Need some help with dealing with all this...

C

catboogie

New member
couple of things occurred to me reading your post (forgive a bit of repetition.)

first, it is entirely normal for fev1 to take a while to recover after IV antibiotics. generally my doctors like to see the fev1 starting to go up before i'm off the meds, but it has taken me as long as several months to get back to baseline, depending on what all is going on.

does your daughter have an asthma component to her CF? (i noticed you said she was on steroids.) asthma, i believe, can cause greater fluctuation in fev1, and can make it look falsely low. (i think.) it sounds like her numbers have been pretty steady in the past, so this may not relate to her. but cf is a disease of change, and new patterns emerge all the time.

lastly, if your daughter is still not feeling 100% or if her numbers aren't bouncing back in a couple of months, you might want to push for another round of different IV antibiotics. i've found that being aggressive is the best way to deal with this disease. losing precious lung function is a lot of times preventable with more aggressive treatment. (not always, unfortunately.) doing as much as possible while she is young will help her to have that much more of an edge (both in terms of her numbers and her willingness to continue to treat her CF aggressively) into adulthood.

good luck!
 
C

catboogie

New member
couple of things occurred to me reading your post (forgive a bit of repetition.)

first, it is entirely normal for fev1 to take a while to recover after IV antibiotics. generally my doctors like to see the fev1 starting to go up before i'm off the meds, but it has taken me as long as several months to get back to baseline, depending on what all is going on.

does your daughter have an asthma component to her CF? (i noticed you said she was on steroids.) asthma, i believe, can cause greater fluctuation in fev1, and can make it look falsely low. (i think.) it sounds like her numbers have been pretty steady in the past, so this may not relate to her. but cf is a disease of change, and new patterns emerge all the time.

lastly, if your daughter is still not feeling 100% or if her numbers aren't bouncing back in a couple of months, you might want to push for another round of different IV antibiotics. i've found that being aggressive is the best way to deal with this disease. losing precious lung function is a lot of times preventable with more aggressive treatment. (not always, unfortunately.) doing as much as possible while she is young will help her to have that much more of an edge (both in terms of her numbers and her willingness to continue to treat her CF aggressively) into adulthood.

good luck!
 
C

catboogie

New member
couple of things occurred to me reading your post (forgive a bit of repetition.)

first, it is entirely normal for fev1 to take a while to recover after IV antibiotics. generally my doctors like to see the fev1 starting to go up before i'm off the meds, but it has taken me as long as several months to get back to baseline, depending on what all is going on.

does your daughter have an asthma component to her CF? (i noticed you said she was on steroids.) asthma, i believe, can cause greater fluctuation in fev1, and can make it look falsely low. (i think.) it sounds like her numbers have been pretty steady in the past, so this may not relate to her. but cf is a disease of change, and new patterns emerge all the time.

lastly, if your daughter is still not feeling 100% or if her numbers aren't bouncing back in a couple of months, you might want to push for another round of different IV antibiotics. i've found that being aggressive is the best way to deal with this disease. losing precious lung function is a lot of times preventable with more aggressive treatment. (not always, unfortunately.) doing as much as possible while she is young will help her to have that much more of an edge (both in terms of her numbers and her willingness to continue to treat her CF aggressively) into adulthood.

good luck!
 
C

catboogie

New member
couple of things occurred to me reading your post (forgive a bit of repetition.)

first, it is entirely normal for fev1 to take a while to recover after IV antibiotics. generally my doctors like to see the fev1 starting to go up before i'm off the meds, but it has taken me as long as several months to get back to baseline, depending on what all is going on.

does your daughter have an asthma component to her CF? (i noticed you said she was on steroids.) asthma, i believe, can cause greater fluctuation in fev1, and can make it look falsely low. (i think.) it sounds like her numbers have been pretty steady in the past, so this may not relate to her. but cf is a disease of change, and new patterns emerge all the time.

lastly, if your daughter is still not feeling 100% or if her numbers aren't bouncing back in a couple of months, you might want to push for another round of different IV antibiotics. i've found that being aggressive is the best way to deal with this disease. losing precious lung function is a lot of times preventable with more aggressive treatment. (not always, unfortunately.) doing as much as possible while she is young will help her to have that much more of an edge (both in terms of her numbers and her willingness to continue to treat her CF aggressively) into adulthood.

good luck!
 
C

catboogie

New member
couple of things occurred to me reading your post (forgive a bit of repetition.)

first, it is entirely normal for fev1 to take a while to recover after IV antibiotics. generally my doctors like to see the fev1 starting to go up before i'm off the meds, but it has taken me as long as several months to get back to baseline, depending on what all is going on.

does your daughter have an asthma component to her CF? (i noticed you said she was on steroids.) asthma, i believe, can cause greater fluctuation in fev1, and can make it look falsely low. (i think.) it sounds like her numbers have been pretty steady in the past, so this may not relate to her. but cf is a disease of change, and new patterns emerge all the time.

lastly, if your daughter is still not feeling 100% or if her numbers aren't bouncing back in a couple of months, you might want to push for another round of different IV antibiotics. i've found that being aggressive is the best way to deal with this disease. losing precious lung function is a lot of times preventable with more aggressive treatment. (not always, unfortunately.) doing as much as possible while she is young will help her to have that much more of an edge (both in terms of her numbers and her willingness to continue to treat her CF aggressively) into adulthood.

good luck!
 
M

mom2lillian

New member
Renee-others have done a great job addressing the issue of your daughter so I just wanted to mention YOU! Sometimes it can be so hard dealing with all of this, and you have a full plate already. Have you thought of talking with a counselor or trying some anxiety meds? Taking care of otehrs can take a toll on you and it sounds like you may need a bit of help adjusting, especially since you have a hard time letting out your emotions and are in a state of extremely high anxiety right now. Perhaps even just somethign to help you sleep! The way you describe yourself is how I felt after being diagnosed with CF and I got ambien to help me sleep for a bit and shortly thereafter started taking paxil to help calm anxiety. I ahve since switched to excercise adn counseling to help with my anxiety so you dont have to be on them forever but it can help in times of acute stress that overwhelms you.

Also, I am sure your daughter is a very smart girl, I wonder what she might be feeling/thinking about htis drop, not doubt it might be scary to her and the suppression of your feelings might leave her thinkign she needs to suppress hers when she realy might have alot of thougts and questions. Just a thought. It might be good for one of you to see if she has any ?'s or maybe the counselor or social worker at yoru clinic.

take care of yourself
 
M

mom2lillian

New member
Renee-others have done a great job addressing the issue of your daughter so I just wanted to mention YOU! Sometimes it can be so hard dealing with all of this, and you have a full plate already. Have you thought of talking with a counselor or trying some anxiety meds? Taking care of otehrs can take a toll on you and it sounds like you may need a bit of help adjusting, especially since you have a hard time letting out your emotions and are in a state of extremely high anxiety right now. Perhaps even just somethign to help you sleep! The way you describe yourself is how I felt after being diagnosed with CF and I got ambien to help me sleep for a bit and shortly thereafter started taking paxil to help calm anxiety. I ahve since switched to excercise adn counseling to help with my anxiety so you dont have to be on them forever but it can help in times of acute stress that overwhelms you.

Also, I am sure your daughter is a very smart girl, I wonder what she might be feeling/thinking about htis drop, not doubt it might be scary to her and the suppression of your feelings might leave her thinkign she needs to suppress hers when she realy might have alot of thougts and questions. Just a thought. It might be good for one of you to see if she has any ?'s or maybe the counselor or social worker at yoru clinic.

take care of yourself
 
M

mom2lillian

New member
Renee-others have done a great job addressing the issue of your daughter so I just wanted to mention YOU! Sometimes it can be so hard dealing with all of this, and you have a full plate already. Have you thought of talking with a counselor or trying some anxiety meds? Taking care of otehrs can take a toll on you and it sounds like you may need a bit of help adjusting, especially since you have a hard time letting out your emotions and are in a state of extremely high anxiety right now. Perhaps even just somethign to help you sleep! The way you describe yourself is how I felt after being diagnosed with CF and I got ambien to help me sleep for a bit and shortly thereafter started taking paxil to help calm anxiety. I ahve since switched to excercise adn counseling to help with my anxiety so you dont have to be on them forever but it can help in times of acute stress that overwhelms you.

Also, I am sure your daughter is a very smart girl, I wonder what she might be feeling/thinking about htis drop, not doubt it might be scary to her and the suppression of your feelings might leave her thinkign she needs to suppress hers when she realy might have alot of thougts and questions. Just a thought. It might be good for one of you to see if she has any ?'s or maybe the counselor or social worker at yoru clinic.

take care of yourself
 
M

mom2lillian

New member
Renee-others have done a great job addressing the issue of your daughter so I just wanted to mention YOU! Sometimes it can be so hard dealing with all of this, and you have a full plate already. Have you thought of talking with a counselor or trying some anxiety meds? Taking care of otehrs can take a toll on you and it sounds like you may need a bit of help adjusting, especially since you have a hard time letting out your emotions and are in a state of extremely high anxiety right now. Perhaps even just somethign to help you sleep! The way you describe yourself is how I felt after being diagnosed with CF and I got ambien to help me sleep for a bit and shortly thereafter started taking paxil to help calm anxiety. I ahve since switched to excercise adn counseling to help with my anxiety so you dont have to be on them forever but it can help in times of acute stress that overwhelms you.

Also, I am sure your daughter is a very smart girl, I wonder what she might be feeling/thinking about htis drop, not doubt it might be scary to her and the suppression of your feelings might leave her thinkign she needs to suppress hers when she realy might have alot of thougts and questions. Just a thought. It might be good for one of you to see if she has any ?'s or maybe the counselor or social worker at yoru clinic.

take care of yourself
 
M

mom2lillian

New member
Renee-others have done a great job addressing the issue of your daughter so I just wanted to mention YOU! Sometimes it can be so hard dealing with all of this, and you have a full plate already. Have you thought of talking with a counselor or trying some anxiety meds? Taking care of otehrs can take a toll on you and it sounds like you may need a bit of help adjusting, especially since you have a hard time letting out your emotions and are in a state of extremely high anxiety right now. Perhaps even just somethign to help you sleep! The way you describe yourself is how I felt after being diagnosed with CF and I got ambien to help me sleep for a bit and shortly thereafter started taking paxil to help calm anxiety. I ahve since switched to excercise adn counseling to help with my anxiety so you dont have to be on them forever but it can help in times of acute stress that overwhelms you.

Also, I am sure your daughter is a very smart girl, I wonder what she might be feeling/thinking about htis drop, not doubt it might be scary to her and the suppression of your feelings might leave her thinkign she needs to suppress hers when she realy might have alot of thougts and questions. Just a thought. It might be good for one of you to see if she has any ?'s or maybe the counselor or social worker at yoru clinic.

take care of yourself
 
R

ReneeP

New member
Well, it has been 2 months since my original post and we went back to the CF Center today for a checkup... I have to say this was one of the best days of my life...

Keep in mind, prior to getting sick the last time Kaitlyn's FEV1 was 103%...

In December, two weeks after getting out of the hospital and off IV's, her FEV1 was 81% and I was totally freaking out...

Today, her FEV1 was 109%!!!! Even better than it had been before getting sick. And she did 5 different ones today and they were all pretty consistant... 103% to 109%...

Oh, and she also gained 9 lbs in the last 2 months!!! Of course, her being 13 and all, she thinks that's a bad thing... but the doctor and I are thrilled... She is at a very good weight (115 lbs and 5 ft tall)...

I am so relieved. I really had given up hope that she would ever reach 100% again. And judging by the look on her face today, I think she had too. She was soooo happy. She wanted to keep doing more and more so she could keep getting higher numbers. They stopped her after 5... :)

And to add to the already wonderful day, my other daughter's FEV1 went from 116% to 124%... she will be 9 next month and other than several sinus surgeries, she's never really been sick. But she is very tiny and we are hoping for a growth spurt soon!

All and all it was a perfect visit! Just wanted to share my joy and maybe encourage others who are where I was before. :)
 
R

ReneeP

New member
Well, it has been 2 months since my original post and we went back to the CF Center today for a checkup... I have to say this was one of the best days of my life...

Keep in mind, prior to getting sick the last time Kaitlyn's FEV1 was 103%...

In December, two weeks after getting out of the hospital and off IV's, her FEV1 was 81% and I was totally freaking out...

Today, her FEV1 was 109%!!!! Even better than it had been before getting sick. And she did 5 different ones today and they were all pretty consistant... 103% to 109%...

Oh, and she also gained 9 lbs in the last 2 months!!! Of course, her being 13 and all, she thinks that's a bad thing... but the doctor and I are thrilled... She is at a very good weight (115 lbs and 5 ft tall)...

I am so relieved. I really had given up hope that she would ever reach 100% again. And judging by the look on her face today, I think she had too. She was soooo happy. She wanted to keep doing more and more so she could keep getting higher numbers. They stopped her after 5... :)

And to add to the already wonderful day, my other daughter's FEV1 went from 116% to 124%... she will be 9 next month and other than several sinus surgeries, she's never really been sick. But she is very tiny and we are hoping for a growth spurt soon!

All and all it was a perfect visit! Just wanted to share my joy and maybe encourage others who are where I was before. :)
 
R

ReneeP

New member
Well, it has been 2 months since my original post and we went back to the CF Center today for a checkup... I have to say this was one of the best days of my life...

Keep in mind, prior to getting sick the last time Kaitlyn's FEV1 was 103%...

In December, two weeks after getting out of the hospital and off IV's, her FEV1 was 81% and I was totally freaking out...

Today, her FEV1 was 109%!!!! Even better than it had been before getting sick. And she did 5 different ones today and they were all pretty consistant... 103% to 109%...

Oh, and she also gained 9 lbs in the last 2 months!!! Of course, her being 13 and all, she thinks that's a bad thing... but the doctor and I are thrilled... She is at a very good weight (115 lbs and 5 ft tall)...

I am so relieved. I really had given up hope that she would ever reach 100% again. And judging by the look on her face today, I think she had too. She was soooo happy. She wanted to keep doing more and more so she could keep getting higher numbers. They stopped her after 5... :)

And to add to the already wonderful day, my other daughter's FEV1 went from 116% to 124%... she will be 9 next month and other than several sinus surgeries, she's never really been sick. But she is very tiny and we are hoping for a growth spurt soon!

All and all it was a perfect visit! Just wanted to share my joy and maybe encourage others who are where I was before. :)
 
R

ReneeP

New member
Well, it has been 2 months since my original post and we went back to the CF Center today for a checkup... I have to say this was one of the best days of my life...

Keep in mind, prior to getting sick the last time Kaitlyn's FEV1 was 103%...

In December, two weeks after getting out of the hospital and off IV's, her FEV1 was 81% and I was totally freaking out...

Today, her FEV1 was 109%!!!! Even better than it had been before getting sick. And she did 5 different ones today and they were all pretty consistant... 103% to 109%...

Oh, and she also gained 9 lbs in the last 2 months!!! Of course, her being 13 and all, she thinks that's a bad thing... but the doctor and I are thrilled... She is at a very good weight (115 lbs and 5 ft tall)...

I am so relieved. I really had given up hope that she would ever reach 100% again. And judging by the look on her face today, I think she had too. She was soooo happy. She wanted to keep doing more and more so she could keep getting higher numbers. They stopped her after 5... :)

And to add to the already wonderful day, my other daughter's FEV1 went from 116% to 124%... she will be 9 next month and other than several sinus surgeries, she's never really been sick. But she is very tiny and we are hoping for a growth spurt soon!

All and all it was a perfect visit! Just wanted to share my joy and maybe encourage others who are where I was before. :)
 
R

ReneeP

New member
Well, it has been 2 months since my original post and we went back to the CF Center today for a checkup... I have to say this was one of the best days of my life...

Keep in mind, prior to getting sick the last time Kaitlyn's FEV1 was 103%...

In December, two weeks after getting out of the hospital and off IV's, her FEV1 was 81% and I was totally freaking out...

Today, her FEV1 was 109%!!!! Even better than it had been before getting sick. And she did 5 different ones today and they were all pretty consistant... 103% to 109%...

Oh, and she also gained 9 lbs in the last 2 months!!! Of course, her being 13 and all, she thinks that's a bad thing... but the doctor and I are thrilled... She is at a very good weight (115 lbs and 5 ft tall)...

I am so relieved. I really had given up hope that she would ever reach 100% again. And judging by the look on her face today, I think she had too. She was soooo happy. She wanted to keep doing more and more so she could keep getting higher numbers. They stopped her after 5... :)

And to add to the already wonderful day, my other daughter's FEV1 went from 116% to 124%... she will be 9 next month and other than several sinus surgeries, she's never really been sick. But she is very tiny and we are hoping for a growth spurt soon!

All and all it was a perfect visit! Just wanted to share my joy and maybe encourage others who are where I was before. :)
 
L

Landy

New member
Yeah<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for the update!!
If there is one thing I've learned over the years is that we all have hills and valleys with CF--forgive me if someone already said this...I didn't read all the responses.
I'm glad that your daughter is out of that valley!!
 
L

Landy

New member
Yeah<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for the update!!
If there is one thing I've learned over the years is that we all have hills and valleys with CF--forgive me if someone already said this...I didn't read all the responses.
I'm glad that your daughter is out of that valley!!
 
L

Landy

New member
Yeah<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for the update!!
If there is one thing I've learned over the years is that we all have hills and valleys with CF--forgive me if someone already said this...I didn't read all the responses.
I'm glad that your daughter is out of that valley!!
 
L

Landy

New member
Yeah<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for the update!!
If there is one thing I've learned over the years is that we all have hills and valleys with CF--forgive me if someone already said this...I didn't read all the responses.
I'm glad that your daughter is out of that valley!!
 
L

Landy

New member
Yeah<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for the update!!
If there is one thing I've learned over the years is that we all have hills and valleys with CF--forgive me if someone already said this...I didn't read all the responses.
I'm glad that your daughter is out of that valley!!
 
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