oct 25, 2008

On the Novartis website it states the TOBI should be taken with a particular Pari Neb cup and certain type of air compressor.

My traveling pari air compressor is currently not putting out the right air amount - it was checked by my respiratory therapist this week. I was told to start TOBI this week for the first time ever, and am concerned about starting it with a shotty air compressor. I emailed both my respiratory tech and my nurse this past Wed and have not heard back from them. I have decided to hold off on starting TOBI until I know whether or not my compressor is really okay. I am not concerned about using my air compressor for my saline b/c the dosage of that is less of an issue, but starting a drug.... I don't want to start something that isn't even effectively delivering the right dose.

Background: My pft's have gone down 10% in one year - - I am usually at around 106% for FEV1 and I was at 95% this past Monday at my appt. Nevermind the fact that I was at smokey bars the Thurs and Friday before (not my usual scene), and my husband is in the middle of destroying our main bathroom (lots of dust around). We have a new doctor that I saw for the first time, and he is more proactive. They also said that they have changed to a more active approach for even the 'healthier' patients in clinic.

Any thoughts/ experience with TOBI and specific air compressors (or air compressor requirements)?

Thanks for your thoughts.....

point · Oct 25, 2008

On the Novartis website it states the TOBI should be taken with a particular Pari Neb cup and certain type of air compressor.

My traveling pari air compressor is currently not putting out the right air amount - it was checked by my respiratory therapist this week. I was told to start TOBI this week for the first time ever, and am concerned about starting it with a shotty air compressor. I emailed both my respiratory tech and my nurse this past Wed and have not heard back from them. I have decided to hold off on starting TOBI until I know whether or not my compressor is really okay. I am not concerned about using my air compressor for my saline b/c the dosage of that is less of an issue, but starting a drug.... I don't want to start something that isn't even effectively delivering the right dose.

Background: My pft's have gone down 10% in one year - - I am usually at around 106% for FEV1 and I was at 95% this past Monday at my appt. Nevermind the fact that I was at smokey bars the Thurs and Friday before (not my usual scene), and my husband is in the middle of destroying our main bathroom (lots of dust around). We have a new doctor that I saw for the first time, and he is more proactive. They also said that they have changed to a more active approach for even the 'healthier' patients in clinic.

Any thoughts/ experience with TOBI and specific air compressors (or air compressor requirements)?

Thanks for your thoughts.....

point · Oct 25, 2008

On the Novartis website it states the TOBI should be taken with a particular Pari Neb cup and certain type of air compressor.

My traveling pari air compressor is currently not putting out the right air amount - it was checked by my respiratory therapist this week. I was told to start TOBI this week for the first time ever, and am concerned about starting it with a shotty air compressor. I emailed both my respiratory tech and my nurse this past Wed and have not heard back from them. I have decided to hold off on starting TOBI until I know whether or not my compressor is really okay. I am not concerned about using my air compressor for my saline b/c the dosage of that is less of an issue, but starting a drug.... I don't want to start something that isn't even effectively delivering the right dose.

Background: My pft's have gone down 10% in one year - - I am usually at around 106% for FEV1 and I was at 95% this past Monday at my appt. Nevermind the fact that I was at smokey bars the Thurs and Friday before (not my usual scene), and my husband is in the middle of destroying our main bathroom (lots of dust around). We have a new doctor that I saw for the first time, and he is more proactive. They also said that they have changed to a more active approach for even the 'healthier' patients in clinic.

Any thoughts/ experience with TOBI and specific air compressors (or air compressor requirements)?

Thanks for your thoughts.....

point · Oct 25, 2008

On the Novartis website it states the TOBI should be taken with a particular Pari Neb cup and certain type of air compressor.

My traveling pari air compressor is currently not putting out the right air amount - it was checked by my respiratory therapist this week. I was told to start TOBI this week for the first time ever, and am concerned about starting it with a shotty air compressor. I emailed both my respiratory tech and my nurse this past Wed and have not heard back from them. I have decided to hold off on starting TOBI until I know whether or not my compressor is really okay. I am not concerned about using my air compressor for my saline b/c the dosage of that is less of an issue, but starting a drug.... I don't want to start something that isn't even effectively delivering the right dose.

Background: My pft's have gone down 10% in one year - - I am usually at around 106% for FEV1 and I was at 95% this past Monday at my appt. Nevermind the fact that I was at smokey bars the Thurs and Friday before (not my usual scene), and my husband is in the middle of destroying our main bathroom (lots of dust around). We have a new doctor that I saw for the first time, and he is more proactive. They also said that they have changed to a more active approach for even the 'healthier' patients in clinic.

Any thoughts/ experience with TOBI and specific air compressors (or air compressor requirements)?

Thanks for your thoughts.....

point · Oct 25, 2008

On the Novartis website it states the TOBI should be taken with a particular Pari Neb cup and certain type of air compressor.
 
 My traveling pari air compressor is currently not putting out the right air amount - it was checked by my respiratory therapist this week. I was told to start TOBI this week for the first time ever, and am concerned about starting it with a shotty air compressor. I emailed both my respiratory tech and my nurse this past Wed and have not heard back from them. I have decided to hold off on starting TOBI until I know whether or not my compressor is really okay. I am not concerned about using my air compressor for my saline b/c the dosage of that is less of an issue, but starting a drug.... I don't want to start something that isn't even effectively delivering the right dose.
 
 Background: My pft's have gone down 10% in one year - - I am usually at around 106% for FEV1 and I was at 95% this past Monday at my appt. Nevermind the fact that I was at smokey bars the Thurs and Friday before (not my usual scene), and my husband is in the middle of destroying our main bathroom (lots of dust around). We have a new doctor that I saw for the first time, and he is more proactive. They also said that they have changed to a more active approach for even the 'healthier' patients in clinic.
 
 Any thoughts/ experience with TOBI and specific air compressors (or air compressor requirements)?
 
 Thanks for your thoughts.....

Ratatosk · Oct 26, 2008

I believe the pari proneb ultra II and the devilbiss pulmoaide are the appropriate ones for Tobi. We have both. We had issues with a faulty pari proneb ultra when DS was a baby and tobi took about 50 minutes and when we used an older devilbiss pulmoaid from a relative as a spare we noticed the tobi didn't take more than 25 minutes.

We use a pari proneb ultra II that I bought out of pocket for about $45 online for use when we travel. It's more compact than the devilbiss, which tends to be a bit bulkier. The devilbiss I believe cost me about $100.

Ratatosk · Oct 26, 2008

I believe the pari proneb ultra II and the devilbiss pulmoaide are the appropriate ones for Tobi. We have both. We had issues with a faulty pari proneb ultra when DS was a baby and tobi took about 50 minutes and when we used an older devilbiss pulmoaid from a relative as a spare we noticed the tobi didn't take more than 25 minutes.

We use a pari proneb ultra II that I bought out of pocket for about $45 online for use when we travel. It's more compact than the devilbiss, which tends to be a bit bulkier. The devilbiss I believe cost me about $100.

Ratatosk · Oct 26, 2008

I believe the pari proneb ultra II and the devilbiss pulmoaide are the appropriate ones for Tobi. We have both. We had issues with a faulty pari proneb ultra when DS was a baby and tobi took about 50 minutes and when we used an older devilbiss pulmoaid from a relative as a spare we noticed the tobi didn't take more than 25 minutes.

We use a pari proneb ultra II that I bought out of pocket for about $45 online for use when we travel. It's more compact than the devilbiss, which tends to be a bit bulkier. The devilbiss I believe cost me about $100.

Ratatosk · Oct 26, 2008

I believe the pari proneb ultra II and the devilbiss pulmoaide are the appropriate ones for Tobi. We have both. We had issues with a faulty pari proneb ultra when DS was a baby and tobi took about 50 minutes and when we used an older devilbiss pulmoaid from a relative as a spare we noticed the tobi didn't take more than 25 minutes.

We use a pari proneb ultra II that I bought out of pocket for about $45 online for use when we travel. It's more compact than the devilbiss, which tends to be a bit bulkier. The devilbiss I believe cost me about $100.

Ratatosk · Oct 26, 2008

I believe the pari proneb ultra II and the devilbiss pulmoaide are the appropriate ones for Tobi. We have both. We had issues with a faulty pari proneb ultra when DS was a baby and tobi took about 50 minutes and when we used an older devilbiss pulmoaid from a relative as a spare we noticed the tobi didn't take more than 25 minutes.
 
 We use a pari proneb ultra II that I bought out of pocket for about $45 online for use when we travel. It's more compact than the devilbiss, which tends to be a bit bulkier. The devilbiss I believe cost me about $100.

Nightwriter · Oct 26, 2008

Hi Christina,

I'm reading your post and scratching my head. You've had 106% FEV1 (OMG!) that has dropped to 95% FEV1 (still OMG). You have been hanging around a smokey bar and are living with dust from a remodel. I think you know exactly why your FEV1 has gone down. Did you tell your doctor this? And if you did, there was no discussion of asthma testing? Do you even have signs and symptoms of an infection?

Now I know this is not what you asked about in your post, but since you included this info, I hope I'm not being intrusive. I'm no doctor, but unless you are leaving out some other information, this sounds like inflammation not infection. And if it is inflammation, what is the Tobi for? I know, your doctor will say to prevent infection... so maybe they can keep the clinic's numbers up for now. But at what cost to you?

If you use Tobi when you don't need it, in the future, it will not be there for you when you do need it. You will build resistance to it. It is the single most valuable drug CFer's have at this time. Have you ever been tested for asthma/allergies? Most CFer's have asthma because of hypersensitive airways. I would ask my doctor if this drop in FEV1 can be due to airway swelling caused by inflammation due to unusual (and extremely irritating) triggers. Smokey bars and remodeling! I would want to see if I can get my FEV1 back up in ways other than powerful drugs like Tobi, which can even threaten your hearing.

Proactive doesn't necessarily mean antibiotics. I have learned that it means controlling inflammation so that infection doesn't set it. Keeping airways open, getting the mucus out. I don't whether you are on any asthma meds already, but the best medicine still can't counteract the aggravating environment you've been exposed to.

If it were me I'd stay away from smokey bars, seal off the dusty bathroom by keeping the door closed or hang a thick plastic sheet (made for construction) over the doorway, use no-odor paint, and get an air filter.

Sorry if I've overstepped my bounds. But I felt compelled to say something.

Nightwriter · Oct 26, 2008

Hi Christina,

I'm reading your post and scratching my head. You've had 106% FEV1 (OMG!) that has dropped to 95% FEV1 (still OMG). You have been hanging around a smokey bar and are living with dust from a remodel. I think you know exactly why your FEV1 has gone down. Did you tell your doctor this? And if you did, there was no discussion of asthma testing? Do you even have signs and symptoms of an infection?

Now I know this is not what you asked about in your post, but since you included this info, I hope I'm not being intrusive. I'm no doctor, but unless you are leaving out some other information, this sounds like inflammation not infection. And if it is inflammation, what is the Tobi for? I know, your doctor will say to prevent infection... so maybe they can keep the clinic's numbers up for now. But at what cost to you?

If you use Tobi when you don't need it, in the future, it will not be there for you when you do need it. You will build resistance to it. It is the single most valuable drug CFer's have at this time. Have you ever been tested for asthma/allergies? Most CFer's have asthma because of hypersensitive airways. I would ask my doctor if this drop in FEV1 can be due to airway swelling caused by inflammation due to unusual (and extremely irritating) triggers. Smokey bars and remodeling! I would want to see if I can get my FEV1 back up in ways other than powerful drugs like Tobi, which can even threaten your hearing.

Proactive doesn't necessarily mean antibiotics. I have learned that it means controlling inflammation so that infection doesn't set it. Keeping airways open, getting the mucus out. I don't whether you are on any asthma meds already, but the best medicine still can't counteract the aggravating environment you've been exposed to.

If it were me I'd stay away from smokey bars, seal off the dusty bathroom by keeping the door closed or hang a thick plastic sheet (made for construction) over the doorway, use no-odor paint, and get an air filter.

Sorry if I've overstepped my bounds. But I felt compelled to say something.

Nightwriter · Oct 26, 2008

Hi Christina,

I'm reading your post and scratching my head. You've had 106% FEV1 (OMG!) that has dropped to 95% FEV1 (still OMG). You have been hanging around a smokey bar and are living with dust from a remodel. I think you know exactly why your FEV1 has gone down. Did you tell your doctor this? And if you did, there was no discussion of asthma testing? Do you even have signs and symptoms of an infection?

Now I know this is not what you asked about in your post, but since you included this info, I hope I'm not being intrusive. I'm no doctor, but unless you are leaving out some other information, this sounds like inflammation not infection. And if it is inflammation, what is the Tobi for? I know, your doctor will say to prevent infection... so maybe they can keep the clinic's numbers up for now. But at what cost to you?

If you use Tobi when you don't need it, in the future, it will not be there for you when you do need it. You will build resistance to it. It is the single most valuable drug CFer's have at this time. Have you ever been tested for asthma/allergies? Most CFer's have asthma because of hypersensitive airways. I would ask my doctor if this drop in FEV1 can be due to airway swelling caused by inflammation due to unusual (and extremely irritating) triggers. Smokey bars and remodeling! I would want to see if I can get my FEV1 back up in ways other than powerful drugs like Tobi, which can even threaten your hearing.

Proactive doesn't necessarily mean antibiotics. I have learned that it means controlling inflammation so that infection doesn't set it. Keeping airways open, getting the mucus out. I don't whether you are on any asthma meds already, but the best medicine still can't counteract the aggravating environment you've been exposed to.

If it were me I'd stay away from smokey bars, seal off the dusty bathroom by keeping the door closed or hang a thick plastic sheet (made for construction) over the doorway, use no-odor paint, and get an air filter.

Sorry if I've overstepped my bounds. But I felt compelled to say something.

Nightwriter · Oct 26, 2008

Hi Christina,

I'm reading your post and scratching my head. You've had 106% FEV1 (OMG!) that has dropped to 95% FEV1 (still OMG). You have been hanging around a smokey bar and are living with dust from a remodel. I think you know exactly why your FEV1 has gone down. Did you tell your doctor this? And if you did, there was no discussion of asthma testing? Do you even have signs and symptoms of an infection?

Now I know this is not what you asked about in your post, but since you included this info, I hope I'm not being intrusive. I'm no doctor, but unless you are leaving out some other information, this sounds like inflammation not infection. And if it is inflammation, what is the Tobi for? I know, your doctor will say to prevent infection... so maybe they can keep the clinic's numbers up for now. But at what cost to you?

If you use Tobi when you don't need it, in the future, it will not be there for you when you do need it. You will build resistance to it. It is the single most valuable drug CFer's have at this time. Have you ever been tested for asthma/allergies? Most CFer's have asthma because of hypersensitive airways. I would ask my doctor if this drop in FEV1 can be due to airway swelling caused by inflammation due to unusual (and extremely irritating) triggers. Smokey bars and remodeling! I would want to see if I can get my FEV1 back up in ways other than powerful drugs like Tobi, which can even threaten your hearing.

Proactive doesn't necessarily mean antibiotics. I have learned that it means controlling inflammation so that infection doesn't set it. Keeping airways open, getting the mucus out. I don't whether you are on any asthma meds already, but the best medicine still can't counteract the aggravating environment you've been exposed to.

If it were me I'd stay away from smokey bars, seal off the dusty bathroom by keeping the door closed or hang a thick plastic sheet (made for construction) over the doorway, use no-odor paint, and get an air filter.

Sorry if I've overstepped my bounds. But I felt compelled to say something.

Nightwriter · Oct 26, 2008

Hi Christina,
 
 I'm reading your post and scratching my head. You've had 106% FEV1 (OMG!) that has dropped to 95% FEV1 (still OMG). You have been hanging around a smokey bar and are living with dust from a remodel. I think you know exactly why your FEV1 has gone down. Did you tell your doctor this? And if you did, there was no discussion of asthma testing? Do you even have signs and symptoms of an infection?
 
 Now I know this is not what you asked about in your post, but since you included this info, I hope I'm not being intrusive. I'm no doctor, but unless you are leaving out some other information, this sounds like inflammation not infection. And if it is inflammation, what is the Tobi for? I know, your doctor will say to prevent infection... so maybe they can keep the clinic's numbers up for now. But at what cost to you?
 
 If you use Tobi when you don't need it, in the future, it will not be there for you when you do need it. You will build resistance to it. It is the single most valuable drug CFer's have at this time. Have you ever been tested for asthma/allergies? Most CFer's have asthma because of hypersensitive airways. I would ask my doctor if this drop in FEV1 can be due to airway swelling caused by inflammation due to unusual (and extremely irritating) triggers. Smokey bars and remodeling! I would want to see if I can get my FEV1 back up in ways other than powerful drugs like Tobi, which can even threaten your hearing.
 
 Proactive doesn't necessarily mean antibiotics. I have learned that it means controlling inflammation so that infection doesn't set it. Keeping airways open, getting the mucus out. I don't whether you are on any asthma meds already, but the best medicine still can't counteract the aggravating environment you've been exposed to.
 
 If it were me I'd stay away from smokey bars, seal off the dusty bathroom by keeping the door closed or hang a thick plastic sheet (made for construction) over the doorway, use no-odor paint, and get an air filter.
 
 Sorry if I've overstepped my bounds. But I felt compelled to say something.

point · Oct 27, 2008

I am very uneasy about the whole thing. They have a new dr. in the Adult CF program that I met him for the first time this past Monday. He was questioning everything I did.... I was only doing saline once/day! I am not on pulmozyme! I felt bad, as if I wasn't taking care of myself when I am following what my usual dr. always has established for me as a treatment plan.

Our clinic changed from the Knudson to the newer model when normalizing spirometry last year. With that change, I went from an FEV1 of ~ %110 to about 102% last October due to the change in the normalizing model. Then with each of my quarterly clinic visits, I was at 99%, 96% and then 93% this past Monday. Because of the decrease seen at each visit, they want me to try TOBI - just a month, as if they were even considering the every other month deal. I was shocked because I have never been on TOBI. Their explanation is that they are now taking a more aggressive approach even for the 'healthier' patients. At the same appt, the resp tech checked my air compressor and it is not fxn at the full output. Since the appt, I am now doing the saline twice a day. That makes sense to me. In the past the saline made my voice very hoarse so my dr was okay with it being only once a day since I excercise regularly and have good pfts. I asked about allergy testing a while ago and the dr only rx the RAST blood work. I have never met with an allergist.

Anyway, long story short, I am at an inpass. I feel as if my PFTs are down because it seems every time I have an appt, I end up cleaning our house the day before or, as in this case, was just exposed to unusual environmental circumstances. I also wonder if I am just in denial about actually having my tests down, but truly don't think so. I ran 3.5 mi this weekend and felt fine afterward. I am also concerned in general about taking TOBI nevermind the fact that I have a shotty air compressor. I still have not heard back from the nurse and resp tech, but I do know they are at the CF conference now for this week. I will probably email my usual dr. She was the one who made the final decision about going on TOBI. All very odd.

Thanks for both of your responses. I really appreciate it!

point · Oct 27, 2008

I am very uneasy about the whole thing. They have a new dr. in the Adult CF program that I met him for the first time this past Monday. He was questioning everything I did.... I was only doing saline once/day! I am not on pulmozyme! I felt bad, as if I wasn't taking care of myself when I am following what my usual dr. always has established for me as a treatment plan.

Our clinic changed from the Knudson to the newer model when normalizing spirometry last year. With that change, I went from an FEV1 of ~ %110 to about 102% last October due to the change in the normalizing model. Then with each of my quarterly clinic visits, I was at 99%, 96% and then 93% this past Monday. Because of the decrease seen at each visit, they want me to try TOBI - just a month, as if they were even considering the every other month deal. I was shocked because I have never been on TOBI. Their explanation is that they are now taking a more aggressive approach even for the 'healthier' patients. At the same appt, the resp tech checked my air compressor and it is not fxn at the full output. Since the appt, I am now doing the saline twice a day. That makes sense to me. In the past the saline made my voice very hoarse so my dr was okay with it being only once a day since I excercise regularly and have good pfts. I asked about allergy testing a while ago and the dr only rx the RAST blood work. I have never met with an allergist.

Anyway, long story short, I am at an inpass. I feel as if my PFTs are down because it seems every time I have an appt, I end up cleaning our house the day before or, as in this case, was just exposed to unusual environmental circumstances. I also wonder if I am just in denial about actually having my tests down, but truly don't think so. I ran 3.5 mi this weekend and felt fine afterward. I am also concerned in general about taking TOBI nevermind the fact that I have a shotty air compressor. I still have not heard back from the nurse and resp tech, but I do know they are at the CF conference now for this week. I will probably email my usual dr. She was the one who made the final decision about going on TOBI. All very odd.

Thanks for both of your responses. I really appreciate it!

point · Oct 27, 2008

I am very uneasy about the whole thing. They have a new dr. in the Adult CF program that I met him for the first time this past Monday. He was questioning everything I did.... I was only doing saline once/day! I am not on pulmozyme! I felt bad, as if I wasn't taking care of myself when I am following what my usual dr. always has established for me as a treatment plan.

Our clinic changed from the Knudson to the newer model when normalizing spirometry last year. With that change, I went from an FEV1 of ~ %110 to about 102% last October due to the change in the normalizing model. Then with each of my quarterly clinic visits, I was at 99%, 96% and then 93% this past Monday. Because of the decrease seen at each visit, they want me to try TOBI - just a month, as if they were even considering the every other month deal. I was shocked because I have never been on TOBI. Their explanation is that they are now taking a more aggressive approach even for the 'healthier' patients. At the same appt, the resp tech checked my air compressor and it is not fxn at the full output. Since the appt, I am now doing the saline twice a day. That makes sense to me. In the past the saline made my voice very hoarse so my dr was okay with it being only once a day since I excercise regularly and have good pfts. I asked about allergy testing a while ago and the dr only rx the RAST blood work. I have never met with an allergist.

Anyway, long story short, I am at an inpass. I feel as if my PFTs are down because it seems every time I have an appt, I end up cleaning our house the day before or, as in this case, was just exposed to unusual environmental circumstances. I also wonder if I am just in denial about actually having my tests down, but truly don't think so. I ran 3.5 mi this weekend and felt fine afterward. I am also concerned in general about taking TOBI nevermind the fact that I have a shotty air compressor. I still have not heard back from the nurse and resp tech, but I do know they are at the CF conference now for this week. I will probably email my usual dr. She was the one who made the final decision about going on TOBI. All very odd.

Thanks for both of your responses. I really appreciate it!

point · Oct 27, 2008

I am very uneasy about the whole thing. They have a new dr. in the Adult CF program that I met him for the first time this past Monday. He was questioning everything I did.... I was only doing saline once/day! I am not on pulmozyme! I felt bad, as if I wasn't taking care of myself when I am following what my usual dr. always has established for me as a treatment plan.

Our clinic changed from the Knudson to the newer model when normalizing spirometry last year. With that change, I went from an FEV1 of ~ %110 to about 102% last October due to the change in the normalizing model. Then with each of my quarterly clinic visits, I was at 99%, 96% and then 93% this past Monday. Because of the decrease seen at each visit, they want me to try TOBI - just a month, as if they were even considering the every other month deal. I was shocked because I have never been on TOBI. Their explanation is that they are now taking a more aggressive approach even for the 'healthier' patients. At the same appt, the resp tech checked my air compressor and it is not fxn at the full output. Since the appt, I am now doing the saline twice a day. That makes sense to me. In the past the saline made my voice very hoarse so my dr was okay with it being only once a day since I excercise regularly and have good pfts. I asked about allergy testing a while ago and the dr only rx the RAST blood work. I have never met with an allergist.

Anyway, long story short, I am at an inpass. I feel as if my PFTs are down because it seems every time I have an appt, I end up cleaning our house the day before or, as in this case, was just exposed to unusual environmental circumstances. I also wonder if I am just in denial about actually having my tests down, but truly don't think so. I ran 3.5 mi this weekend and felt fine afterward. I am also concerned in general about taking TOBI nevermind the fact that I have a shotty air compressor. I still have not heard back from the nurse and resp tech, but I do know they are at the CF conference now for this week. I will probably email my usual dr. She was the one who made the final decision about going on TOBI. All very odd.

Thanks for both of your responses. I really appreciate it!

point · Oct 27, 2008

I am very uneasy about the whole thing. They have a new dr. in the Adult CF program that I met him for the first time this past Monday. He was questioning everything I did.... I was only doing saline once/day! I am not on pulmozyme! I felt bad, as if I wasn't taking care of myself when I am following what my usual dr. always has established for me as a treatment plan.
 
 Our clinic changed from the Knudson to the newer model when normalizing spirometry last year. With that change, I went from an FEV1 of ~ %110 to about 102% last October due to the change in the normalizing model. Then with each of my quarterly clinic visits, I was at 99%, 96% and then 93% this past Monday. Because of the decrease seen at each visit, they want me to try TOBI - just a month, as if they were even considering the every other month deal. I was shocked because I have never been on TOBI. Their explanation is that they are now taking a more aggressive approach even for the 'healthier' patients. At the same appt, the resp tech checked my air compressor and it is not fxn at the full output. Since the appt, I am now doing the saline twice a day. That makes sense to me. In the past the saline made my voice very hoarse so my dr was okay with it being only once a day since I excercise regularly and have good pfts. I asked about allergy testing a while ago and the dr only rx the RAST blood work. I have never met with an allergist.
 
 Anyway, long story short, I am at an inpass. I feel as if my PFTs are down because it seems every time I have an appt, I end up cleaning our house the day before or, as in this case, was just exposed to unusual environmental circumstances. I also wonder if I am just in denial about actually having my tests down, but truly don't think so. I ran 3.5 mi this weekend and felt fine afterward. I am also concerned in general about taking TOBI nevermind the fact that I have a shotty air compressor. I still have not heard back from the nurse and resp tech, but I do know they are at the CF conference now for this week. I will probably email my usual dr. She was the one who made the final decision about going on TOBI. All very odd.
 
 Thanks for both of your responses. I really appreciate it!

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