When i was younger, i was always told the same thing about not being the "typical" cf case. I was never told to do CPT or anything at all. Granted i was diagnosed in 1968 when they really didnt know too much about cf, but still in my teens not a word was mentioned about CPT till i was in my 20's and went to a different cf clinic. They would bring it up constantly and i couldnt figure out why.... i figured since i never had to do it before and stayed well, why start now? It sounds like you may need to find another cf Dr. One that is a bit more interested in preventing your daughter from getting sicker. Some Doctors wait till the patient is so obviously sick that they are in real trouble, and some want to nip it in the bud. The Dr. that likes to take action right away no matter what the numbers say is the one that would be best.
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- Thread starter vinyrdsong
- Start date
When i was younger, i was always told the same thing about not being the "typical" cf case. I was never told to do CPT or anything at all. Granted i was diagnosed in 1968 when they really didnt know too much about cf, but still in my teens not a word was mentioned about CPT till i was in my 20's and went to a different cf clinic. They would bring it up constantly and i couldnt figure out why.... i figured since i never had to do it before and stayed well, why start now? It sounds like you may need to find another cf Dr. One that is a bit more interested in preventing your daughter from getting sicker. Some Doctors wait till the patient is so obviously sick that they are in real trouble, and some want to nip it in the bud. The Dr. that likes to take action right away no matter what the numbers say is the one that would be best.
When i was younger, i was always told the same thing about not being the "typical" cf case. I was never told to do CPT or anything at all. Granted i was diagnosed in 1968 when they really didnt know too much about cf, but still in my teens not a word was mentioned about CPT till i was in my 20's and went to a different cf clinic. They would bring it up constantly and i couldnt figure out why.... i figured since i never had to do it before and stayed well, why start now? It sounds like you may need to find another cf Dr. One that is a bit more interested in preventing your daughter from getting sicker. Some Doctors wait till the patient is so obviously sick that they are in real trouble, and some want to nip it in the bud. The Dr. that likes to take action right away no matter what the numbers say is the one that would be best.
When i was younger, i was always told the same thing about not being the "typical" cf case. I was never told to do CPT or anything at all. Granted i was diagnosed in 1968 when they really didnt know too much about cf, but still in my teens not a word was mentioned about CPT till i was in my 20's and went to a different cf clinic. They would bring it up constantly and i couldnt figure out why.... i figured since i never had to do it before and stayed well, why start now? It sounds like you may need to find another cf Dr. One that is a bit more interested in preventing your daughter from getting sicker. Some Doctors wait till the patient is so obviously sick that they are in real trouble, and some want to nip it in the bud. The Dr. that likes to take action right away no matter what the numbers say is the one that would be best.
When i was younger, i was always told the same thing about not being the "typical" cf case. I was never told to do CPT or anything at all. Granted i was diagnosed in 1968 when they really didnt know too much about cf, but still in my teens not a word was mentioned about CPT till i was in my 20's and went to a different cf clinic. They would bring it up constantly and i couldnt figure out why.... i figured since i never had to do it before and stayed well, why start now? It sounds like you may need to find another cf Dr. One that is a bit more interested in preventing your daughter from getting sicker. Some Doctors wait till the patient is so obviously sick that they are in real trouble, and some want to nip it in the bud. The Dr. that likes to take action right away no matter what the numbers say is the one that would be best.
vinyrdsong
New member
Her FEV1 is 91%, if she goes into the hospital they always go down to 70% for some reason. She had to be admitted from time to time due to her mean ol stomach issues and they would check her pfts in the hospital following the CF protocals for the hospital. She does take creon for her stomach issues, though even if she doesn't take them she still gains weight easily though her stomach is always in pain. Truly appreciate all of the comments. I love her so much and hate to her see her so besides herself as related to the dealing with the doctors and this yulky disease. Truly am hoping to guide her to some positive ideas for her.
Thank you.
Christie (mom to CF daughter 19 years old)
Thank you.
Christie (mom to CF daughter 19 years old)
vinyrdsong
New member
Her FEV1 is 91%, if she goes into the hospital they always go down to 70% for some reason. She had to be admitted from time to time due to her mean ol stomach issues and they would check her pfts in the hospital following the CF protocals for the hospital. She does take creon for her stomach issues, though even if she doesn't take them she still gains weight easily though her stomach is always in pain. Truly appreciate all of the comments. I love her so much and hate to her see her so besides herself as related to the dealing with the doctors and this yulky disease. Truly am hoping to guide her to some positive ideas for her.
Thank you.
Christie (mom to CF daughter 19 years old)
Thank you.
Christie (mom to CF daughter 19 years old)
vinyrdsong
New member
Her FEV1 is 91%, if she goes into the hospital they always go down to 70% for some reason. She had to be admitted from time to time due to her mean ol stomach issues and they would check her pfts in the hospital following the CF protocals for the hospital. She does take creon for her stomach issues, though even if she doesn't take them she still gains weight easily though her stomach is always in pain. Truly appreciate all of the comments. I love her so much and hate to her see her so besides herself as related to the dealing with the doctors and this yulky disease. Truly am hoping to guide her to some positive ideas for her.
Thank you.
Christie (mom to CF daughter 19 years old)
Thank you.
Christie (mom to CF daughter 19 years old)
vinyrdsong
New member
Her FEV1 is 91%, if she goes into the hospital they always go down to 70% for some reason. She had to be admitted from time to time due to her mean ol stomach issues and they would check her pfts in the hospital following the CF protocals for the hospital. She does take creon for her stomach issues, though even if she doesn't take them she still gains weight easily though her stomach is always in pain. Truly appreciate all of the comments. I love her so much and hate to her see her so besides herself as related to the dealing with the doctors and this yulky disease. Truly am hoping to guide her to some positive ideas for her.
Thank you.
Christie (mom to CF daughter 19 years old)
Thank you.
Christie (mom to CF daughter 19 years old)
vinyrdsong
New member
Her FEV1 is 91%, if she goes into the hospital they always go down to 70% for some reason. She had to be admitted from time to time due to her mean ol stomach issues and they would check her pfts in the hospital following the CF protocals for the hospital. She does take creon for her stomach issues, though even if she doesn't take them she still gains weight easily though her stomach is always in pain. Truly appreciate all of the comments. I love her so much and hate to her see her so besides herself as related to the dealing with the doctors and this yulky disease. Truly am hoping to guide her to some positive ideas for her.
<br />Thank you.
<br />
<br />Christie (mom to CF daughter 19 years old)
<br />Thank you.
<br />
<br />Christie (mom to CF daughter 19 years old)