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Still no better

ladybug

New member
Hello.

I've been on tobra IV every 24 hours and merrem every 8 hours for the past week. I'm thinking these dosages seem a little infrequent for p.a., but not sure.

I have a doc appt. tomorrow to check PFTs and I can't imagine they'll be any better.

I'm still exhausted and coughing up stuff... not AS much, but still green and still more than I remember coughing up after 1 week on IV abx.

Not sure I should suggest upping my merrem or tobra (they claim every 24 hours is easier on kidneys, ears, etc.) or if I should suggest a change overall in meds at this point?? Any suggestions? What would you do?

I do feel a BIT better congestion-wise but just not the "dry" cough I usually end up with at the end of abx. Not even close.

Has this ever happened to you? What changes, if any, do docs make after a week? Should I be feeling MUCH better by now or is any decrease in cough a good sign?

Thanks,
 

ladybug

New member
Hello.

I've been on tobra IV every 24 hours and merrem every 8 hours for the past week. I'm thinking these dosages seem a little infrequent for p.a., but not sure.

I have a doc appt. tomorrow to check PFTs and I can't imagine they'll be any better.

I'm still exhausted and coughing up stuff... not AS much, but still green and still more than I remember coughing up after 1 week on IV abx.

Not sure I should suggest upping my merrem or tobra (they claim every 24 hours is easier on kidneys, ears, etc.) or if I should suggest a change overall in meds at this point?? Any suggestions? What would you do?

I do feel a BIT better congestion-wise but just not the "dry" cough I usually end up with at the end of abx. Not even close.

Has this ever happened to you? What changes, if any, do docs make after a week? Should I be feeling MUCH better by now or is any decrease in cough a good sign?

Thanks,
 

ladybug

New member
Hello.

I've been on tobra IV every 24 hours and merrem every 8 hours for the past week. I'm thinking these dosages seem a little infrequent for p.a., but not sure.

I have a doc appt. tomorrow to check PFTs and I can't imagine they'll be any better.

I'm still exhausted and coughing up stuff... not AS much, but still green and still more than I remember coughing up after 1 week on IV abx.

Not sure I should suggest upping my merrem or tobra (they claim every 24 hours is easier on kidneys, ears, etc.) or if I should suggest a change overall in meds at this point?? Any suggestions? What would you do?

I do feel a BIT better congestion-wise but just not the "dry" cough I usually end up with at the end of abx. Not even close.

Has this ever happened to you? What changes, if any, do docs make after a week? Should I be feeling MUCH better by now or is any decrease in cough a good sign?

Thanks,
 

ladybug

New member
Hello.

I've been on tobra IV every 24 hours and merrem every 8 hours for the past week. I'm thinking these dosages seem a little infrequent for p.a., but not sure.

I have a doc appt. tomorrow to check PFTs and I can't imagine they'll be any better.

I'm still exhausted and coughing up stuff... not AS much, but still green and still more than I remember coughing up after 1 week on IV abx.

Not sure I should suggest upping my merrem or tobra (they claim every 24 hours is easier on kidneys, ears, etc.) or if I should suggest a change overall in meds at this point?? Any suggestions? What would you do?

I do feel a BIT better congestion-wise but just not the "dry" cough I usually end up with at the end of abx. Not even close.

Has this ever happened to you? What changes, if any, do docs make after a week? Should I be feeling MUCH better by now or is any decrease in cough a good sign?

Thanks,
 

ladybug

New member
Hello.
<br />
<br />I've been on tobra IV every 24 hours and merrem every 8 hours for the past week. I'm thinking these dosages seem a little infrequent for p.a., but not sure.
<br />
<br />I have a doc appt. tomorrow to check PFTs and I can't imagine they'll be any better.
<br />
<br />I'm still exhausted and coughing up stuff... not AS much, but still green and still more than I remember coughing up after 1 week on IV abx.
<br />
<br />Not sure I should suggest upping my merrem or tobra (they claim every 24 hours is easier on kidneys, ears, etc.) or if I should suggest a change overall in meds at this point?? Any suggestions? What would you do?
<br />
<br />I do feel a BIT better congestion-wise but just not the "dry" cough I usually end up with at the end of abx. Not even close.
<br />
<br />Has this ever happened to you? What changes, if any, do docs make after a week? Should I be feeling MUCH better by now or is any decrease in cough a good sign?
<br />
<br />Thanks,
 

JazzysMom

New member
I hate to break it to you, but it might just be the nature of the beast. If you were not feeling a difference at all then I would worry.

There is also a possibility that you might need a 3rd med into the mix. Years ago as a kid, TObra was enough for me. THen as time went on I needed 2 meds & now I am on 3 or more depending on if its MRSA or PA that is the bigger problem.

I dont think changing the doses is the answer. I would address it with your clinic. Tell them you dont think you are where you should be at this point & want their opinion.

HUGS
 

JazzysMom

New member
I hate to break it to you, but it might just be the nature of the beast. If you were not feeling a difference at all then I would worry.

There is also a possibility that you might need a 3rd med into the mix. Years ago as a kid, TObra was enough for me. THen as time went on I needed 2 meds & now I am on 3 or more depending on if its MRSA or PA that is the bigger problem.

I dont think changing the doses is the answer. I would address it with your clinic. Tell them you dont think you are where you should be at this point & want their opinion.

HUGS
 

JazzysMom

New member
I hate to break it to you, but it might just be the nature of the beast. If you were not feeling a difference at all then I would worry.

There is also a possibility that you might need a 3rd med into the mix. Years ago as a kid, TObra was enough for me. THen as time went on I needed 2 meds & now I am on 3 or more depending on if its MRSA or PA that is the bigger problem.

I dont think changing the doses is the answer. I would address it with your clinic. Tell them you dont think you are where you should be at this point & want their opinion.

HUGS
 

JazzysMom

New member
I hate to break it to you, but it might just be the nature of the beast. If you were not feeling a difference at all then I would worry.

There is also a possibility that you might need a 3rd med into the mix. Years ago as a kid, TObra was enough for me. THen as time went on I needed 2 meds & now I am on 3 or more depending on if its MRSA or PA that is the bigger problem.

I dont think changing the doses is the answer. I would address it with your clinic. Tell them you dont think you are where you should be at this point & want their opinion.

HUGS
 

JazzysMom

New member
I hate to break it to you, but it might just be the nature of the beast. If you were not feeling a difference at all then I would worry.
<br />
<br />There is also a possibility that you might need a 3rd med into the mix. Years ago as a kid, TObra was enough for me. THen as time went on I needed 2 meds & now I am on 3 or more depending on if its MRSA or PA that is the bigger problem.
<br />
<br />I dont think changing the doses is the answer. I would address it with your clinic. Tell them you dont think you are where you should be at this point & want their opinion.
<br />
<br />HUGS
 

ladybug

New member
So, Mel...

You think this is kinda normal as we "grow up"? Like we won't get that "dry" cough when we're better, but just a decrease in the wet and cruddy cough? I just remember always being able to say I'm not coughing anything up by about week 1 or so of IV meds.

I may ask them to throw a third med into the bunch. I'm not personally fond of how my current center handles things. So, I'm sure this will be an argument or "I TOLD YOU SO". They're really into power plays and stuff and I'm always afraid to approach anything new or suggest anything to them. I still do it, but always with a bit of anxiety on how I'll be treated when I suggest something that they "don't usually do". They seem to treat everyone the same and if they do tobra once a day for everyone, they're unlikely to change it for me. If they do two meds on IVs at one time for everyone, they're unlikely to change it for me. That sort of thing. Its a huge bummer and one reason I'm looking forward to getting out of this city on our next duty station. LOL.

This is way off topic, but the other day I called my clinic nurse for a refill of test strips for CFRD. I'm very borderline CFRD, but do have it according to OGTT.

Anyway, she was very rude and said she'd fill it "THIS TIME", but that I'd have to find an endocrinologist for any future fills since, according to the CFF, clinics are now supposed to "outsource" patients to the specialty they need (i.e. diabetese needs an endo doc, relux, you need to see a gastro doc). She said they're not to prescribe anything for these "other" conditions anymore. Ridiculous. Isn't it more important to give a diabetic her test strips than it is to use a power play and say I MUST go to someone else for this? Its test strips!!! Urgh.

Sorry had to rant. I'm just really tired of my clinic's attitude. I've even entertained the idea of just going to an on-base doc and letting them know what to put me on, etc. to follow my CF care. They're more willing to work with me AND they'll refill my test strips without a problem... Not have to send me to a specialist for such mundane things.

NOt only that, but do they think we enjoy running around town spending tons more money on care for each individual thing that goes along with CF? I mean, I thought that was the purpose of having an all-encompassing CF "TEAM"?!?! WTF.
 

ladybug

New member
So, Mel...

You think this is kinda normal as we "grow up"? Like we won't get that "dry" cough when we're better, but just a decrease in the wet and cruddy cough? I just remember always being able to say I'm not coughing anything up by about week 1 or so of IV meds.

I may ask them to throw a third med into the bunch. I'm not personally fond of how my current center handles things. So, I'm sure this will be an argument or "I TOLD YOU SO". They're really into power plays and stuff and I'm always afraid to approach anything new or suggest anything to them. I still do it, but always with a bit of anxiety on how I'll be treated when I suggest something that they "don't usually do". They seem to treat everyone the same and if they do tobra once a day for everyone, they're unlikely to change it for me. If they do two meds on IVs at one time for everyone, they're unlikely to change it for me. That sort of thing. Its a huge bummer and one reason I'm looking forward to getting out of this city on our next duty station. LOL.

This is way off topic, but the other day I called my clinic nurse for a refill of test strips for CFRD. I'm very borderline CFRD, but do have it according to OGTT.

Anyway, she was very rude and said she'd fill it "THIS TIME", but that I'd have to find an endocrinologist for any future fills since, according to the CFF, clinics are now supposed to "outsource" patients to the specialty they need (i.e. diabetese needs an endo doc, relux, you need to see a gastro doc). She said they're not to prescribe anything for these "other" conditions anymore. Ridiculous. Isn't it more important to give a diabetic her test strips than it is to use a power play and say I MUST go to someone else for this? Its test strips!!! Urgh.

Sorry had to rant. I'm just really tired of my clinic's attitude. I've even entertained the idea of just going to an on-base doc and letting them know what to put me on, etc. to follow my CF care. They're more willing to work with me AND they'll refill my test strips without a problem... Not have to send me to a specialist for such mundane things.

NOt only that, but do they think we enjoy running around town spending tons more money on care for each individual thing that goes along with CF? I mean, I thought that was the purpose of having an all-encompassing CF "TEAM"?!?! WTF.
 

ladybug

New member
So, Mel...

You think this is kinda normal as we "grow up"? Like we won't get that "dry" cough when we're better, but just a decrease in the wet and cruddy cough? I just remember always being able to say I'm not coughing anything up by about week 1 or so of IV meds.

I may ask them to throw a third med into the bunch. I'm not personally fond of how my current center handles things. So, I'm sure this will be an argument or "I TOLD YOU SO". They're really into power plays and stuff and I'm always afraid to approach anything new or suggest anything to them. I still do it, but always with a bit of anxiety on how I'll be treated when I suggest something that they "don't usually do". They seem to treat everyone the same and if they do tobra once a day for everyone, they're unlikely to change it for me. If they do two meds on IVs at one time for everyone, they're unlikely to change it for me. That sort of thing. Its a huge bummer and one reason I'm looking forward to getting out of this city on our next duty station. LOL.

This is way off topic, but the other day I called my clinic nurse for a refill of test strips for CFRD. I'm very borderline CFRD, but do have it according to OGTT.

Anyway, she was very rude and said she'd fill it "THIS TIME", but that I'd have to find an endocrinologist for any future fills since, according to the CFF, clinics are now supposed to "outsource" patients to the specialty they need (i.e. diabetese needs an endo doc, relux, you need to see a gastro doc). She said they're not to prescribe anything for these "other" conditions anymore. Ridiculous. Isn't it more important to give a diabetic her test strips than it is to use a power play and say I MUST go to someone else for this? Its test strips!!! Urgh.

Sorry had to rant. I'm just really tired of my clinic's attitude. I've even entertained the idea of just going to an on-base doc and letting them know what to put me on, etc. to follow my CF care. They're more willing to work with me AND they'll refill my test strips without a problem... Not have to send me to a specialist for such mundane things.

NOt only that, but do they think we enjoy running around town spending tons more money on care for each individual thing that goes along with CF? I mean, I thought that was the purpose of having an all-encompassing CF "TEAM"?!?! WTF.
 

ladybug

New member
So, Mel...

You think this is kinda normal as we "grow up"? Like we won't get that "dry" cough when we're better, but just a decrease in the wet and cruddy cough? I just remember always being able to say I'm not coughing anything up by about week 1 or so of IV meds.

I may ask them to throw a third med into the bunch. I'm not personally fond of how my current center handles things. So, I'm sure this will be an argument or "I TOLD YOU SO". They're really into power plays and stuff and I'm always afraid to approach anything new or suggest anything to them. I still do it, but always with a bit of anxiety on how I'll be treated when I suggest something that they "don't usually do". They seem to treat everyone the same and if they do tobra once a day for everyone, they're unlikely to change it for me. If they do two meds on IVs at one time for everyone, they're unlikely to change it for me. That sort of thing. Its a huge bummer and one reason I'm looking forward to getting out of this city on our next duty station. LOL.

This is way off topic, but the other day I called my clinic nurse for a refill of test strips for CFRD. I'm very borderline CFRD, but do have it according to OGTT.

Anyway, she was very rude and said she'd fill it "THIS TIME", but that I'd have to find an endocrinologist for any future fills since, according to the CFF, clinics are now supposed to "outsource" patients to the specialty they need (i.e. diabetese needs an endo doc, relux, you need to see a gastro doc). She said they're not to prescribe anything for these "other" conditions anymore. Ridiculous. Isn't it more important to give a diabetic her test strips than it is to use a power play and say I MUST go to someone else for this? Its test strips!!! Urgh.

Sorry had to rant. I'm just really tired of my clinic's attitude. I've even entertained the idea of just going to an on-base doc and letting them know what to put me on, etc. to follow my CF care. They're more willing to work with me AND they'll refill my test strips without a problem... Not have to send me to a specialist for such mundane things.

NOt only that, but do they think we enjoy running around town spending tons more money on care for each individual thing that goes along with CF? I mean, I thought that was the purpose of having an all-encompassing CF "TEAM"?!?! WTF.
 

ladybug

New member
So, Mel...
<br />
<br />You think this is kinda normal as we "grow up"? Like we won't get that "dry" cough when we're better, but just a decrease in the wet and cruddy cough? I just remember always being able to say I'm not coughing anything up by about week 1 or so of IV meds.
<br />
<br />I may ask them to throw a third med into the bunch. I'm not personally fond of how my current center handles things. So, I'm sure this will be an argument or "I TOLD YOU SO". They're really into power plays and stuff and I'm always afraid to approach anything new or suggest anything to them. I still do it, but always with a bit of anxiety on how I'll be treated when I suggest something that they "don't usually do". They seem to treat everyone the same and if they do tobra once a day for everyone, they're unlikely to change it for me. If they do two meds on IVs at one time for everyone, they're unlikely to change it for me. That sort of thing. Its a huge bummer and one reason I'm looking forward to getting out of this city on our next duty station. LOL.
<br />
<br />This is way off topic, but the other day I called my clinic nurse for a refill of test strips for CFRD. I'm very borderline CFRD, but do have it according to OGTT.
<br />
<br />Anyway, she was very rude and said she'd fill it "THIS TIME", but that I'd have to find an endocrinologist for any future fills since, according to the CFF, clinics are now supposed to "outsource" patients to the specialty they need (i.e. diabetese needs an endo doc, relux, you need to see a gastro doc). She said they're not to prescribe anything for these "other" conditions anymore. Ridiculous. Isn't it more important to give a diabetic her test strips than it is to use a power play and say I MUST go to someone else for this? Its test strips!!! Urgh.
<br />
<br />Sorry had to rant. I'm just really tired of my clinic's attitude. I've even entertained the idea of just going to an on-base doc and letting them know what to put me on, etc. to follow my CF care. They're more willing to work with me AND they'll refill my test strips without a problem... Not have to send me to a specialist for such mundane things.
<br />
<br />NOt only that, but do they think we enjoy running around town spending tons more money on care for each individual thing that goes along with CF? I mean, I thought that was the purpose of having an all-encompassing CF "TEAM"?!?! WTF.
 

JazzysMom

New member
I am not saying you should not return to that type of cough that you are looking for. I am just saying it might take longer or with more meds now.

It sounds like you have some other issues with that clinic or at least the Nurse. My nurse will call anything in. She even called my seizure med in when my Neurologist was out of town & I was low.
 

JazzysMom

New member
I am not saying you should not return to that type of cough that you are looking for. I am just saying it might take longer or with more meds now.

It sounds like you have some other issues with that clinic or at least the Nurse. My nurse will call anything in. She even called my seizure med in when my Neurologist was out of town & I was low.
 

JazzysMom

New member
I am not saying you should not return to that type of cough that you are looking for. I am just saying it might take longer or with more meds now.

It sounds like you have some other issues with that clinic or at least the Nurse. My nurse will call anything in. She even called my seizure med in when my Neurologist was out of town & I was low.
 

JazzysMom

New member
I am not saying you should not return to that type of cough that you are looking for. I am just saying it might take longer or with more meds now.

It sounds like you have some other issues with that clinic or at least the Nurse. My nurse will call anything in. She even called my seizure med in when my Neurologist was out of town & I was low.
 

JazzysMom

New member
I am not saying you should not return to that type of cough that you are looking for. I am just saying it might take longer or with more meds now.
<br />
<br />It sounds like you have some other issues with that clinic or at least the Nurse. My nurse will call anything in. She even called my seizure med in when my Neurologist was out of town & I was low.
<br />
<br />
 
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