i'm going to just put this out there...*small update*

[Diane]

i'm going to just put this out there...

I'm not saying this to scare you but, this sounds almost exactly what happened to me after my sinus surgery. Within a day or two of the surgery i started with a cough, then low grade fevers and body aches, then i just felt like crap every day and no matter what antibiotic i was on it would work for about a week and then the same symptoms would come right back. I could not imagine why this was suddenly happening, because i was so healthy and never needed much in the way of antibiotics. I kept telling the Dr. somethings got to be wrong other than the fact that i have cf, etc.... And finally they checked my cultures and it turned out i had cepacia. I was upset and relieved. I was relieved to know why this was all going on, but had no idea what cepacia was and didnt know what to do next. I was hospitalized for 2 weeks of iv's and felt better, and have since found ways to deal with it. ( it's been 11 years now) I hope they can find out whats going on with you because i know what its like to feel like crap and not know what the heck is going on.

 

[Diane]

i'm going to just put this out there...

I'm not saying this to scare you but, this sounds almost exactly what happened to me after my sinus surgery. Within a day or two of the surgery i started with a cough, then low grade fevers and body aches, then i just felt like crap every day and no matter what antibiotic i was on it would work for about a week and then the same symptoms would come right back. I could not imagine why this was suddenly happening, because i was so healthy and never needed much in the way of antibiotics. I kept telling the Dr. somethings got to be wrong other than the fact that i have cf, etc.... And finally they checked my cultures and it turned out i had cepacia. I was upset and relieved. I was relieved to know why this was all going on, but had no idea what cepacia was and didnt know what to do next. I was hospitalized for 2 weeks of iv's and felt better, and have since found ways to deal with it. ( it's been 11 years now) I hope they can find out whats going on with you because i know what its like to feel like crap and not know what the heck is going on.

 

[Diane]

i'm going to just put this out there...

I'm not saying this to scare you but, this sounds almost exactly what happened to me after my sinus surgery. Within a day or two of the surgery i started with a cough, then low grade fevers and body aches, then i just felt like crap every day and no matter what antibiotic i was on it would work for about a week and then the same symptoms would come right back. I could not imagine why this was suddenly happening, because i was so healthy and never needed much in the way of antibiotics. I kept telling the Dr. somethings got to be wrong other than the fact that i have cf, etc.... And finally they checked my cultures and it turned out i had cepacia. I was upset and relieved. I was relieved to know why this was all going on, but had no idea what cepacia was and didnt know what to do next. I was hospitalized for 2 weeks of iv's and felt better, and have since found ways to deal with it. ( it's been 11 years now) I hope they can find out whats going on with you because i know what its like to feel like crap and not know what the heck is going on.

 

[Diane]

i'm going to just put this out there...

I'm not saying this to scare you but, this sounds almost exactly what happened to me after my sinus surgery. Within a day or two of the surgery i started with a cough, then low grade fevers and body aches, then i just felt like crap every day and no matter what antibiotic i was on it would work for about a week and then the same symptoms would come right back. I could not imagine why this was suddenly happening, because i was so healthy and never needed much in the way of antibiotics. I kept telling the Dr. somethings got to be wrong other than the fact that i have cf, etc.... And finally they checked my cultures and it turned out i had cepacia. I was upset and relieved. I was relieved to know why this was all going on, but had no idea what cepacia was and didnt know what to do next. I was hospitalized for 2 weeks of iv's and felt better, and have since found ways to deal with it. ( it's been 11 years now) I hope they can find out whats going on with you because i know what its like to feel like crap and not know what the heck is going on.

 

[Diane]

i'm going to just put this out there...

I'm not saying this to scare you but, this sounds almost exactly what happened to me after my sinus surgery. Within a day or two of the surgery i started with a cough, then low grade fevers and body aches, then i just felt like crap every day and no matter what antibiotic i was on it would work for about a week and then the same symptoms would come right back. I could not imagine why this was suddenly happening, because i was so healthy and never needed much in the way of antibiotics. I kept telling the Dr. somethings got to be wrong other than the fact that i have cf, etc.... And finally they checked my cultures and it turned out i had cepacia. I was upset and relieved. I was relieved to know why this was all going on, but had no idea what cepacia was and didnt know what to do next. I was hospitalized for 2 weeks of iv's and felt better, and have since found ways to deal with it. ( it's been 11 years now) I hope they can find out whats going on with you because i know what its like to feel like crap and not know what the heck is going on.

 

[krisgabes]

So here's the low down so far. I've been questioning my clinic like crazy the past few days.

1.I asked about the B. cepacia and the nurse claimed that I didn't have it (she just answered "no" w/o checking my chart, so I don't know how much of that I believe).

2. I had a CT scan last Friday and it showed chronic sinus infection, narrowing of the nasal passages and a deviated septum. My chest showed an infection in my upper left lobe of my lung (my left lung always gives me a problem).

So my next strategy is an allergy test for mold, and I'm sending my records to St. Vincent's Hospital CF Center in Manhattan and I'll go see their practice. I'm also going to make an appointment for an ear, nose and throat doctor tomorrow. I will keep you all posted w/ more updates as they come. Thank you so much again for all your help!!!

 

[krisgabes]

So here's the low down so far. I've been questioning my clinic like crazy the past few days.

1.I asked about the B. cepacia and the nurse claimed that I didn't have it (she just answered "no" w/o checking my chart, so I don't know how much of that I believe).

2. I had a CT scan last Friday and it showed chronic sinus infection, narrowing of the nasal passages and a deviated septum. My chest showed an infection in my upper left lobe of my lung (my left lung always gives me a problem).

So my next strategy is an allergy test for mold, and I'm sending my records to St. Vincent's Hospital CF Center in Manhattan and I'll go see their practice. I'm also going to make an appointment for an ear, nose and throat doctor tomorrow. I will keep you all posted w/ more updates as they come. Thank you so much again for all your help!!!

 

[krisgabes]

So here's the low down so far. I've been questioning my clinic like crazy the past few days.

1.I asked about the B. cepacia and the nurse claimed that I didn't have it (she just answered "no" w/o checking my chart, so I don't know how much of that I believe).

2. I had a CT scan last Friday and it showed chronic sinus infection, narrowing of the nasal passages and a deviated septum. My chest showed an infection in my upper left lobe of my lung (my left lung always gives me a problem).

So my next strategy is an allergy test for mold, and I'm sending my records to St. Vincent's Hospital CF Center in Manhattan and I'll go see their practice. I'm also going to make an appointment for an ear, nose and throat doctor tomorrow. I will keep you all posted w/ more updates as they come. Thank you so much again for all your help!!!

 

[krisgabes]

So here's the low down so far. I've been questioning my clinic like crazy the past few days.

1.I asked about the B. cepacia and the nurse claimed that I didn't have it (she just answered "no" w/o checking my chart, so I don't know how much of that I believe).

2. I had a CT scan last Friday and it showed chronic sinus infection, narrowing of the nasal passages and a deviated septum. My chest showed an infection in my upper left lobe of my lung (my left lung always gives me a problem).

So my next strategy is an allergy test for mold, and I'm sending my records to St. Vincent's Hospital CF Center in Manhattan and I'll go see their practice. I'm also going to make an appointment for an ear, nose and throat doctor tomorrow. I will keep you all posted w/ more updates as they come. Thank you so much again for all your help!!!

 

[krisgabes]

So here's the low down so far. I've been questioning my clinic like crazy the past few days.
<br />
<br />1.I asked about the B. cepacia and the nurse claimed that I didn't have it (she just answered "no" w/o checking my chart, so I don't know how much of that I believe).
<br />
<br />2. I had a CT scan last Friday and it showed chronic sinus infection, narrowing of the nasal passages and a deviated septum. My chest showed an infection in my upper left lobe of my lung (my left lung always gives me a problem).
<br />
<br />So my next strategy is an allergy test for mold, and I'm sending my records to St. Vincent's Hospital CF Center in Manhattan and I'll go see their practice. I'm also going to make an appointment for an ear, nose and throat doctor tomorrow. I will keep you all posted w/ more updates as they come. Thank you so much again for all your help!!!

 

[semperfiohana]

just out of curiosity, are you going to a cf accredited clinic? it almost sounds like your doc doesn't know much about cf or just doesn't feel like researching to see what more he can do for you. i don't have any advice for you, but i would be a complete pain in his ass until he comes up with something that is going to work definetly and clear you up for good!!! good luck!!

 

[semperfiohana]

just out of curiosity, are you going to a cf accredited clinic? it almost sounds like your doc doesn't know much about cf or just doesn't feel like researching to see what more he can do for you. i don't have any advice for you, but i would be a complete pain in his ass until he comes up with something that is going to work definetly and clear you up for good!!! good luck!!

 

[semperfiohana]

just out of curiosity, are you going to a cf accredited clinic? it almost sounds like your doc doesn't know much about cf or just doesn't feel like researching to see what more he can do for you. i don't have any advice for you, but i would be a complete pain in his ass until he comes up with something that is going to work definetly and clear you up for good!!! good luck!!

 

[semperfiohana]

just out of curiosity, are you going to a cf accredited clinic? it almost sounds like your doc doesn't know much about cf or just doesn't feel like researching to see what more he can do for you. i don't have any advice for you, but i would be a complete pain in his ass until he comes up with something that is going to work definetly and clear you up for good!!! good luck!!

 

[semperfiohana]

just out of curiosity, are you going to a cf accredited clinic? it almost sounds like your doc doesn't know much about cf or just doesn't feel like researching to see what more he can do for you. i don't have any advice for you, but i would be a complete pain in his ass until he comes up with something that is going to work definetly and clear you up for good!!! good luck!!

 

[krisgabes]

They are listed as the Adult piece to the CF program that they have set up here. The only other ones are in Manhattan. Technically he is a pulmonologist but everyone who is at the peds program gets sent to them as adults.

Basically they don't want to do the research in order to find out what is going on. It's easier for them to just keep throwing someone on IV's and see how they feel after. It's really sad.

Thank you for the luck!! <img src="i/expressions/iv.gif" border="0">

 

[krisgabes]

They are listed as the Adult piece to the CF program that they have set up here. The only other ones are in Manhattan. Technically he is a pulmonologist but everyone who is at the peds program gets sent to them as adults.

Basically they don't want to do the research in order to find out what is going on. It's easier for them to just keep throwing someone on IV's and see how they feel after. It's really sad.

Thank you for the luck!! <img src="i/expressions/iv.gif" border="0">

 

[krisgabes]

They are listed as the Adult piece to the CF program that they have set up here. The only other ones are in Manhattan. Technically he is a pulmonologist but everyone who is at the peds program gets sent to them as adults.

Basically they don't want to do the research in order to find out what is going on. It's easier for them to just keep throwing someone on IV's and see how they feel after. It's really sad.

Thank you for the luck!! <img src="i/expressions/iv.gif" border="0">

 

[krisgabes]

They are listed as the Adult piece to the CF program that they have set up here. The only other ones are in Manhattan. Technically he is a pulmonologist but everyone who is at the peds program gets sent to them as adults.

Basically they don't want to do the research in order to find out what is going on. It's easier for them to just keep throwing someone on IV's and see how they feel after. It's really sad.

Thank you for the luck!! <img src="i/expressions/iv.gif" border="0">

 

[krisgabes]

They are listed as the Adult piece to the CF program that they have set up here. The only other ones are in Manhattan. Technically he is a pulmonologist but everyone who is at the peds program gets sent to them as adults.
<br />
<br />Basically they don't want to do the research in order to find out what is going on. It's easier for them to just keep throwing someone on IV's and see how they feel after. It's really sad.
<br />
<br />Thank you for the luck!! <img src="i/expressions/iv.gif" border="0">