ok, im confused! (posted in adults also)

[crickit715]

glad im not the only one!! i wonder if there is someone or somewhere we can contact to find out where these numbers are coming from?? not that im "obsessing" on the numbers, but i also dont want to be told things that are "guesstimates" and conjecture just to "make the cff organization look better"...(does that make sense?). ive always thought that the 37 number seemed awful high in comparison to most real life stories that we see on this site and elsewhere, but that is the number we always hear!!.... then after reading what abc reported and noting such a big difference it is making me question why a "median 37" is even used in reporting by the cff.org. maybe im just making a big deal about nothing, but i feel very caught off guard by these new statistics!!

 

[petnurse]

A median age simply means that 50% of the CF population will live to see 37 or beyond. 50% will not. That still doesn't explain the numbers that they are giving. I just thought that would help explain what "median" means.

 

[petnurse]

A median age simply means that 50% of the CF population will live to see 37 or beyond. 50% will not. That still doesn't explain the numbers that they are giving. I just thought that would help explain what "median" means.

 

[petnurse]

A median age simply means that 50% of the CF population will live to see 37 or beyond. 50% will not. That still doesn't explain the numbers that they are giving. I just thought that would help explain what "median" means.

 

[hmw]

this is *just my opinion* and worth no more than anyone elses, but I'll offer it.

It means little to me if a dr tells me that my child will live a much longer lifespan if there is no hard evidence (vs. hopes being pinned on promising tx yet to be proven or 'trends' being seen) to back it up. There is someone at our clinic who does talk like that and it's that kind of talk that has actually made her the ONE person at our clinic I don't trust or respect as much as everyone else. Why? Because without actual evidence, it makes me feel like this minimizes the severity of the disease and all that cf encompasses and an unrealistic view of how to address the complexities involved in adding decades to the lives of those with the disease. To be honest, I am not interested in what they think will happen. I want to know what the evidence is telling us IS HAPPENING. For example, what IS happening with kids that have the mutations and/or clinical symptoms that typically result in classic/progressive disease from early childhood? Are THEY living longer? yeah, tough question that is hard to find the answer to but I want to know!

I completely agree that meds like tobi and pulmozyme have added years... but it will take many years of use before we know whether or not the vertex drugs (or the other new ones in development targeting the disease genetically) represent an effective long-term treatment.

I NEED to understand cf as the disease it is now. it's the only way I can cope and understand the monster that we face. I hope and pray we will see a cure, or at the least a long-term way to better manage the cause of the disease vs the damage control we deal with now. But if those things do not come to be, then understanding and accepting the reality of the disease NOW is the only way to come to terms with it.

My daughter has never had huge pulmonary involvement, not like what many with cf have. However, it's an insidious disease. Her infections have crept up on us, despite all we do. We are compliant... we try our hardest, do tx day in and day out; all the nebs that have been recommended of us, and I research and look for whatever I can do to make the most of our tx. And yet my daughter's most recent xray still showed cf-related changes and she is only 9.

 

[hmw]

this is *just my opinion* and worth no more than anyone elses, but I'll offer it.

It means little to me if a dr tells me that my child will live a much longer lifespan if there is no hard evidence (vs. hopes being pinned on promising tx yet to be proven or 'trends' being seen) to back it up. There is someone at our clinic who does talk like that and it's that kind of talk that has actually made her the ONE person at our clinic I don't trust or respect as much as everyone else. Why? Because without actual evidence, it makes me feel like this minimizes the severity of the disease and all that cf encompasses and an unrealistic view of how to address the complexities involved in adding decades to the lives of those with the disease. To be honest, I am not interested in what they think will happen. I want to know what the evidence is telling us IS HAPPENING. For example, what IS happening with kids that have the mutations and/or clinical symptoms that typically result in classic/progressive disease from early childhood? Are THEY living longer? yeah, tough question that is hard to find the answer to but I want to know!

I completely agree that meds like tobi and pulmozyme have added years... but it will take many years of use before we know whether or not the vertex drugs (or the other new ones in development targeting the disease genetically) represent an effective long-term treatment.

I NEED to understand cf as the disease it is now. it's the only way I can cope and understand the monster that we face. I hope and pray we will see a cure, or at the least a long-term way to better manage the cause of the disease vs the damage control we deal with now. But if those things do not come to be, then understanding and accepting the reality of the disease NOW is the only way to come to terms with it.

My daughter has never had huge pulmonary involvement, not like what many with cf have. However, it's an insidious disease. Her infections have crept up on us, despite all we do. We are compliant... we try our hardest, do tx day in and day out; all the nebs that have been recommended of us, and I research and look for whatever I can do to make the most of our tx. And yet my daughter's most recent xray still showed cf-related changes and she is only 9.

 

[hmw]

this is *just my opinion* and worth no more than anyone elses, but I'll offer it.
<br />
<br />It means little to me if a dr tells me that my child will live a much longer lifespan if there is no hard evidence (vs. hopes being pinned on promising tx yet to be proven or 'trends' being seen) to back it up. There is someone at our clinic who does talk like that and it's that kind of talk that has actually made her the ONE person at our clinic I don't trust or respect as much as everyone else. Why? Because without actual evidence, it makes me feel like this minimizes the severity of the disease and all that cf encompasses and an unrealistic view of how to address the complexities involved in adding decades to the lives of those with the disease. To be honest, I am not interested in what they think will happen. I want to know what the evidence is telling us IS HAPPENING. For example, what IS happening with kids that have the mutations and/or clinical symptoms that typically result in classic/progressive disease from early childhood? Are THEY living longer? yeah, tough question that is hard to find the answer to but I want to know!
<br />
<br />I completely agree that meds like tobi and pulmozyme have added years... but it will take many years of use before we know whether or not the vertex drugs (or the other new ones in development targeting the disease genetically) represent an effective long-term treatment.
<br />
<br />I NEED to understand cf as the disease it is now. it's the only way I can cope and understand the monster that we face. I hope and pray we will see a cure, or at the least a long-term way to better manage the cause of the disease vs the damage control we deal with now. But if those things do not come to be, then understanding and accepting the reality of the disease NOW is the only way to come to terms with it.
<br />
<br />My daughter has never had huge pulmonary involvement, not like what many with cf have. However, it's an insidious disease. Her infections have crept up on us, despite all we do. We are compliant... we try our hardest, do tx day in and day out; all the nebs that have been recommended of us, and I research and look for whatever I can do to make the most of our tx. And yet my daughter's most recent xray still showed cf-related changes and she is only 9.

 

[crickit715]

harriett,
i feel exactly the same way you do! i want to scream when i feel like someone is "minimizing" cf or what needs to be done to effectively help control the disease progression. i have strived to know the ins and outs of cf, of the df508 mutation and exactly how it functions/doesnt function on the cell level. i also absolutley NEED to understand this disease to cope with all that cf encompasses. i think my issue with this isnt so much that i am overly concerned about what "they" THINK will happen, as i am about seemingly false or misleading info being reported in what seems to be an effort to minimize the severity of the disease. part of me wants to go wild when i have to tell someone about sophies cf and then to hear them say "oh, i know so and so and they are 50 and have it" like it is no big deal when we struggle daily with so many medications, treatments, precautions, dietary issues, etc. etc. we are also soooo compliant, day in and out, and when she had her 2 year xray her doc said they showed "normal cf progression". i guess my whole point is that i feel so many "take cf lightly" because they simply dont understand and/or dont wish to understand the complexities of it. (wearing rose colored glasses) ahhh, ok....just needed to vent!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[crickit715]

harriett,
i feel exactly the same way you do! i want to scream when i feel like someone is "minimizing" cf or what needs to be done to effectively help control the disease progression. i have strived to know the ins and outs of cf, of the df508 mutation and exactly how it functions/doesnt function on the cell level. i also absolutley NEED to understand this disease to cope with all that cf encompasses. i think my issue with this isnt so much that i am overly concerned about what "they" THINK will happen, as i am about seemingly false or misleading info being reported in what seems to be an effort to minimize the severity of the disease. part of me wants to go wild when i have to tell someone about sophies cf and then to hear them say "oh, i know so and so and they are 50 and have it" like it is no big deal when we struggle daily with so many medications, treatments, precautions, dietary issues, etc. etc. we are also soooo compliant, day in and out, and when she had her 2 year xray her doc said they showed "normal cf progression". i guess my whole point is that i feel so many "take cf lightly" because they simply dont understand and/or dont wish to understand the complexities of it. (wearing rose colored glasses) ahhh, ok....just needed to vent!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[crickit715]

harriett,
<br /> i feel exactly the same way you do! i want to scream when i feel like someone is "minimizing" cf or what needs to be done to effectively help control the disease progression. i have strived to know the ins and outs of cf, of the df508 mutation and exactly how it functions/doesnt function on the cell level. i also absolutley NEED to understand this disease to cope with all that cf encompasses. i think my issue with this isnt so much that i am overly concerned about what "they" THINK will happen, as i am about seemingly false or misleading info being reported in what seems to be an effort to minimize the severity of the disease. part of me wants to go wild when i have to tell someone about sophies cf and then to hear them say "oh, i know so and so and they are 50 and have it" like it is no big deal when we struggle daily with so many medications, treatments, precautions, dietary issues, etc. etc. we are also soooo compliant, day in and out, and when she had her 2 year xray her doc said they showed "normal cf progression". i guess my whole point is that i feel so many "take cf lightly" because they simply dont understand and/or dont wish to understand the complexities of it. (wearing rose colored glasses) ahhh, ok....just needed to vent!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kitomd21]

Most people I speak to about CF reply with the intonation of sympathy and sadness that I may lose my daughter soon. I'm very realistic about CF and the fact that it's a progressive disease, but CF today isn't the same as CF ten years ago. I acknowledge that my daughter may not reach a certain age. I chose to be more optimistic so as not to look at her everyday and wonder if this will be the year that things turn for the worse. We are also very compliant. I appreciate every moment with her and don't focus on the numbers. You simply can't and will not get an answer that satisfies. Median? Average? Percentages? They mean nothing other than life expectancy continues to rise due to recent therapies.

In addition, some merit should be granted to the medical staff that have "known" CF longer than we have. These are the individuals who have treated our children and some of you...these are the people that have seen treatments evolve into more effective measures in combating this horrid condition. They cannot guarantee that my daughter will live to any age, but their first-hand experiences in treatment cannot be overlooked. We'll still see children pass away before the age of one and we'll see people living well beyond their 37th year. The main truth is we just don't know the severity of the progression of CF.

 

[kitomd21]

Most people I speak to about CF reply with the intonation of sympathy and sadness that I may lose my daughter soon. I'm very realistic about CF and the fact that it's a progressive disease, but CF today isn't the same as CF ten years ago. I acknowledge that my daughter may not reach a certain age. I chose to be more optimistic so as not to look at her everyday and wonder if this will be the year that things turn for the worse. We are also very compliant. I appreciate every moment with her and don't focus on the numbers. You simply can't and will not get an answer that satisfies. Median? Average? Percentages? They mean nothing other than life expectancy continues to rise due to recent therapies.

In addition, some merit should be granted to the medical staff that have "known" CF longer than we have. These are the individuals who have treated our children and some of you...these are the people that have seen treatments evolve into more effective measures in combating this horrid condition. They cannot guarantee that my daughter will live to any age, but their first-hand experiences in treatment cannot be overlooked. We'll still see children pass away before the age of one and we'll see people living well beyond their 37th year. The main truth is we just don't know the severity of the progression of CF.

 

[kitomd21]

Most people I speak to about CF reply with the intonation of sympathy and sadness that I may lose my daughter soon. I'm very realistic about CF and the fact that it's a progressive disease, but CF today isn't the same as CF ten years ago. I acknowledge that my daughter may not reach a certain age. I chose to be more optimistic so as not to look at her everyday and wonder if this will be the year that things turn for the worse. We are also very compliant. I appreciate every moment with her and don't focus on the numbers. You simply can't and will not get an answer that satisfies. Median? Average? Percentages? They mean nothing other than life expectancy continues to rise due to recent therapies.
<br />
<br />In addition, some merit should be granted to the medical staff that have "known" CF longer than we have. These are the individuals who have treated our children and some of you...these are the people that have seen treatments evolve into more effective measures in combating this horrid condition. They cannot guarantee that my daughter will live to any age, but their first-hand experiences in treatment cannot be overlooked. We'll still see children pass away before the age of one and we'll see people living well beyond their 37th year. The main truth is we just don't know the severity of the progression of CF.

 

[Mommafirst]

Katie -- I get what you are saying, and I'm right there with you on almost everything you said.

But you say that CF today is not the same as it was 10 years ago...and to that I ask, "how can we know this?" If we are basing it on new therapies in the pipeline, that doesn't really predict anything. If we are basing it on "median age of survival" -- well that's the whole point of the thread. Where are they getting these numbers???

I have done enough research to see that meds like pulmozyme, tobi, & cayston and even compliance gaining treatment options the VEST and acapella, etc. HAVE changed the face of CF. But when little kids die at a year old or 7 or 15... it doesn't seem like CF has changed that much.

Like all the others that have responded, I'm not consumed by the numbers. They don't mean much to me, but they do help me explain the disease a bit and with this conflicting information I am concered about what we are getting is a line of bull and what we are getting is real.

 

[Mommafirst]

Katie -- I get what you are saying, and I'm right there with you on almost everything you said.

But you say that CF today is not the same as it was 10 years ago...and to that I ask, "how can we know this?" If we are basing it on new therapies in the pipeline, that doesn't really predict anything. If we are basing it on "median age of survival" -- well that's the whole point of the thread. Where are they getting these numbers???

I have done enough research to see that meds like pulmozyme, tobi, & cayston and even compliance gaining treatment options the VEST and acapella, etc. HAVE changed the face of CF. But when little kids die at a year old or 7 or 15... it doesn't seem like CF has changed that much.

Like all the others that have responded, I'm not consumed by the numbers. They don't mean much to me, but they do help me explain the disease a bit and with this conflicting information I am concered about what we are getting is a line of bull and what we are getting is real.

 

[Mommafirst]

Katie -- I get what you are saying, and I'm right there with you on almost everything you said.
<br />
<br />But you say that CF today is not the same as it was 10 years ago...and to that I ask, "how can we know this?" If we are basing it on new therapies in the pipeline, that doesn't really predict anything. If we are basing it on "median age of survival" -- well that's the whole point of the thread. Where are they getting these numbers???
<br />
<br />I have done enough research to see that meds like pulmozyme, tobi, & cayston and even compliance gaining treatment options the VEST and acapella, etc. HAVE changed the face of CF. But when little kids die at a year old or 7 or 15... it doesn't seem like CF has changed that much.
<br />
<br />Like all the others that have responded, I'm not consumed by the numbers. They don't mean much to me, but they do help me explain the disease a bit and with this conflicting information I am concered about what we are getting is a line of bull and what we are getting is real.

 

[hmw]

Heather- perfectly said. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

Heather- perfectly said. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

Heather- perfectly said. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />

 

[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!