Should I accept 75 % lung function im my

[NoExcuses]

I would shoot for higher.

You may not get higher, but you'll never know unless you try.

But I take an extremely aggressive, proactive approach to my CF care. Many others aren't as obsessive, if you will, as I am.

Check out this article. It might shed some light on how different CF Centers can be and what proactivity can do for your care.

FEV1 of 80% is just 5 points above "mild" CF. FEV1 74% turns into moderate. So although I'm not big on labels, etc., don't let "mild" fool you. Things can change in the blink of an eye if you're not on top of things. Even when you are on top of things CF can change in a blink of an eye.




<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>

 

[NoExcuses]

I would shoot for higher.

You may not get higher, but you'll never know unless you try.

But I take an extremely aggressive, proactive approach to my CF care. Many others aren't as obsessive, if you will, as I am.

Check out this article. It might shed some light on how different CF Centers can be and what proactivity can do for your care.

FEV1 of 80% is just 5 points above "mild" CF. FEV1 74% turns into moderate. So although I'm not big on labels, etc., don't let "mild" fool you. Things can change in the blink of an eye if you're not on top of things. Even when you are on top of things CF can change in a blink of an eye.




<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>

 

[NoExcuses]

I would shoot for higher.

You may not get higher, but you'll never know unless you try.

But I take an extremely aggressive, proactive approach to my CF care. Many others aren't as obsessive, if you will, as I am.

Check out this article. It might shed some light on how different CF Centers can be and what proactivity can do for your care.

FEV1 of 80% is just 5 points above "mild" CF. FEV1 74% turns into moderate. So although I'm not big on labels, etc., don't let "mild" fool you. Things can change in the blink of an eye if you're not on top of things. Even when you are on top of things CF can change in a blink of an eye.




<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>

 

[NoExcuses]

I would shoot for higher.

You may not get higher, but you'll never know unless you try.

But I take an extremely aggressive, proactive approach to my CF care. Many others aren't as obsessive, if you will, as I am.

Check out this article. It might shed some light on how different CF Centers can be and what proactivity can do for your care.

FEV1 of 80% is just 5 points above "mild" CF. FEV1 74% turns into moderate. So although I'm not big on labels, etc., don't let "mild" fool you. Things can change in the blink of an eye if you're not on top of things. Even when you are on top of things CF can change in a blink of an eye.




<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact">http://www.newyorker.com/archi...04/12/06/041206fa_fact</a>

 

[princessjdc]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

You cant change it if he loses lunch function to do damage so now is your time to try and keep what he has!</end quote></div>

Is that what we are calling it now Melissa, Lunch Function, LOL, sorry I just had to say something.

It wouldnt hurt to ask the doc about a tune up and staying on top of your kids CF is the way to go.

 

[princessjdc]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

You cant change it if he loses lunch function to do damage so now is your time to try and keep what he has!</end quote></div>

Is that what we are calling it now Melissa, Lunch Function, LOL, sorry I just had to say something.

It wouldnt hurt to ask the doc about a tune up and staying on top of your kids CF is the way to go.

 

[princessjdc]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

You cant change it if he loses lunch function to do damage so now is your time to try and keep what he has!</end quote></div>

Is that what we are calling it now Melissa, Lunch Function, LOL, sorry I just had to say something.

It wouldnt hurt to ask the doc about a tune up and staying on top of your kids CF is the way to go.

 

[princessjdc]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

You cant change it if he loses lunch function to do damage so now is your time to try and keep what he has!</end quote></div>

Is that what we are calling it now Melissa, Lunch Function, LOL, sorry I just had to say something.

It wouldnt hurt to ask the doc about a tune up and staying on top of your kids CF is the way to go.

 

[princessjdc]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

You cant change it if he loses lunch function to do damage so now is your time to try and keep what he has!</end quote>

Is that what we are calling it now Melissa, Lunch Function, LOL, sorry I just had to say something.

It wouldnt hurt to ask the doc about a tune up and staying on top of your kids CF is the way to go.

 

[princessjdc]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

You cant change it if he loses lunch function to do damage so now is your time to try and keep what he has!</end quote>

Is that what we are calling it now Melissa, Lunch Function, LOL, sorry I just had to say something.

It wouldnt hurt to ask the doc about a tune up and staying on top of your kids CF is the way to go.

 

[tammykrumrey]

Kathy,

I am sorry that it took so long to get a correct dx. How frustrating that must had been. I, too, have a 7 year old Hannah with CF (she will be 8 in Sept).

I think I would push for a tune up. Damage can not be reversed, but maybe he is culturing some kind of bacteria that is causing his lung function to be down.

I would have a hard time accepting 75% in my 11 year old child, without trying everything I could to get it back up. But as Melissa pointed out, he went a long time without the proper treatments...

 

[tammykrumrey]

Kathy,

I am sorry that it took so long to get a correct dx. How frustrating that must had been. I, too, have a 7 year old Hannah with CF (she will be 8 in Sept).

I think I would push for a tune up. Damage can not be reversed, but maybe he is culturing some kind of bacteria that is causing his lung function to be down.

I would have a hard time accepting 75% in my 11 year old child, without trying everything I could to get it back up. But as Melissa pointed out, he went a long time without the proper treatments...

 

[tammykrumrey]

Kathy,

I am sorry that it took so long to get a correct dx. How frustrating that must had been. I, too, have a 7 year old Hannah with CF (she will be 8 in Sept).

I think I would push for a tune up. Damage can not be reversed, but maybe he is culturing some kind of bacteria that is causing his lung function to be down.

I would have a hard time accepting 75% in my 11 year old child, without trying everything I could to get it back up. But as Melissa pointed out, he went a long time without the proper treatments...

 

[tammykrumrey]

Kathy,

I am sorry that it took so long to get a correct dx. How frustrating that must had been. I, too, have a 7 year old Hannah with CF (she will be 8 in Sept).

I think I would push for a tune up. Damage can not be reversed, but maybe he is culturing some kind of bacteria that is causing his lung function to be down.

I would have a hard time accepting 75% in my 11 year old child, without trying everything I could to get it back up. But as Melissa pointed out, he went a long time without the proper treatments...

 

[tammykrumrey]

Kathy,

I am sorry that it took so long to get a correct dx. How frustrating that must had been. I, too, have a 7 year old Hannah with CF (she will be 8 in Sept).

I think I would push for a tune up. Damage can not be reversed, but maybe he is culturing some kind of bacteria that is causing his lung function to be down.

I would have a hard time accepting 75% in my 11 year old child, without trying everything I could to get it back up. But as Melissa pointed out, he went a long time without the proper treatments...

 

[tammykrumrey]

Kathy,

I am sorry that it took so long to get a correct dx. How frustrating that must had been. I, too, have a 7 year old Hannah with CF (she will be 8 in Sept).

I think I would push for a tune up. Damage can not be reversed, but maybe he is culturing some kind of bacteria that is causing his lung function to be down.

I would have a hard time accepting 75% in my 11 year old child, without trying everything I could to get it back up. But as Melissa pointed out, he went a long time without the proper treatments...

 

[cherishthree]

Thanks for responding it seems hard for me to speek up. One because he was diagnosed so late I am thankfull for that and the same time mad. Hannah has cultured Staph aures Mrsa and pa. Christopher so far normal respitory flora? They both have the same mutatin but Hannah has severe ftt 39 lbs an 44 inches at 7 years old and Christopher no ftt ever he is rather normal for his age 83 lbs and 54 inches at 11 years old. His main problem is respitory their mutation is mainly just respitory but Hannah is going in for a g tube ivaluation in two weeks all is happening fast but waiting to long if you know what I mean. This seems to be a secret world when I talk to family about it they brush me off they always have saying you where small when you where young uncle so and so had asthma and was admitted once or twice for pneumonia so why all the fusss? This will pass they tell me!! HELP!! Is this normal !!!

 

[cherishthree]

Thanks for responding it seems hard for me to speek up. One because he was diagnosed so late I am thankfull for that and the same time mad. Hannah has cultured Staph aures Mrsa and pa. Christopher so far normal respitory flora? They both have the same mutatin but Hannah has severe ftt 39 lbs an 44 inches at 7 years old and Christopher no ftt ever he is rather normal for his age 83 lbs and 54 inches at 11 years old. His main problem is respitory their mutation is mainly just respitory but Hannah is going in for a g tube ivaluation in two weeks all is happening fast but waiting to long if you know what I mean. This seems to be a secret world when I talk to family about it they brush me off they always have saying you where small when you where young uncle so and so had asthma and was admitted once or twice for pneumonia so why all the fusss? This will pass they tell me!! HELP!! Is this normal !!!

 

[cherishthree]

Thanks for responding it seems hard for me to speek up. One because he was diagnosed so late I am thankfull for that and the same time mad. Hannah has cultured Staph aures Mrsa and pa. Christopher so far normal respitory flora? They both have the same mutatin but Hannah has severe ftt 39 lbs an 44 inches at 7 years old and Christopher no ftt ever he is rather normal for his age 83 lbs and 54 inches at 11 years old. His main problem is respitory their mutation is mainly just respitory but Hannah is going in for a g tube ivaluation in two weeks all is happening fast but waiting to long if you know what I mean. This seems to be a secret world when I talk to family about it they brush me off they always have saying you where small when you where young uncle so and so had asthma and was admitted once or twice for pneumonia so why all the fusss? This will pass they tell me!! HELP!! Is this normal !!!

 

[cherishthree]

Thanks for responding it seems hard for me to speek up. One because he was diagnosed so late I am thankfull for that and the same time mad. Hannah has cultured Staph aures Mrsa and pa. Christopher so far normal respitory flora? They both have the same mutatin but Hannah has severe ftt 39 lbs an 44 inches at 7 years old and Christopher no ftt ever he is rather normal for his age 83 lbs and 54 inches at 11 years old. His main problem is respitory their mutation is mainly just respitory but Hannah is going in for a g tube ivaluation in two weeks all is happening fast but waiting to long if you know what I mean. This seems to be a secret world when I talk to family about it they brush me off they always have saying you where small when you where young uncle so and so had asthma and was admitted once or twice for pneumonia so why all the fusss? This will pass they tell me!! HELP!! Is this normal !!!