I'm so scared

dbtoo · Aug 18, 2008

You control what you envision. Envision her at 110! Envision her at the top of Mt. Everest. Envision her in the olympics. Then envision yourself helping her to make it happen.

[soapbox]
Don't EVER listen to the propaganda about death. Some die young, some die old. Where's the focus? On the young - Why, people will never donate money if you say 1/2 the people live till they are 50! [/soapbox]

So the numbers are magic points for gift giving and funding of clinics. They cannot play into what you ever expect of your child! 

I just referenced this in another thread... <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=32641&catid=1953">What if tomorrow comes? </a> It has relevance here too.

dbtoo · Aug 18, 2008

You control what you envision. Envision her at 110! Envision her at the top of Mt. Everest. Envision her in the olympics. Then envision yourself helping her to make it happen.

[soapbox]
Don't EVER listen to the propaganda about death. Some die young, some die old. Where's the focus? On the young - Why, people will never donate money if you say 1/2 the people live till they are 50! [/soapbox]

So the numbers are magic points for gift giving and funding of clinics. They cannot play into what you ever expect of your child! 

I just referenced this in another thread... <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=32641&catid=1953">What if tomorrow comes? </a> It has relevance here too.

dbtoo · Aug 18, 2008

You control what you envision. Envision her at 110! Envision her at the top of Mt. Everest. Envision her in the olympics. Then envision yourself helping her to make it happen.

[soapbox]
Don't EVER listen to the propaganda about death. Some die young, some die old. Where's the focus? On the young - Why, people will never donate money if you say 1/2 the people live till they are 50! [/soapbox]

So the numbers are magic points for gift giving and funding of clinics. They cannot play into what you ever expect of your child! 

I just referenced this in another thread... <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=32641&catid=1953">What if tomorrow comes? </a> It has relevance here too.

dbtoo · Aug 18, 2008

You control what you envision. Envision her at 110! Envision her at the top of Mt. Everest. Envision her in the olympics. Then envision yourself helping her to make it happen.

[soapbox]
Don't EVER listen to the propaganda about death. Some die young, some die old. Where's the focus? On the young - Why, people will never donate money if you say 1/2 the people live till they are 50! [/soapbox]

So the numbers are magic points for gift giving and funding of clinics. They cannot play into what you ever expect of your child! 

I just referenced this in another thread... <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=32641&catid=1953">What if tomorrow comes? </a> It has relevance here too.

dbtoo · Aug 18, 2008

You control what you envision. Envision her at 110! Envision her at the top of Mt. Everest. Envision her in the olympics. Then envision yourself helping her to make it happen.
 
 [soapbox]
 Don't EVER listen to the propaganda about death. Some die young, some die old. Where's the focus? On the young - Why, people will never donate money if you say 1/2 the people live till they are 50! [/soapbox]
 
 So the numbers are magic points for gift giving and funding of clinics. They cannot play into what you ever expect of your child! 
 
 I just referenced this in another thread... <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=32641&catid=1953">What if tomorrow comes? </a> It has relevance here too.

NYCLawGirl · Aug 18, 2008

I don't post on here often anymore, but this is one of those posts that I feel compelled to answer. In part because it describes such a genuine emotional response so many of us have to CF and in part because I think this is a place where actual cystics/cfers can be really helpful.

This is a tough thread to respond to, IMO. Tough because talk of longevity and life expectancy requires the CF community to walk a fine line between hope/optimism and not invalidating the reality of some people who are affected with more severe forms of this disease. So I apologize in advance if my answer isn't only focused on the positive...I think the harder stuff should be addressed as well.

The tough news is that there are no guarantees about life expectancy with this disease. I have worked with the CFF and, despite what people love to claim, the numbers they give are not just fundraising tools. They are accurately reporting the data that comes in from clinics across the country. The median life expectancy for a person with CF is in the late 30s. 1/2 of the patient population does not, sadly, live to be 50. Right now about half the patient population living with CF is over 18. If you think about it, that statistic alone shows that the age of death from this disease is way too young, and a quick visit to the memorial section of this site will also confirm that. As a cystic in my mid-20s, I wish to God this wasn't so, but it is. The simple truth is that a lot of people with CF do not live normal lifespans.

The flip side of that coin, however, is that just as the life expectancy number does not guarantee a child with CF 40+ years, it also does not guarantee that they will not live well beyond that. dbtoo above is awesome proof of that, as our some other members here. I myself was diagnosed at 6 weeks old with severe symptoms, I have struggled a lot with lung issues through the years and am on IVs every couple of months, and yet I am 26 with a college and law degree, and I work full time. CF has not limited what I have done with my life in many ways, and I fully intend to keep living each day as though CF won't get the better of me for a long time to come. My PFT numbers may be low, but my life is full and wonderful.

That said, if the option is between frightened worrying about what might happen and hopeful dreaming about what could just as easily happen, I'd definitely take the latter.

NYCLawGirl · Aug 18, 2008

I don't post on here often anymore, but this is one of those posts that I feel compelled to answer. In part because it describes such a genuine emotional response so many of us have to CF and in part because I think this is a place where actual cystics/cfers can be really helpful.

This is a tough thread to respond to, IMO. Tough because talk of longevity and life expectancy requires the CF community to walk a fine line between hope/optimism and not invalidating the reality of some people who are affected with more severe forms of this disease. So I apologize in advance if my answer isn't only focused on the positive...I think the harder stuff should be addressed as well.

The tough news is that there are no guarantees about life expectancy with this disease. I have worked with the CFF and, despite what people love to claim, the numbers they give are not just fundraising tools. They are accurately reporting the data that comes in from clinics across the country. The median life expectancy for a person with CF is in the late 30s. 1/2 of the patient population does not, sadly, live to be 50. Right now about half the patient population living with CF is over 18. If you think about it, that statistic alone shows that the age of death from this disease is way too young, and a quick visit to the memorial section of this site will also confirm that. As a cystic in my mid-20s, I wish to God this wasn't so, but it is. The simple truth is that a lot of people with CF do not live normal lifespans.

The flip side of that coin, however, is that just as the life expectancy number does not guarantee a child with CF 40+ years, it also does not guarantee that they will not live well beyond that. dbtoo above is awesome proof of that, as our some other members here. I myself was diagnosed at 6 weeks old with severe symptoms, I have struggled a lot with lung issues through the years and am on IVs every couple of months, and yet I am 26 with a college and law degree, and I work full time. CF has not limited what I have done with my life in many ways, and I fully intend to keep living each day as though CF won't get the better of me for a long time to come. My PFT numbers may be low, but my life is full and wonderful.

That said, if the option is between frightened worrying about what might happen and hopeful dreaming about what could just as easily happen, I'd definitely take the latter.

NYCLawGirl · Aug 18, 2008

I don't post on here often anymore, but this is one of those posts that I feel compelled to answer. In part because it describes such a genuine emotional response so many of us have to CF and in part because I think this is a place where actual cystics/cfers can be really helpful.

This is a tough thread to respond to, IMO. Tough because talk of longevity and life expectancy requires the CF community to walk a fine line between hope/optimism and not invalidating the reality of some people who are affected with more severe forms of this disease. So I apologize in advance if my answer isn't only focused on the positive...I think the harder stuff should be addressed as well.

The tough news is that there are no guarantees about life expectancy with this disease. I have worked with the CFF and, despite what people love to claim, the numbers they give are not just fundraising tools. They are accurately reporting the data that comes in from clinics across the country. The median life expectancy for a person with CF is in the late 30s. 1/2 of the patient population does not, sadly, live to be 50. Right now about half the patient population living with CF is over 18. If you think about it, that statistic alone shows that the age of death from this disease is way too young, and a quick visit to the memorial section of this site will also confirm that. As a cystic in my mid-20s, I wish to God this wasn't so, but it is. The simple truth is that a lot of people with CF do not live normal lifespans.

The flip side of that coin, however, is that just as the life expectancy number does not guarantee a child with CF 40+ years, it also does not guarantee that they will not live well beyond that. dbtoo above is awesome proof of that, as our some other members here. I myself was diagnosed at 6 weeks old with severe symptoms, I have struggled a lot with lung issues through the years and am on IVs every couple of months, and yet I am 26 with a college and law degree, and I work full time. CF has not limited what I have done with my life in many ways, and I fully intend to keep living each day as though CF won't get the better of me for a long time to come. My PFT numbers may be low, but my life is full and wonderful.

That said, if the option is between frightened worrying about what might happen and hopeful dreaming about what could just as easily happen, I'd definitely take the latter.

NYCLawGirl · Aug 18, 2008

I don't post on here often anymore, but this is one of those posts that I feel compelled to answer. In part because it describes such a genuine emotional response so many of us have to CF and in part because I think this is a place where actual cystics/cfers can be really helpful.

This is a tough thread to respond to, IMO. Tough because talk of longevity and life expectancy requires the CF community to walk a fine line between hope/optimism and not invalidating the reality of some people who are affected with more severe forms of this disease. So I apologize in advance if my answer isn't only focused on the positive...I think the harder stuff should be addressed as well.

The tough news is that there are no guarantees about life expectancy with this disease. I have worked with the CFF and, despite what people love to claim, the numbers they give are not just fundraising tools. They are accurately reporting the data that comes in from clinics across the country. The median life expectancy for a person with CF is in the late 30s. 1/2 of the patient population does not, sadly, live to be 50. Right now about half the patient population living with CF is over 18. If you think about it, that statistic alone shows that the age of death from this disease is way too young, and a quick visit to the memorial section of this site will also confirm that. As a cystic in my mid-20s, I wish to God this wasn't so, but it is. The simple truth is that a lot of people with CF do not live normal lifespans.

The flip side of that coin, however, is that just as the life expectancy number does not guarantee a child with CF 40+ years, it also does not guarantee that they will not live well beyond that. dbtoo above is awesome proof of that, as our some other members here. I myself was diagnosed at 6 weeks old with severe symptoms, I have struggled a lot with lung issues through the years and am on IVs every couple of months, and yet I am 26 with a college and law degree, and I work full time. CF has not limited what I have done with my life in many ways, and I fully intend to keep living each day as though CF won't get the better of me for a long time to come. My PFT numbers may be low, but my life is full and wonderful.

That said, if the option is between frightened worrying about what might happen and hopeful dreaming about what could just as easily happen, I'd definitely take the latter.

NYCLawGirl · Aug 18, 2008

I don't post on here often anymore, but this is one of those posts that I feel compelled to answer. In part because it describes such a genuine emotional response so many of us have to CF and in part because I think this is a place where actual cystics/cfers can be really helpful.
 
 This is a tough thread to respond to, IMO. Tough because talk of longevity and life expectancy requires the CF community to walk a fine line between hope/optimism and not invalidating the reality of some people who are affected with more severe forms of this disease. So I apologize in advance if my answer isn't only focused on the positive...I think the harder stuff should be addressed as well.
 
 The tough news is that there are no guarantees about life expectancy with this disease. I have worked with the CFF and, despite what people love to claim, the numbers they give are not just fundraising tools. They are accurately reporting the data that comes in from clinics across the country. The median life expectancy for a person with CF is in the late 30s. 1/2 of the patient population does not, sadly, live to be 50. Right now about half the patient population living with CF is over 18. If you think about it, that statistic alone shows that the age of death from this disease is way too young, and a quick visit to the memorial section of this site will also confirm that. As a cystic in my mid-20s, I wish to God this wasn't so, but it is. The simple truth is that a lot of people with CF do not live normal lifespans.
 
 The flip side of that coin, however, is that just as the life expectancy number does not guarantee a child with CF 40+ years, it also does not guarantee that they will not live well beyond that. dbtoo above is awesome proof of that, as our some other members here. I myself was diagnosed at 6 weeks old with severe symptoms, I have struggled a lot with lung issues through the years and am on IVs every couple of months, and yet I am 26 with a college and law degree, and I work full time. CF has not limited what I have done with my life in many ways, and I fully intend to keep living each day as though CF won't get the better of me for a long time to come. My PFT numbers may be low, but my life is full and wonderful.
 
 That said, if the option is between frightened worrying about what might happen and hopeful dreaming about what could just as easily happen, I'd definitely take the latter.

NYCLawGirl · Aug 18, 2008

I should also add that the life expectancy reflects the CURRENT reality, which of course is the reality of an older CF population that didn't have the advantage of a lot of the new therapies out there until we were a bit older. So there is even more reason for the parents of young CFers today to be optimistic. When I was born the median life expectancy, I believe, was at 18. Excuse the trite expression, but we've come a long way, baby.

NYCLawGirl · Aug 18, 2008

I should also add that the life expectancy reflects the CURRENT reality, which of course is the reality of an older CF population that didn't have the advantage of a lot of the new therapies out there until we were a bit older. So there is even more reason for the parents of young CFers today to be optimistic. When I was born the median life expectancy, I believe, was at 18. Excuse the trite expression, but we've come a long way, baby.

NYCLawGirl · Aug 18, 2008

I should also add that the life expectancy reflects the CURRENT reality, which of course is the reality of an older CF population that didn't have the advantage of a lot of the new therapies out there until we were a bit older. So there is even more reason for the parents of young CFers today to be optimistic. When I was born the median life expectancy, I believe, was at 18. Excuse the trite expression, but we've come a long way, baby.

NYCLawGirl · Aug 18, 2008

I should also add that the life expectancy reflects the CURRENT reality, which of course is the reality of an older CF population that didn't have the advantage of a lot of the new therapies out there until we were a bit older. So there is even more reason for the parents of young CFers today to be optimistic. When I was born the median life expectancy, I believe, was at 18. Excuse the trite expression, but we've come a long way, baby.

NYCLawGirl · Aug 18, 2008

I should also add that the life expectancy reflects the CURRENT reality, which of course is the reality of an older CF population that didn't have the advantage of a lot of the new therapies out there until we were a bit older. So there is even more reason for the parents of young CFers today to be optimistic. When I was born the median life expectancy, I believe, was at 18. Excuse the trite expression, but we've come a long way, baby.

Giggles · Aug 18, 2008

NO it is not bad!!! Yes it is difficult but with that comes maturity and the love of life and people. Treat her as though all is normal and this is just something she has to deal with. My parents made me NOT feel different at all! We just did what we had to do and went on with life and dealt with the ups and downs as they came. My parents just acted like doing my meds and therapies was just something I had to do like brushing your teeth. NO big deal was made of it we just did it and treated it like it was just something like I had to do like brushing my teeth. They instilled in me to keep my body as healthy as possible so one day when the cure comes I can benefit from it. Yes CF sucks and it is okay to be sad about it but not for long. I allow myself to feel bad and then few hours to the next day I move on. I know it must be so hard as a parent to see your child go through all this. But if you can just show her that this is what needs to be done, make it fun and laugh through it you will instill in her that she can make it through anything!!!

Stay strong!

Jennifer 36 years old with CF and CFRD

PS: Sometimes reading too much in my opinion about others who have CF can make one a bit crazy and scared. Yes it is good to know what is out there and be aware but I take it with a grain of salt. All CF cases are so very different. So lean on your doctors, family and take in the information as needed. I always talk to my doctor about new ideas or things I have read. But please know CF is different for everyone and what one person goes through does not necessarily mean you will go through that. Just my opinion. <img src="">

PSS: I strongly believe in EXERCISE. Keep it up all your life to help fight the CF. It helps even when you are down! I firmly believe that bouncing back comes from staying as healthy as one can all the time and exercise is the magic key. For me that is.

Giggles · Aug 18, 2008

NO it is not bad!!! Yes it is difficult but with that comes maturity and the love of life and people. Treat her as though all is normal and this is just something she has to deal with. My parents made me NOT feel different at all! We just did what we had to do and went on with life and dealt with the ups and downs as they came. My parents just acted like doing my meds and therapies was just something I had to do like brushing your teeth. NO big deal was made of it we just did it and treated it like it was just something like I had to do like brushing my teeth. They instilled in me to keep my body as healthy as possible so one day when the cure comes I can benefit from it. Yes CF sucks and it is okay to be sad about it but not for long. I allow myself to feel bad and then few hours to the next day I move on. I know it must be so hard as a parent to see your child go through all this. But if you can just show her that this is what needs to be done, make it fun and laugh through it you will instill in her that she can make it through anything!!!

Stay strong!

Jennifer 36 years old with CF and CFRD

PS: Sometimes reading too much in my opinion about others who have CF can make one a bit crazy and scared. Yes it is good to know what is out there and be aware but I take it with a grain of salt. All CF cases are so very different. So lean on your doctors, family and take in the information as needed. I always talk to my doctor about new ideas or things I have read. But please know CF is different for everyone and what one person goes through does not necessarily mean you will go through that. Just my opinion. <img src="">

PSS: I strongly believe in EXERCISE. Keep it up all your life to help fight the CF. It helps even when you are down! I firmly believe that bouncing back comes from staying as healthy as one can all the time and exercise is the magic key. For me that is.

Giggles · Aug 18, 2008

NO it is not bad!!! Yes it is difficult but with that comes maturity and the love of life and people. Treat her as though all is normal and this is just something she has to deal with. My parents made me NOT feel different at all! We just did what we had to do and went on with life and dealt with the ups and downs as they came. My parents just acted like doing my meds and therapies was just something I had to do like brushing your teeth. NO big deal was made of it we just did it and treated it like it was just something like I had to do like brushing my teeth. They instilled in me to keep my body as healthy as possible so one day when the cure comes I can benefit from it. Yes CF sucks and it is okay to be sad about it but not for long. I allow myself to feel bad and then few hours to the next day I move on. I know it must be so hard as a parent to see your child go through all this. But if you can just show her that this is what needs to be done, make it fun and laugh through it you will instill in her that she can make it through anything!!!

Stay strong!

Jennifer 36 years old with CF and CFRD

PS: Sometimes reading too much in my opinion about others who have CF can make one a bit crazy and scared. Yes it is good to know what is out there and be aware but I take it with a grain of salt. All CF cases are so very different. So lean on your doctors, family and take in the information as needed. I always talk to my doctor about new ideas or things I have read. But please know CF is different for everyone and what one person goes through does not necessarily mean you will go through that. Just my opinion. <img src="">

PSS: I strongly believe in EXERCISE. Keep it up all your life to help fight the CF. It helps even when you are down! I firmly believe that bouncing back comes from staying as healthy as one can all the time and exercise is the magic key. For me that is.

Giggles · Aug 18, 2008

NO it is not bad!!! Yes it is difficult but with that comes maturity and the love of life and people. Treat her as though all is normal and this is just something she has to deal with. My parents made me NOT feel different at all! We just did what we had to do and went on with life and dealt with the ups and downs as they came. My parents just acted like doing my meds and therapies was just something I had to do like brushing your teeth. NO big deal was made of it we just did it and treated it like it was just something like I had to do like brushing my teeth. They instilled in me to keep my body as healthy as possible so one day when the cure comes I can benefit from it. Yes CF sucks and it is okay to be sad about it but not for long. I allow myself to feel bad and then few hours to the next day I move on. I know it must be so hard as a parent to see your child go through all this. But if you can just show her that this is what needs to be done, make it fun and laugh through it you will instill in her that she can make it through anything!!!

Stay strong!

Jennifer 36 years old with CF and CFRD

PS: Sometimes reading too much in my opinion about others who have CF can make one a bit crazy and scared. Yes it is good to know what is out there and be aware but I take it with a grain of salt. All CF cases are so very different. So lean on your doctors, family and take in the information as needed. I always talk to my doctor about new ideas or things I have read. But please know CF is different for everyone and what one person goes through does not necessarily mean you will go through that. Just my opinion. <img src="">

PSS: I strongly believe in EXERCISE. Keep it up all your life to help fight the CF. It helps even when you are down! I firmly believe that bouncing back comes from staying as healthy as one can all the time and exercise is the magic key. For me that is.

Giggles · Aug 18, 2008

NO it is not bad!!! Yes it is difficult but with that comes maturity and the love of life and people. Treat her as though all is normal and this is just something she has to deal with. My parents made me NOT feel different at all! We just did what we had to do and went on with life and dealt with the ups and downs as they came. My parents just acted like doing my meds and therapies was just something I had to do like brushing your teeth. NO big deal was made of it we just did it and treated it like it was just something like I had to do like brushing my teeth. They instilled in me to keep my body as healthy as possible so one day when the cure comes I can benefit from it. Yes CF sucks and it is okay to be sad about it but not for long. I allow myself to feel bad and then few hours to the next day I move on. I know it must be so hard as a parent to see your child go through all this. But if you can just show her that this is what needs to be done, make it fun and laugh through it you will instill in her that she can make it through anything!!!
 
 Stay strong!
 
 Jennifer 36 years old with CF and CFRD
 
 PS: Sometimes reading too much in my opinion about others who have CF can make one a bit crazy and scared. Yes it is good to know what is out there and be aware but I take it with a grain of salt. All CF cases are so very different. So lean on your doctors, family and take in the information as needed. I always talk to my doctor about new ideas or things I have read. But please know CF is different for everyone and what one person goes through does not necessarily mean you will go through that. Just my opinion. <img src="">
 
 PSS: I strongly believe in EXERCISE. Keep it up all your life to help fight the CF. It helps even when you are down! I firmly believe that bouncing back comes from staying as healthy as one can all the time and exercise is the magic key. For me that is.

I'm so scared

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