Is this normal?

T

TonyaH

Guest
How do you go from no history of admits and ivs, to three admits in 8 months? Until last November Andrew never needed anything but oral meds to clear up infections. Now, we are scheduled for him to be admitted again on Friday the 13th for a bronch and more ivs. His pfts are the lowest they have ever been.

If someone can explain a time when it took more than one or two rounds of ivs to get back to baseline, I'd like to hear about it. Did you get all the way back to baseline??? Were you able to recover and go a number of years before needing more ivs?
 
T

TonyaH

Guest
How do you go from no history of admits and ivs, to three admits in 8 months? Until last November Andrew never needed anything but oral meds to clear up infections. Now, we are scheduled for him to be admitted again on Friday the 13th for a bronch and more ivs. His pfts are the lowest they have ever been.

If someone can explain a time when it took more than one or two rounds of ivs to get back to baseline, I'd like to hear about it. Did you get all the way back to baseline??? Were you able to recover and go a number of years before needing more ivs?
 
T

TonyaH

Guest
How do you go from no history of admits and ivs, to three admits in 8 months? Until last November Andrew never needed anything but oral meds to clear up infections. Now, we are scheduled for him to be admitted again on Friday the 13th for a bronch and more ivs. His pfts are the lowest they have ever been.

If someone can explain a time when it took more than one or two rounds of ivs to get back to baseline, I'd like to hear about it. Did you get all the way back to baseline??? Were you able to recover and go a number of years before needing more ivs?
 
T

TonyaH

Guest
How do you go from no history of admits and ivs, to three admits in 8 months? Until last November Andrew never needed anything but oral meds to clear up infections. Now, we are scheduled for him to be admitted again on Friday the 13th for a bronch and more ivs. His pfts are the lowest they have ever been.

If someone can explain a time when it took more than one or two rounds of ivs to get back to baseline, I'd like to hear about it. Did you get all the way back to baseline??? Were you able to recover and go a number of years before needing more ivs?
 
T

TonyaH

Guest
How do you go from no history of admits and ivs, to three admits in 8 months? Until last November Andrew never needed anything but oral meds to clear up infections. Now, we are scheduled for him to be admitted again on Friday the 13th for a bronch and more ivs. His pfts are the lowest they have ever been.
<br />
<br />If someone can explain a time when it took more than one or two rounds of ivs to get back to baseline, I'd like to hear about it. Did you get all the way back to baseline??? Were you able to recover and go a number of years before needing more ivs?
 
L

lightNlife

New member
Sometimes that just happens. There are a LOT of factors that come into play. I had something similar happen. A couple years ago I had my worst year on record. I went from only 1 hospitalization a year to 1 every other month! It was terrible and frustrating.

Perhaps the bugs are in different airways than they have been before, or different sections of the lungs. That can make a difference. There's just no one reason that this happens. It just does.

When this started happening to me when I was a minor, my mom would get very worried and ask the CF nurse "why is this happening? What went wrong?" The nurse would lean in close to us and say "this is just CF. This is what CF does."
To this day I have to remind myself that no matter how well I'm taking care of myself, although it does help when I do get sick, there's nothing I can do to fully prevent myself from getting an infection or some other complication.

This is what CF does.
 
L

lightNlife

New member
Sometimes that just happens. There are a LOT of factors that come into play. I had something similar happen. A couple years ago I had my worst year on record. I went from only 1 hospitalization a year to 1 every other month! It was terrible and frustrating.

Perhaps the bugs are in different airways than they have been before, or different sections of the lungs. That can make a difference. There's just no one reason that this happens. It just does.

When this started happening to me when I was a minor, my mom would get very worried and ask the CF nurse "why is this happening? What went wrong?" The nurse would lean in close to us and say "this is just CF. This is what CF does."
To this day I have to remind myself that no matter how well I'm taking care of myself, although it does help when I do get sick, there's nothing I can do to fully prevent myself from getting an infection or some other complication.

This is what CF does.
 
L

lightNlife

New member
Sometimes that just happens. There are a LOT of factors that come into play. I had something similar happen. A couple years ago I had my worst year on record. I went from only 1 hospitalization a year to 1 every other month! It was terrible and frustrating.

Perhaps the bugs are in different airways than they have been before, or different sections of the lungs. That can make a difference. There's just no one reason that this happens. It just does.

When this started happening to me when I was a minor, my mom would get very worried and ask the CF nurse "why is this happening? What went wrong?" The nurse would lean in close to us and say "this is just CF. This is what CF does."
To this day I have to remind myself that no matter how well I'm taking care of myself, although it does help when I do get sick, there's nothing I can do to fully prevent myself from getting an infection or some other complication.

This is what CF does.
 
L

lightNlife

New member
Sometimes that just happens. There are a LOT of factors that come into play. I had something similar happen. A couple years ago I had my worst year on record. I went from only 1 hospitalization a year to 1 every other month! It was terrible and frustrating.

Perhaps the bugs are in different airways than they have been before, or different sections of the lungs. That can make a difference. There's just no one reason that this happens. It just does.

When this started happening to me when I was a minor, my mom would get very worried and ask the CF nurse "why is this happening? What went wrong?" The nurse would lean in close to us and say "this is just CF. This is what CF does."
To this day I have to remind myself that no matter how well I'm taking care of myself, although it does help when I do get sick, there's nothing I can do to fully prevent myself from getting an infection or some other complication.

This is what CF does.
 
L

lightNlife

New member
Sometimes that just happens. There are a LOT of factors that come into play. I had something similar happen. A couple years ago I had my worst year on record. I went from only 1 hospitalization a year to 1 every other month! It was terrible and frustrating.
<br />
<br />Perhaps the bugs are in different airways than they have been before, or different sections of the lungs. That can make a difference. There's just no one reason that this happens. It just does.
<br />
<br />When this started happening to me when I was a minor, my mom would get very worried and ask the CF nurse "why is this happening? What went wrong?" The nurse would lean in close to us and say "this is just CF. This is what CF does."
<br />To this day I have to remind myself that no matter how well I'm taking care of myself, although it does help when I do get sick, there's nothing I can do to fully prevent myself from getting an infection or some other complication.
<br />
<br />This is what CF does.
 
N

NoExcuses

New member
The type of bacteria that CFers have such as PA or MRSA are very virulent. Sometimes one round of antibiotics doesn't improve things as much as we would hope or the right combination of IV's was chosen the first time around.

A bronch makes me think it's the 2nd option. Sounds like the docs don't think that they're totaly aware of what bacteria is causing the infection so they want to get the most accurate picture - and that's a bronch.

In terms of CF progression, it happens to everyone at different types and at different rates. This is why average life expectancy is 36 years in the US - lung deterioration happens. <img src="i/expressions/face-icon-small-sad.gif" border="0">

But I have a feeling the bronch will help a ton in identifying the bacteria and therefore getting your son on the right IV meds.

Best of luck.
 
N

NoExcuses

New member
The type of bacteria that CFers have such as PA or MRSA are very virulent. Sometimes one round of antibiotics doesn't improve things as much as we would hope or the right combination of IV's was chosen the first time around.

A bronch makes me think it's the 2nd option. Sounds like the docs don't think that they're totaly aware of what bacteria is causing the infection so they want to get the most accurate picture - and that's a bronch.

In terms of CF progression, it happens to everyone at different types and at different rates. This is why average life expectancy is 36 years in the US - lung deterioration happens. <img src="i/expressions/face-icon-small-sad.gif" border="0">

But I have a feeling the bronch will help a ton in identifying the bacteria and therefore getting your son on the right IV meds.

Best of luck.
 
N

NoExcuses

New member
The type of bacteria that CFers have such as PA or MRSA are very virulent. Sometimes one round of antibiotics doesn't improve things as much as we would hope or the right combination of IV's was chosen the first time around.

A bronch makes me think it's the 2nd option. Sounds like the docs don't think that they're totaly aware of what bacteria is causing the infection so they want to get the most accurate picture - and that's a bronch.

In terms of CF progression, it happens to everyone at different types and at different rates. This is why average life expectancy is 36 years in the US - lung deterioration happens. <img src="i/expressions/face-icon-small-sad.gif" border="0">

But I have a feeling the bronch will help a ton in identifying the bacteria and therefore getting your son on the right IV meds.

Best of luck.
 
N

NoExcuses

New member
The type of bacteria that CFers have such as PA or MRSA are very virulent. Sometimes one round of antibiotics doesn't improve things as much as we would hope or the right combination of IV's was chosen the first time around.

A bronch makes me think it's the 2nd option. Sounds like the docs don't think that they're totaly aware of what bacteria is causing the infection so they want to get the most accurate picture - and that's a bronch.

In terms of CF progression, it happens to everyone at different types and at different rates. This is why average life expectancy is 36 years in the US - lung deterioration happens. <img src="i/expressions/face-icon-small-sad.gif" border="0">

But I have a feeling the bronch will help a ton in identifying the bacteria and therefore getting your son on the right IV meds.

Best of luck.
 
N

NoExcuses

New member
The type of bacteria that CFers have such as PA or MRSA are very virulent. Sometimes one round of antibiotics doesn't improve things as much as we would hope or the right combination of IV's was chosen the first time around.
<br />
<br />A bronch makes me think it's the 2nd option. Sounds like the docs don't think that they're totaly aware of what bacteria is causing the infection so they want to get the most accurate picture - and that's a bronch.
<br />
<br />In terms of CF progression, it happens to everyone at different types and at different rates. This is why average life expectancy is 36 years in the US - lung deterioration happens. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />But I have a feeling the bronch will help a ton in identifying the bacteria and therefore getting your son on the right IV meds.
<br />
<br />Best of luck.
 
J

JORDYSMOM

New member
Tonya, I don't have anything to add, but I want you to know that I'm thinking of you. I'm sorry Andrew is going back in. I know this is frustrating for you and him. I hope this bronch shows the docs what they need to do to help him feel better and breathe easier. If you need to talk/vent PM me.<img src="i/expressions/heart.gif" border="0">

Stacey
 
J

JORDYSMOM

New member
Tonya, I don't have anything to add, but I want you to know that I'm thinking of you. I'm sorry Andrew is going back in. I know this is frustrating for you and him. I hope this bronch shows the docs what they need to do to help him feel better and breathe easier. If you need to talk/vent PM me.<img src="i/expressions/heart.gif" border="0">

Stacey
 
J

JORDYSMOM

New member
Tonya, I don't have anything to add, but I want you to know that I'm thinking of you. I'm sorry Andrew is going back in. I know this is frustrating for you and him. I hope this bronch shows the docs what they need to do to help him feel better and breathe easier. If you need to talk/vent PM me.<img src="i/expressions/heart.gif" border="0">

Stacey
 
J

JORDYSMOM

New member
Tonya, I don't have anything to add, but I want you to know that I'm thinking of you. I'm sorry Andrew is going back in. I know this is frustrating for you and him. I hope this bronch shows the docs what they need to do to help him feel better and breathe easier. If you need to talk/vent PM me.<img src="i/expressions/heart.gif" border="0">

Stacey
 
J

JORDYSMOM

New member
Tonya, I don't have anything to add, but I want you to know that I'm thinking of you. I'm sorry Andrew is going back in. I know this is frustrating for you and him. I hope this bronch shows the docs what they need to do to help him feel better and breathe easier. If you need to talk/vent PM me.<img src="i/expressions/heart.gif" border="0">
<br />
<br />Stacey
 
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