ok, im confused! (posted in adults also)

[NanaOf8GirlsAndCounting]

I read this and it is very confusing. I know that no one can predict the future, however, it sounds like there are many type A personalities like myself that need to know where they get there figures and how they came to them. A report like this affects us all. Its already very confusing to explain CF to others when they tell me oh yeah, I saw a movie on it. I watched that movie and it was a bunch of bull. 2 CF patients holding hands in their shared hospital room during a tuneup with one of them culturing something really deadly. RIGHT!

 

[NanaOf8GirlsAndCounting]

I read this and it is very confusing. I know that no one can predict the future, however, it sounds like there are many type A personalities like myself that need to know where they get there figures and how they came to them. A report like this affects us all. Its already very confusing to explain CF to others when they tell me oh yeah, I saw a movie on it. I watched that movie and it was a bunch of bull. 2 CF patients holding hands in their shared hospital room during a tuneup with one of them culturing something really deadly. RIGHT!

 

[kitomd21]

My statement regarding CF being different today in relation to 10 years ago pertains to new therapies (i.e., not available approx 10 years ago) and how they relate to the course of the disease. CF is still CF. Just as there is a median life expectancy, there may also be a typical or expected response to these new and CURRENT (not future) therapies. Not everyone will respond the same way. HTS works well for some while for others, it's too harsh and not tolerated well. There are always going to be differences in how each individual may respond to one treatment over another. There is a general trend toward an increase in life expectancy based on a general trend of overall response to therapy.

 

[kitomd21]

My statement regarding CF being different today in relation to 10 years ago pertains to new therapies (i.e., not available approx 10 years ago) and how they relate to the course of the disease. CF is still CF. Just as there is a median life expectancy, there may also be a typical or expected response to these new and CURRENT (not future) therapies. Not everyone will respond the same way. HTS works well for some while for others, it's too harsh and not tolerated well. There are always going to be differences in how each individual may respond to one treatment over another. There is a general trend toward an increase in life expectancy based on a general trend of overall response to therapy.

 

[kitomd21]

My statement regarding CF being different today in relation to 10 years ago pertains to new therapies (i.e., not available approx 10 years ago) and how they relate to the course of the disease. CF is still CF. Just as there is a median life expectancy, there may also be a typical or expected response to these new and CURRENT (not future) therapies. Not everyone will respond the same way. HTS works well for some while for others, it's too harsh and not tolerated well. There are always going to be differences in how each individual may respond to one treatment over another. There is a general trend toward an increase in life expectancy based on a general trend of overall response to therapy.

 

[hmw]

Pulmozyme came out in 1994; Tobi (and I think HTS as well) in 1997. I do believe that without a doubt the increase in life expectancy we see amongst those in cf has a lot to do with the introduction of meds like this, as well as better understanding risk factors like cross contamination etc.

I think that is why the introduction of a number so much lower than what we are used to seeing was so shocking. A population this young has had quite a number of years now to benefit from those therapies, as well as the vest and the better understanding of the lifestyle factors that can be of benefit to them.

I know we can never be given a number that is 'exact' and i am not looking for numbers when I speak to Emily's doctors... but I am certainly looking for honesty and clarity from those that have access to and/or publishing info based on what's found in the cff registry. Statistics can be 'spun' in so many directions as it is; i'd rather they stuck to numbers based on fact and not conjecture on what they think 'may' happen.

 

[hmw]

Pulmozyme came out in 1994; Tobi (and I think HTS as well) in 1997. I do believe that without a doubt the increase in life expectancy we see amongst those in cf has a lot to do with the introduction of meds like this, as well as better understanding risk factors like cross contamination etc.

I think that is why the introduction of a number so much lower than what we are used to seeing was so shocking. A population this young has had quite a number of years now to benefit from those therapies, as well as the vest and the better understanding of the lifestyle factors that can be of benefit to them.

I know we can never be given a number that is 'exact' and i am not looking for numbers when I speak to Emily's doctors... but I am certainly looking for honesty and clarity from those that have access to and/or publishing info based on what's found in the cff registry. Statistics can be 'spun' in so many directions as it is; i'd rather they stuck to numbers based on fact and not conjecture on what they think 'may' happen.

 

[hmw]

Pulmozyme came out in 1994; Tobi (and I think HTS as well) in 1997. I do believe that without a doubt the increase in life expectancy we see amongst those in cf has a lot to do with the introduction of meds like this, as well as better understanding risk factors like cross contamination etc.
<br />
<br />I think that is why the introduction of a number so much lower than what we are used to seeing was so shocking. A population this young has had quite a number of years now to benefit from those therapies, as well as the vest and the better understanding of the lifestyle factors that can be of benefit to them.
<br />
<br />I know we can never be given a number that is 'exact' and i am not looking for numbers when I speak to Emily's doctors... but I am certainly looking for honesty and clarity from those that have access to and/or publishing info based on what's found in the cff registry. Statistics can be 'spun' in so many directions as it is; i'd rather they stuck to numbers based on fact and not conjecture on what they think 'may' happen.
<br />
<br />

 

[crickit715]

ok so get this.......the cff.org website changed the wording of "median age of 37" to "predicted median age of 37".......interesting they just recently (apparently since that article posted) added the word predicted. sounds like a useless number to me now! not interested in "predictions".

 

[crickit715]

ok so get this.......the cff.org website changed the wording of "median age of 37" to "predicted median age of 37".......interesting they just recently (apparently since that article posted) added the word predicted. sounds like a useless number to me now! not interested in "predictions".

 

[crickit715]

ok so get this.......the cff.org website changed the wording of "median age of 37" to "predicted median age of 37".......interesting they just recently (apparently since that article posted) added the word predicted. sounds like a useless number to me now! not interested in "predictions".

 

[hmw]

Not interested in predictions here either. We live in 2010 and the reality of 2010, and the limitations we face in 2010, is what we have to get through, before reaching the promises of better days tomorrow.

 

[hmw]

Not interested in predictions here either. We live in 2010 and the reality of 2010, and the limitations we face in 2010, is what we have to get through, before reaching the promises of better days tomorrow.

 

[hmw]

Not interested in predictions here either. We live in 2010 and the reality of 2010, and the limitations we face in 2010, is what we have to get through, before reaching the promises of better days tomorrow.