For all Cystic's in there 20's

Ricky123 · Apr 26, 2008

some of these docters that tell you this kind of information really havent got a clue(they dont have cf and have not lived with it).I view cf as something you have to keep on top of otherwise you go down hill very quick.Case in point me my fev1 was mild for ages 80% and over (but only cos i worked bloude hard at my treatments) a slight let up and iam in for ivs down to fev1 56 with a serious infection and from what the docter told me 60 years ago may have died(cos ivs and meds did not exist),
My point is some people are bad from cf cos they are not very compliant(i dont exactly blame them cos its such a ***** treatment regime to have to do every day)

but i dont believe them docs at your hospital, it generally varies how cf affects people ,ie looking on previous posts on here there is a healthy number whose fev1 is still over 60 so what them docs have told you isnt right,
and one more thing at times you know your own body and health ,and how cf affects you better than any docter in a white suit ,who at times like to categorise everyone in levels(and at times from my experience they are off the mark)

Ricky123 · Apr 26, 2008

some of these docters that tell you this kind of information really havent got a clue(they dont have cf and have not lived with it).I view cf as something you have to keep on top of otherwise you go down hill very quick.Case in point me my fev1 was mild for ages 80% and over (but only cos i worked bloude hard at my treatments) a slight let up and iam in for ivs down to fev1 56 with a serious infection and from what the docter told me 60 years ago may have died(cos ivs and meds did not exist),
My point is some people are bad from cf cos they are not very compliant(i dont exactly blame them cos its such a ***** treatment regime to have to do every day)

but i dont believe them docs at your hospital, it generally varies how cf affects people ,ie looking on previous posts on here there is a healthy number whose fev1 is still over 60 so what them docs have told you isnt right,
and one more thing at times you know your own body and health ,and how cf affects you better than any docter in a white suit ,who at times like to categorise everyone in levels(and at times from my experience they are off the mark)

Ricky123 · Apr 26, 2008

some of these docters that tell you this kind of information really havent got a clue(they dont have cf and have not lived with it).I view cf as something you have to keep on top of otherwise you go down hill very quick.Case in point me my fev1 was mild for ages 80% and over (but only cos i worked bloude hard at my treatments) a slight let up and iam in for ivs down to fev1 56 with a serious infection and from what the docter told me 60 years ago may have died(cos ivs and meds did not exist),
My point is some people are bad from cf cos they are not very compliant(i dont exactly blame them cos its such a ***** treatment regime to have to do every day)

but i dont believe them docs at your hospital, it generally varies how cf affects people ,ie looking on previous posts on here there is a healthy number whose fev1 is still over 60 so what them docs have told you isnt right,
and one more thing at times you know your own body and health ,and how cf affects you better than any docter in a white suit ,who at times like to categorise everyone in levels(and at times from my experience they are off the mark)

Ricky123 · Apr 26, 2008

some of these docters that tell you this kind of information really havent got a clue(they dont have cf and have not lived with it).I view cf as something you have to keep on top of otherwise you go down hill very quick.Case in point me my fev1 was mild for ages 80% and over (but only cos i worked bloude hard at my treatments) a slight let up and iam in for ivs down to fev1 56 with a serious infection and from what the docter told me 60 years ago may have died(cos ivs and meds did not exist),
My point is some people are bad from cf cos they are not very compliant(i dont exactly blame them cos its such a ***** treatment regime to have to do every day)

but i dont believe them docs at your hospital, it generally varies how cf affects people ,ie looking on previous posts on here there is a healthy number whose fev1 is still over 60 so what them docs have told you isnt right,
and one more thing at times you know your own body and health ,and how cf affects you better than any docter in a white suit ,who at times like to categorise everyone in levels(and at times from my experience they are off the mark)

Ricky123 · Apr 26, 2008

some of these docters that tell you this kind of information really havent got a clue(they dont have cf and have not lived with it).I view cf as something you have to keep on top of otherwise you go down hill very quick.Case in point me my fev1 was mild for ages 80% and over (but only cos i worked bloude hard at my treatments) a slight let up and iam in for ivs down to fev1 56 with a serious infection and from what the docter told me 60 years ago may have died(cos ivs and meds did not exist),
 My point is some people are bad from cf cos they are not very compliant(i dont exactly blame them cos its such a ***** treatment regime to have to do every day)
 
 but i dont believe them docs at your hospital, it generally varies how cf affects people ,ie looking on previous posts on here there is a healthy number whose fev1 is still over 60 so what them docs have told you isnt right,
 and one more thing at times you know your own body and health ,and how cf affects you better than any docter in a white suit ,who at times like to categorise everyone in levels(and at times from my experience they are off the mark)

nmeier22 · Apr 27, 2008

Sarah;,

I am a 20 year old female living with CF also. I have been on enzymes for years now ever since i can remember. I have also been on TOBI for years now also, although TOBI for me is every other month. Anyways NO im not waiting for lungs and NO not every 20 year old is that sick. Many live to older than 40 now. Do your research its amazing. I hope your doing ok. I have a CF doctor appointment tom and im interested in whats going to haapen. I dont get sick like you but i ususally go into the hopsital 2 times a year. Last August i got a PORT placed in my chest because my veins are so blown from all the IV'S and PICC lines. Its awsome though way better than all that other stuff.

NICKI MEIER

nmeier22 · Apr 27, 2008

Sarah;,

I am a 20 year old female living with CF also. I have been on enzymes for years now ever since i can remember. I have also been on TOBI for years now also, although TOBI for me is every other month. Anyways NO im not waiting for lungs and NO not every 20 year old is that sick. Many live to older than 40 now. Do your research its amazing. I hope your doing ok. I have a CF doctor appointment tom and im interested in whats going to haapen. I dont get sick like you but i ususally go into the hopsital 2 times a year. Last August i got a PORT placed in my chest because my veins are so blown from all the IV'S and PICC lines. Its awsome though way better than all that other stuff.

NICKI MEIER

nmeier22 · Apr 27, 2008

Sarah;,

I am a 20 year old female living with CF also. I have been on enzymes for years now ever since i can remember. I have also been on TOBI for years now also, although TOBI for me is every other month. Anyways NO im not waiting for lungs and NO not every 20 year old is that sick. Many live to older than 40 now. Do your research its amazing. I hope your doing ok. I have a CF doctor appointment tom and im interested in whats going to haapen. I dont get sick like you but i ususally go into the hopsital 2 times a year. Last August i got a PORT placed in my chest because my veins are so blown from all the IV'S and PICC lines. Its awsome though way better than all that other stuff.

NICKI MEIER

nmeier22 · Apr 27, 2008

Sarah;,

I am a 20 year old female living with CF also. I have been on enzymes for years now ever since i can remember. I have also been on TOBI for years now also, although TOBI for me is every other month. Anyways NO im not waiting for lungs and NO not every 20 year old is that sick. Many live to older than 40 now. Do your research its amazing. I hope your doing ok. I have a CF doctor appointment tom and im interested in whats going to haapen. I dont get sick like you but i ususally go into the hopsital 2 times a year. Last August i got a PORT placed in my chest because my veins are so blown from all the IV'S and PICC lines. Its awsome though way better than all that other stuff.

NICKI MEIER

nmeier22 · Apr 27, 2008

Sarah;,
 
 I am a 20 year old female living with CF also. I have been on enzymes for years now ever since i can remember. I have also been on TOBI for years now also, although TOBI for me is every other month. Anyways NO im not waiting for lungs and NO not every 20 year old is that sick. Many live to older than 40 now. Do your research its amazing. I hope your doing ok. I have a CF doctor appointment tom and im interested in whats going to haapen. I dont get sick like you but i ususally go into the hopsital 2 times a year. Last August i got a PORT placed in my chest because my veins are so blown from all the IV'S and PICC lines. Its awsome though way better than all that other stuff.
 
 NICKI MEIER

Diane · Apr 28, 2008