tune ups??

[jdprecious]

Jaelyn has been coughin up a bit of mucus from her lungs since getting fitted for a bigger vest. Now that we are doing the vest more often she is coughing up some mucus like she should. That is the point of the vest right? We had our clinic visit yesterday and a doc we dont normally see wants to put her in for a tune up. I have been a mess since then, crying at the drop of a hat, cant sleep or eat, bad diarrhea. Just worried sick for my child. My mom wants me to see a doc for anxiety but im sick of docs to be honest! To me, hospitalizations and tune ups are such a risk for bugs and such. And to me it is the beginning of the end. I know it helps some ppl that have low lung function but this is not the case with Jaelyn.

a. jaelyn is 5 yrs old, weighs 60lbs and is as tall as a 8 yr old
b. she is currently pa negative
c. she isnt even sick, just coughing up mucus which every cf'er does this is normal
d. this doc has never seen us nor knows jae's cf history and her whole basis for the tune up was the fact she had a mucousy cough

i dont want the tune up now or ever... and a nurse that knows us pretty well said she would talk to the head of the cf clinic to see if we can "get out of it"... we go back in one month to see if her coughing/mucus has improved and i am hoping that she wont culture anything from this last collection of sputum. But I am seriously debating on just telling them flat out no, she isnt getting the tune up. Once you start getting them then you need to continually get them. Then come picc's and ports and all the things that scare me shizless.

So, I guess my question is why did you have to have your first tune up? how old were you? and can they be avoided???

Please help!

 

[jdprecious]

Jaelyn has been coughin up a bit of mucus from her lungs since getting fitted for a bigger vest. Now that we are doing the vest more often she is coughing up some mucus like she should. That is the point of the vest right? We had our clinic visit yesterday and a doc we dont normally see wants to put her in for a tune up. I have been a mess since then, crying at the drop of a hat, cant sleep or eat, bad diarrhea. Just worried sick for my child. My mom wants me to see a doc for anxiety but im sick of docs to be honest! To me, hospitalizations and tune ups are such a risk for bugs and such. And to me it is the beginning of the end. I know it helps some ppl that have low lung function but this is not the case with Jaelyn.

a. jaelyn is 5 yrs old, weighs 60lbs and is as tall as a 8 yr old
b. she is currently pa negative
c. she isnt even sick, just coughing up mucus which every cf'er does this is normal
d. this doc has never seen us nor knows jae's cf history and her whole basis for the tune up was the fact she had a mucousy cough

i dont want the tune up now or ever... and a nurse that knows us pretty well said she would talk to the head of the cf clinic to see if we can "get out of it"... we go back in one month to see if her coughing/mucus has improved and i am hoping that she wont culture anything from this last collection of sputum. But I am seriously debating on just telling them flat out no, she isnt getting the tune up. Once you start getting them then you need to continually get them. Then come picc's and ports and all the things that scare me shizless.

So, I guess my question is why did you have to have your first tune up? how old were you? and can they be avoided???

Please help!

 

[jdprecious]

Jaelyn has been coughin up a bit of mucus from her lungs since getting fitted for a bigger vest. Now that we are doing the vest more often she is coughing up some mucus like she should. That is the point of the vest right? We had our clinic visit yesterday and a doc we dont normally see wants to put her in for a tune up. I have been a mess since then, crying at the drop of a hat, cant sleep or eat, bad diarrhea. Just worried sick for my child. My mom wants me to see a doc for anxiety but im sick of docs to be honest! To me, hospitalizations and tune ups are such a risk for bugs and such. And to me it is the beginning of the end. I know it helps some ppl that have low lung function but this is not the case with Jaelyn.

a. jaelyn is 5 yrs old, weighs 60lbs and is as tall as a 8 yr old
b. she is currently pa negative
c. she isnt even sick, just coughing up mucus which every cf'er does this is normal
d. this doc has never seen us nor knows jae's cf history and her whole basis for the tune up was the fact she had a mucousy cough

i dont want the tune up now or ever... and a nurse that knows us pretty well said she would talk to the head of the cf clinic to see if we can "get out of it"... we go back in one month to see if her coughing/mucus has improved and i am hoping that she wont culture anything from this last collection of sputum. But I am seriously debating on just telling them flat out no, she isnt getting the tune up. Once you start getting them then you need to continually get them. Then come picc's and ports and all the things that scare me shizless.

So, I guess my question is why did you have to have your first tune up? how old were you? and can they be avoided???

Please help!

 

[jdprecious]

Jaelyn has been coughin up a bit of mucus from her lungs since getting fitted for a bigger vest. Now that we are doing the vest more often she is coughing up some mucus like she should. That is the point of the vest right? We had our clinic visit yesterday and a doc we dont normally see wants to put her in for a tune up. I have been a mess since then, crying at the drop of a hat, cant sleep or eat, bad diarrhea. Just worried sick for my child. My mom wants me to see a doc for anxiety but im sick of docs to be honest! To me, hospitalizations and tune ups are such a risk for bugs and such. And to me it is the beginning of the end. I know it helps some ppl that have low lung function but this is not the case with Jaelyn.

a. jaelyn is 5 yrs old, weighs 60lbs and is as tall as a 8 yr old
b. she is currently pa negative
c. she isnt even sick, just coughing up mucus which every cf'er does this is normal
d. this doc has never seen us nor knows jae's cf history and her whole basis for the tune up was the fact she had a mucousy cough

i dont want the tune up now or ever... and a nurse that knows us pretty well said she would talk to the head of the cf clinic to see if we can "get out of it"... we go back in one month to see if her coughing/mucus has improved and i am hoping that she wont culture anything from this last collection of sputum. But I am seriously debating on just telling them flat out no, she isnt getting the tune up. Once you start getting them then you need to continually get them. Then come picc's and ports and all the things that scare me shizless.

So, I guess my question is why did you have to have your first tune up? how old were you? and can they be avoided???

Please help!

 

[jdprecious]

Jaelyn has been coughin up a bit of mucus from her lungs since getting fitted for a bigger vest. Now that we are doing the vest more often she is coughing up some mucus like she should. That is the point of the vest right? We had our clinic visit yesterday and a doc we dont normally see wants to put her in for a tune up. I have been a mess since then, crying at the drop of a hat, cant sleep or eat, bad diarrhea. Just worried sick for my child. My mom wants me to see a doc for anxiety but im sick of docs to be honest! To me, hospitalizations and tune ups are such a risk for bugs and such. And to me it is the beginning of the end. I know it helps some ppl that have low lung function but this is not the case with Jaelyn.

a. jaelyn is 5 yrs old, weighs 60lbs and is as tall as a 8 yr old
b. she is currently pa negative
c. she isnt even sick, just coughing up mucus which every cf'er does this is normal
d. this doc has never seen us nor knows jae's cf history and her whole basis for the tune up was the fact she had a mucousy cough

i dont want the tune up now or ever... and a nurse that knows us pretty well said she would talk to the head of the cf clinic to see if we can "get out of it"... we go back in one month to see if her coughing/mucus has improved and i am hoping that she wont culture anything from this last collection of sputum. But I am seriously debating on just telling them flat out no, she isnt getting the tune up. Once you start getting them then you need to continually get them. Then come picc's and ports and all the things that scare me shizless.

So, I guess my question is why did you have to have your first tune up? how old were you? and can they be avoided???

Please help!

 

[jdprecious]

Jaelyn has been coughin up a bit of mucus from her lungs since getting fitted for a bigger vest. Now that we are doing the vest more often she is coughing up some mucus like she should. That is the point of the vest right? We had our clinic visit yesterday and a doc we dont normally see wants to put her in for a tune up. I have been a mess since then, crying at the drop of a hat, cant sleep or eat, bad diarrhea. Just worried sick for my child. My mom wants me to see a doc for anxiety but im sick of docs to be honest! To me, hospitalizations and tune ups are such a risk for bugs and such. And to me it is the beginning of the end. I know it helps some ppl that have low lung function but this is not the case with Jaelyn.

a. jaelyn is 5 yrs old, weighs 60lbs and is as tall as a 8 yr old
b. she is currently pa negative
c. she isnt even sick, just coughing up mucus which every cf'er does this is normal
d. this doc has never seen us nor knows jae's cf history and her whole basis for the tune up was the fact she had a mucousy cough

i dont want the tune up now or ever... and a nurse that knows us pretty well said she would talk to the head of the cf clinic to see if we can "get out of it"... we go back in one month to see if her coughing/mucus has improved and i am hoping that she wont culture anything from this last collection of sputum. But I am seriously debating on just telling them flat out no, she isnt getting the tune up. Once you start getting them then you need to continually get them. Then come picc's and ports and all the things that scare me shizless.

So, I guess my question is why did you have to have your first tune up? how old were you? and can they be avoided???

Please help!

 

[vmhoward]

Why don't you ask if maybe they will give her a PICC line and she can get her IVs at home if you are so worried about the bacteria etc at the hospital. Maybe that will be better for you.

 

[vmhoward]

Why don't you ask if maybe they will give her a PICC line and she can get her IVs at home if you are so worried about the bacteria etc at the hospital. Maybe that will be better for you.

 

[vmhoward]

Why don't you ask if maybe they will give her a PICC line and she can get her IVs at home if you are so worried about the bacteria etc at the hospital. Maybe that will be better for you.

 

[vmhoward]

Why don't you ask if maybe they will give her a PICC line and she can get her IVs at home if you are so worried about the bacteria etc at the hospital. Maybe that will be better for you.

 

[vmhoward]

Why don't you ask if maybe they will give her a PICC line and she can get her IVs at home if you are so worried about the bacteria etc at the hospital. Maybe that will be better for you.

 

[vmhoward]

Why don't you ask if maybe they will give her a PICC line and she can get her IVs at home if you are so worried about the bacteria etc at the hospital. Maybe that will be better for you.

 

[Chaggie]

Tuneups are deffinately not the beginning of the end, but used to keep you at your best. if she doesn't culture PA, does she culture any other bugs. She also wouldn't have to always get them once she starts. Some docs do IV"s 3-4 times a year regardless of how you feel, but that's to keep away infections, if she isn't culturing anything then there isn't anything for abx to kill. If she isn't culturing anything I would question it. A mucusy cough, IMNSHO, is not grounds for a tune up. Bugs on the other hand, it might not be a bad idea. I'd ask to do them at home though not in the hospital, I'm not a fan of the hospital because of the chance of picking up other bugs.

 

[Chaggie]

Tuneups are deffinately not the beginning of the end, but used to keep you at your best. if she doesn't culture PA, does she culture any other bugs. She also wouldn't have to always get them once she starts. Some docs do IV"s 3-4 times a year regardless of how you feel, but that's to keep away infections, if she isn't culturing anything then there isn't anything for abx to kill. If she isn't culturing anything I would question it. A mucusy cough, IMNSHO, is not grounds for a tune up. Bugs on the other hand, it might not be a bad idea. I'd ask to do them at home though not in the hospital, I'm not a fan of the hospital because of the chance of picking up other bugs.

 

[Chaggie]

Tuneups are deffinately not the beginning of the end, but used to keep you at your best. if she doesn't culture PA, does she culture any other bugs. She also wouldn't have to always get them once she starts. Some docs do IV"s 3-4 times a year regardless of how you feel, but that's to keep away infections, if she isn't culturing anything then there isn't anything for abx to kill. If she isn't culturing anything I would question it. A mucusy cough, IMNSHO, is not grounds for a tune up. Bugs on the other hand, it might not be a bad idea. I'd ask to do them at home though not in the hospital, I'm not a fan of the hospital because of the chance of picking up other bugs.

 

[Chaggie]

Tuneups are deffinately not the beginning of the end, but used to keep you at your best. if she doesn't culture PA, does she culture any other bugs. She also wouldn't have to always get them once she starts. Some docs do IV"s 3-4 times a year regardless of how you feel, but that's to keep away infections, if she isn't culturing anything then there isn't anything for abx to kill. If she isn't culturing anything I would question it. A mucusy cough, IMNSHO, is not grounds for a tune up. Bugs on the other hand, it might not be a bad idea. I'd ask to do them at home though not in the hospital, I'm not a fan of the hospital because of the chance of picking up other bugs.

 

[Chaggie]

Tuneups are deffinately not the beginning of the end, but used to keep you at your best. if she doesn't culture PA, does she culture any other bugs. She also wouldn't have to always get them once she starts. Some docs do IV"s 3-4 times a year regardless of how you feel, but that's to keep away infections, if she isn't culturing anything then there isn't anything for abx to kill. If she isn't culturing anything I would question it. A mucusy cough, IMNSHO, is not grounds for a tune up. Bugs on the other hand, it might not be a bad idea. I'd ask to do them at home though not in the hospital, I'm not a fan of the hospital because of the chance of picking up other bugs.

 

[Chaggie]

Tuneups are deffinately not the beginning of the end, but used to keep you at your best. if she doesn't culture PA, does she culture any other bugs. She also wouldn't have to always get them once she starts. Some docs do IV"s 3-4 times a year regardless of how you feel, but that's to keep away infections, if she isn't culturing anything then there isn't anything for abx to kill. If she isn't culturing anything I would question it. A mucusy cough, IMNSHO, is not grounds for a tune up. Bugs on the other hand, it might not be a bad idea. I'd ask to do them at home though not in the hospital, I'm not a fan of the hospital because of the chance of picking up other bugs.

 

[JazzysMom]

Doctors vary on this idea. I tried tune ups for a bit in my twenties. Well actually twice and both times I ended up back in the hospital shortly after with true exacerbations.

I decided no more preventative tune ups. Now I go in when I have a flare up that cant be handled at home or on oral/nebbed antibiotics.

If she isnt culturing anything (when was her last culture btw?) that the antibiotics wont do much because there is nothing to fight.

SINCE the doctor who said this is NOT your regular doctor I would wait. Work hard on clearing her out with the vest etc. Check in with her regular doctor. Not all doctors in the same group are always on the same page and even when they are.....each patient is different.

 

[JazzysMom]

Doctors vary on this idea. I tried tune ups for a bit in my twenties. Well actually twice and both times I ended up back in the hospital shortly after with true exacerbations.

I decided no more preventative tune ups. Now I go in when I have a flare up that cant be handled at home or on oral/nebbed antibiotics.

If she isnt culturing anything (when was her last culture btw?) that the antibiotics wont do much because there is nothing to fight.

SINCE the doctor who said this is NOT your regular doctor I would wait. Work hard on clearing her out with the vest etc. Check in with her regular doctor. Not all doctors in the same group are always on the same page and even when they are.....each patient is different.