Mild CF - no need for treatment?

[mom2lillian]

VERY dangerous. Most likely a doctor that is just uneducated about what a pro-active approach can do---and not do.

I have FEV1 of 105-108% at my most recent visits, I have a plump BMI, clear sinuses, and I 'only' culture two things. It is still JUST as important for me to do my treatments. I was diagnosed at 21yo. For the first 4-5ish years of diagnosis I was only occasionally compliant and for the past 2.5 years I am hyper compliant. It make a WORLD of difference.

Unfortunately if she has been told and believes that there is a good chance she wont seek help again until she is very very ill and the damage will be done. Often times those of 'us' with a 'mild' cf spiral quickly because we are not treated timely, effectively and do not have the treatment regimen in place when somethig does start going really wrong.

if you want my email for her PM me

 

[mom2lillian]

VERY dangerous. Most likely a doctor that is just uneducated about what a pro-active approach can do---and not do.

I have FEV1 of 105-108% at my most recent visits, I have a plump BMI, clear sinuses, and I 'only' culture two things. It is still JUST as important for me to do my treatments. I was diagnosed at 21yo. For the first 4-5ish years of diagnosis I was only occasionally compliant and for the past 2.5 years I am hyper compliant. It make a WORLD of difference.

Unfortunately if she has been told and believes that there is a good chance she wont seek help again until she is very very ill and the damage will be done. Often times those of 'us' with a 'mild' cf spiral quickly because we are not treated timely, effectively and do not have the treatment regimen in place when somethig does start going really wrong.

if you want my email for her PM me

 

[mom2lillian]

VERY dangerous. Most likely a doctor that is just uneducated about what a pro-active approach can do---and not do.

I have FEV1 of 105-108% at my most recent visits, I have a plump BMI, clear sinuses, and I 'only' culture two things. It is still JUST as important for me to do my treatments. I was diagnosed at 21yo. For the first 4-5ish years of diagnosis I was only occasionally compliant and for the past 2.5 years I am hyper compliant. It make a WORLD of difference.

Unfortunately if she has been told and believes that there is a good chance she wont seek help again until she is very very ill and the damage will be done. Often times those of 'us' with a 'mild' cf spiral quickly because we are not treated timely, effectively and do not have the treatment regimen in place when somethig does start going really wrong.

if you want my email for her PM me

 

[mom2lillian]

VERY dangerous. Most likely a doctor that is just uneducated about what a pro-active approach can do---and not do.

I have FEV1 of 105-108% at my most recent visits, I have a plump BMI, clear sinuses, and I 'only' culture two things. It is still JUST as important for me to do my treatments. I was diagnosed at 21yo. For the first 4-5ish years of diagnosis I was only occasionally compliant and for the past 2.5 years I am hyper compliant. It make a WORLD of difference.

Unfortunately if she has been told and believes that there is a good chance she wont seek help again until she is very very ill and the damage will be done. Often times those of 'us' with a 'mild' cf spiral quickly because we are not treated timely, effectively and do not have the treatment regimen in place when somethig does start going really wrong.

if you want my email for her PM me

 

[mom2lillian]

VERY dangerous. Most likely a doctor that is just uneducated about what a pro-active approach can do---and not do.
<br />
<br />I have FEV1 of 105-108% at my most recent visits, I have a plump BMI, clear sinuses, and I 'only' culture two things. It is still JUST as important for me to do my treatments. I was diagnosed at 21yo. For the first 4-5ish years of diagnosis I was only occasionally compliant and for the past 2.5 years I am hyper compliant. It make a WORLD of difference.
<br />
<br />Unfortunately if she has been told and believes that there is a good chance she wont seek help again until she is very very ill and the damage will be done. Often times those of 'us' with a 'mild' cf spiral quickly because we are not treated timely, effectively and do not have the treatment regimen in place when somethig does start going really wrong.
<br />
<br />if you want my email for her PM me

 

[NancyLKF]

Thanks everyone - my sister is back for a week from Haiti and I'm seeing her on saturday and wanted to have advice and information from someone other than me to give her. I believe her friend was officially diagnosed and told by the nonCF doctor that since it was mild she didn't have to worry or do any treatments that she would only need to worry about her kids having it.... crazy. Especially since she had to have surgury to clean her sinuses out.
Thanks again. If anyone else has thoughts, please comment.

 

[NancyLKF]

Thanks everyone - my sister is back for a week from Haiti and I'm seeing her on saturday and wanted to have advice and information from someone other than me to give her. I believe her friend was officially diagnosed and told by the nonCF doctor that since it was mild she didn't have to worry or do any treatments that she would only need to worry about her kids having it.... crazy. Especially since she had to have surgury to clean her sinuses out.
Thanks again. If anyone else has thoughts, please comment.

 

[NancyLKF]

Thanks everyone - my sister is back for a week from Haiti and I'm seeing her on saturday and wanted to have advice and information from someone other than me to give her. I believe her friend was officially diagnosed and told by the nonCF doctor that since it was mild she didn't have to worry or do any treatments that she would only need to worry about her kids having it.... crazy. Especially since she had to have surgury to clean her sinuses out.
Thanks again. If anyone else has thoughts, please comment.

 

[NancyLKF]

Thanks everyone - my sister is back for a week from Haiti and I'm seeing her on saturday and wanted to have advice and information from someone other than me to give her. I believe her friend was officially diagnosed and told by the nonCF doctor that since it was mild she didn't have to worry or do any treatments that she would only need to worry about her kids having it.... crazy. Especially since she had to have surgury to clean her sinuses out.
Thanks again. If anyone else has thoughts, please comment.

 

[NancyLKF]

Thanks everyone - my sister is back for a week from Haiti and I'm seeing her on saturday and wanted to have advice and information from someone other than me to give her. I believe her friend was officially diagnosed and told by the nonCF doctor that since it was mild she didn't have to worry or do any treatments that she would only need to worry about her kids having it.... crazy. Especially since she had to have surgury to clean her sinuses out.
<br />Thanks again. If anyone else has thoughts, please comment.

 

[NancyLKF]

So I gave all of your thoughts and advice to my sister and she told her friend who took your advice and went to see a CF specialist. The specialist told her that her CF is not mild at all and she needed to begin treatments immediately. So thank you to everyone who responded... you helped save a life.

 

[NancyLKF]

So I gave all of your thoughts and advice to my sister and she told her friend who took your advice and went to see a CF specialist. The specialist told her that her CF is not mild at all and she needed to begin treatments immediately. So thank you to everyone who responded... you helped save a life.

 

[NancyLKF]

So I gave all of your thoughts and advice to my sister and she told her friend who took your advice and went to see a CF specialist. The specialist told her that her CF is not mild at all and she needed to begin treatments immediately. So thank you to everyone who responded... you helped save a life.

 

[NancyLKF]

So I gave all of your thoughts and advice to my sister and she told her friend who took your advice and went to see a CF specialist. The specialist told her that her CF is not mild at all and she needed to begin treatments immediately. So thank you to everyone who responded... you helped save a life.

 

[NancyLKF]

So I gave all of your thoughts and advice to my sister and she told her friend who took your advice and went to see a CF specialist. The specialist told her that her CF is not mild at all and she needed to begin treatments immediately. So thank you to everyone who responded... you helped save a life.
<br />
<br />

 

[JORDYSMOM]

Nancy, YOU made a huge difference in this person's life! Because you put your time and energy into finding answers for her, she is getting the proper care. This site is absolutely full of awesome people, and you are just another example of that fact.

Stacey

 

[JORDYSMOM]

Nancy, YOU made a huge difference in this person's life! Because you put your time and energy into finding answers for her, she is getting the proper care. This site is absolutely full of awesome people, and you are just another example of that fact.

Stacey

 

[JORDYSMOM]

Nancy, YOU made a huge difference in this person's life! Because you put your time and energy into finding answers for her, she is getting the proper care. This site is absolutely full of awesome people, and you are just another example of that fact.

Stacey

 

[JORDYSMOM]

Nancy, YOU made a huge difference in this person's life! Because you put your time and energy into finding answers for her, she is getting the proper care. This site is absolutely full of awesome people, and you are just another example of that fact.

Stacey

 

[JORDYSMOM]

Nancy, YOU made a huge difference in this person's life! Because you put your time and energy into finding answers for her, she is getting the proper care. This site is absolutely full of awesome people, and you are just another example of that fact.
<br />
<br />Stacey