Can anyone translate doctor speak?

[rosesixtyfive]

Hello, everyone,
Sam kicked the pseudomonas only to have it come back after going off of Tobi. So now he is on Cipro, Tobi, and Cayston, alternatively forever and ever.
I took him to get his RSV vaccine today, and the doctor said, "We can sterilize the lungs for these kids until damage is done, and then we can't anymore." I asked if he meant that nothing could be done for my child after damage occurs, and he said, no, the focus just shifts to keeping the bacteria under control. I assume he means that once damage occurs the bacteria can no longer be eradicated. Is that what he means?
I also wondered how do you prevent damage aside from compliance and CPT? Do you know damage is occuring or is it like pseudomonas, in which we had no indication anything was wrong?
Just don't like the sound of it, sterilizing the lungs...<img src="i/expressions/face-icon-small-confused.gif" border="0">

Thanks,
rosesixtyfive, mother of Sam (ddf508), 7 months old, and Robin (no CF), 4 years old

 

[rosesixtyfive]

Hello, everyone,
Sam kicked the pseudomonas only to have it come back after going off of Tobi. So now he is on Cipro, Tobi, and Cayston, alternatively forever and ever.
I took him to get his RSV vaccine today, and the doctor said, "We can sterilize the lungs for these kids until damage is done, and then we can't anymore." I asked if he meant that nothing could be done for my child after damage occurs, and he said, no, the focus just shifts to keeping the bacteria under control. I assume he means that once damage occurs the bacteria can no longer be eradicated. Is that what he means?
I also wondered how do you prevent damage aside from compliance and CPT? Do you know damage is occuring or is it like pseudomonas, in which we had no indication anything was wrong?
Just don't like the sound of it, sterilizing the lungs...<img src="i/expressions/face-icon-small-confused.gif" border="0">

Thanks,
rosesixtyfive, mother of Sam (ddf508), 7 months old, and Robin (no CF), 4 years old

 

[rosesixtyfive]

Hello, everyone,
Sam kicked the pseudomonas only to have it come back after going off of Tobi. So now he is on Cipro, Tobi, and Cayston, alternatively forever and ever.
I took him to get his RSV vaccine today, and the doctor said, "We can sterilize the lungs for these kids until damage is done, and then we can't anymore." I asked if he meant that nothing could be done for my child after damage occurs, and he said, no, the focus just shifts to keeping the bacteria under control. I assume he means that once damage occurs the bacteria can no longer be eradicated. Is that what he means?
I also wondered how do you prevent damage aside from compliance and CPT? Do you know damage is occuring or is it like pseudomonas, in which we had no indication anything was wrong?
Just don't like the sound of it, sterilizing the lungs...<img src="i/expressions/face-icon-small-confused.gif" border="0">

Thanks,
rosesixtyfive, mother of Sam (ddf508), 7 months old, and Robin (no CF), 4 years old

 

[rosesixtyfive]

Hello, everyone,
Sam kicked the pseudomonas only to have it come back after going off of Tobi. So now he is on Cipro, Tobi, and Cayston, alternatively forever and ever.
I took him to get his RSV vaccine today, and the doctor said, "We can sterilize the lungs for these kids until damage is done, and then we can't anymore." I asked if he meant that nothing could be done for my child after damage occurs, and he said, no, the focus just shifts to keeping the bacteria under control. I assume he means that once damage occurs the bacteria can no longer be eradicated. Is that what he means?
I also wondered how do you prevent damage aside from compliance and CPT? Do you know damage is occuring or is it like pseudomonas, in which we had no indication anything was wrong?
Just don't like the sound of it, sterilizing the lungs...<img src="i/expressions/face-icon-small-confused.gif" border="0">

Thanks,
rosesixtyfive, mother of Sam (ddf508), 7 months old, and Robin (no CF), 4 years old

 

[rosesixtyfive]

Hello, everyone,
<br />Sam kicked the pseudomonas only to have it come back after going off of Tobi. So now he is on Cipro, Tobi, and Cayston, alternatively forever and ever.
<br />I took him to get his RSV vaccine today, and the doctor said, "We can sterilize the lungs for these kids until damage is done, and then we can't anymore." I asked if he meant that nothing could be done for my child after damage occurs, and he said, no, the focus just shifts to keeping the bacteria under control. I assume he means that once damage occurs the bacteria can no longer be eradicated. Is that what he means?
<br />I also wondered how do you prevent damage aside from compliance and CPT? Do you know damage is occuring or is it like pseudomonas, in which we had no indication anything was wrong?
<br />Just don't like the sound of it, sterilizing the lungs...<img src="i/expressions/face-icon-small-confused.gif" border="0">
<br />
<br />Thanks,
<br />rosesixtyfive, mother of Sam (ddf508), 7 months old, and Robin (no CF), 4 years old

 

[Jana]

I think you understood that correctly. It's unlikely the bacteria will be eradicated at this point. The more the lungs are damaged, the better the environment for bacteria.

The lung damage really can't always be prevented, and the progression of it is unpredictable. However, compliance is your best way to fight it. Also, I've found it helps to respond to increased problems quickly rather than playing the game of wondering if it's bad enough to call the doctor or hoping it's really "no big deal." It's always better to be proactive.

I am sorry to hear Sam is struggling so much with pseudomonas. I think every cf patient understands the helpless feeling of finding another issue or treatment is in your life to stay. Stick with it, though. Those treatments can really help keep it under control. Hang in there!

 

[Jana]

I think you understood that correctly. It's unlikely the bacteria will be eradicated at this point. The more the lungs are damaged, the better the environment for bacteria.

The lung damage really can't always be prevented, and the progression of it is unpredictable. However, compliance is your best way to fight it. Also, I've found it helps to respond to increased problems quickly rather than playing the game of wondering if it's bad enough to call the doctor or hoping it's really "no big deal." It's always better to be proactive.

I am sorry to hear Sam is struggling so much with pseudomonas. I think every cf patient understands the helpless feeling of finding another issue or treatment is in your life to stay. Stick with it, though. Those treatments can really help keep it under control. Hang in there!

 

[Jana]

I think you understood that correctly. It's unlikely the bacteria will be eradicated at this point. The more the lungs are damaged, the better the environment for bacteria.

The lung damage really can't always be prevented, and the progression of it is unpredictable. However, compliance is your best way to fight it. Also, I've found it helps to respond to increased problems quickly rather than playing the game of wondering if it's bad enough to call the doctor or hoping it's really "no big deal." It's always better to be proactive.

I am sorry to hear Sam is struggling so much with pseudomonas. I think every cf patient understands the helpless feeling of finding another issue or treatment is in your life to stay. Stick with it, though. Those treatments can really help keep it under control. Hang in there!

 

[Jana]

I think you understood that correctly. It's unlikely the bacteria will be eradicated at this point. The more the lungs are damaged, the better the environment for bacteria.

The lung damage really can't always be prevented, and the progression of it is unpredictable. However, compliance is your best way to fight it. Also, I've found it helps to respond to increased problems quickly rather than playing the game of wondering if it's bad enough to call the doctor or hoping it's really "no big deal." It's always better to be proactive.

I am sorry to hear Sam is struggling so much with pseudomonas. I think every cf patient understands the helpless feeling of finding another issue or treatment is in your life to stay. Stick with it, though. Those treatments can really help keep it under control. Hang in there!

 

[Jana]

I think you understood that correctly. It's unlikely the bacteria will be eradicated at this point. The more the lungs are damaged, the better the environment for bacteria.
<br />
<br />The lung damage really can't always be prevented, and the progression of it is unpredictable. However, compliance is your best way to fight it. Also, I've found it helps to respond to increased problems quickly rather than playing the game of wondering if it's bad enough to call the doctor or hoping it's really "no big deal." It's always better to be proactive.
<br />
<br />I am sorry to hear Sam is struggling so much with pseudomonas. I think every cf patient understands the helpless feeling of finding another issue or treatment is in your life to stay. Stick with it, though. Those treatments can really help keep it under control. Hang in there!

 

[Jana]

Sorry--just read your post again, and I'm a bit confused. Are you saying the pseudomonas has not yet been symptomatic, but they're keeping him on antibiotic for it on a regular basis besides the month on/month off Tobi treatments?

 

[Jana]

Sorry--just read your post again, and I'm a bit confused. Are you saying the pseudomonas has not yet been symptomatic, but they're keeping him on antibiotic for it on a regular basis besides the month on/month off Tobi treatments?

 

[Jana]

Sorry--just read your post again, and I'm a bit confused. Are you saying the pseudomonas has not yet been symptomatic, but they're keeping him on antibiotic for it on a regular basis besides the month on/month off Tobi treatments?

 

[Jana]

Sorry--just read your post again, and I'm a bit confused. Are you saying the pseudomonas has not yet been symptomatic, but they're keeping him on antibiotic for it on a regular basis besides the month on/month off Tobi treatments?

 

[Jana]

Sorry--just read your post again, and I'm a bit confused. Are you saying the pseudomonas has not yet been symptomatic, but they're keeping him on antibiotic for it on a regular basis besides the month on/month off Tobi treatments?

 

[rosesixtyfive]

Jana,
He has had no symptoms, very little cough or runny nose, no pneumonia, feels great, he just cultures pseudomonas, so they are having him do Cipro for 10 days, and planning to keep him on Tobi and Cayston, for 28 days each with no breaks in between them, So basically, it sounds like they are going to keep him on these two inhaled drugs for a very long time, if not permanently.
Does this make sense?
Thanks,
rosesixtyfive

 

[rosesixtyfive]

Jana,
He has had no symptoms, very little cough or runny nose, no pneumonia, feels great, he just cultures pseudomonas, so they are having him do Cipro for 10 days, and planning to keep him on Tobi and Cayston, for 28 days each with no breaks in between them, So basically, it sounds like they are going to keep him on these two inhaled drugs for a very long time, if not permanently.
Does this make sense?
Thanks,
rosesixtyfive

 

[rosesixtyfive]

Jana,
He has had no symptoms, very little cough or runny nose, no pneumonia, feels great, he just cultures pseudomonas, so they are having him do Cipro for 10 days, and planning to keep him on Tobi and Cayston, for 28 days each with no breaks in between them, So basically, it sounds like they are going to keep him on these two inhaled drugs for a very long time, if not permanently.
Does this make sense?
Thanks,
rosesixtyfive

 

[rosesixtyfive]

Jana,
He has had no symptoms, very little cough or runny nose, no pneumonia, feels great, he just cultures pseudomonas, so they are having him do Cipro for 10 days, and planning to keep him on Tobi and Cayston, for 28 days each with no breaks in between them, So basically, it sounds like they are going to keep him on these two inhaled drugs for a very long time, if not permanently.
Does this make sense?
Thanks,
rosesixtyfive

 

[rosesixtyfive]

Jana,
<br />He has had no symptoms, very little cough or runny nose, no pneumonia, feels great, he just cultures pseudomonas, so they are having him do Cipro for 10 days, and planning to keep him on Tobi and Cayston, for 28 days each with no breaks in between them, So basically, it sounds like they are going to keep him on these two inhaled drugs for a very long time, if not permanently.
<br />Does this make sense?
<br />Thanks,
<br />rosesixtyfive