Another morbid question...

[Mommafirst]

Katie -- yes, I think this is an incredibly hard question to wrap our brains around. Just because the median age has increased, there are still kids dying!! Sometimes all the great prevention, medicine, and care just don't matter and it SUCKS!! And its totally unfair.

It would be fabulous, to appease ourselves, as Carrie has, by thinking that we are somehow smarter, more involved, or a better parent than those whose kids have it bad and thus we can avoid that fate by doing something. But unfortunately, Carrie, you are living in an illusion. I'm sure it was a self-preservation denial that has induced this illusion, but its not a healthy place to be.

We parents NEED to be proactive and do all we can to reap the benefits of the advances CF has made. But that is no guarantee that our child won't get an even shorter end of the stick than they have already gotten. It is SOOOO NOT the parents fault. Lots of parents do EVERYTHING they possibly can and yet still their sweet children have gotten an unfair blow with their CF.

This disease is unpredictable. I hope that you never have to face the reality of having done everything you could and it still not being enough. I hope none of us do, but I know in my heart that many of us have and will. <img src="i/expressions/brokenheart.gif" border="0">

 

[Mommafirst]

Katie -- yes, I think this is an incredibly hard question to wrap our brains around. Just because the median age has increased, there are still kids dying!! Sometimes all the great prevention, medicine, and care just don't matter and it SUCKS!! And its totally unfair.

It would be fabulous, to appease ourselves, as Carrie has, by thinking that we are somehow smarter, more involved, or a better parent than those whose kids have it bad and thus we can avoid that fate by doing something. But unfortunately, Carrie, you are living in an illusion. I'm sure it was a self-preservation denial that has induced this illusion, but its not a healthy place to be.

We parents NEED to be proactive and do all we can to reap the benefits of the advances CF has made. But that is no guarantee that our child won't get an even shorter end of the stick than they have already gotten. It is SOOOO NOT the parents fault. Lots of parents do EVERYTHING they possibly can and yet still their sweet children have gotten an unfair blow with their CF.

This disease is unpredictable. I hope that you never have to face the reality of having done everything you could and it still not being enough. I hope none of us do, but I know in my heart that many of us have and will. <img src="i/expressions/brokenheart.gif" border="0">

 

[Mommafirst]

Katie -- yes, I think this is an incredibly hard question to wrap our brains around. Just because the median age has increased, there are still kids dying!! Sometimes all the great prevention, medicine, and care just don't matter and it SUCKS!! And its totally unfair.

It would be fabulous, to appease ourselves, as Carrie has, by thinking that we are somehow smarter, more involved, or a better parent than those whose kids have it bad and thus we can avoid that fate by doing something. But unfortunately, Carrie, you are living in an illusion. I'm sure it was a self-preservation denial that has induced this illusion, but its not a healthy place to be.

We parents NEED to be proactive and do all we can to reap the benefits of the advances CF has made. But that is no guarantee that our child won't get an even shorter end of the stick than they have already gotten. It is SOOOO NOT the parents fault. Lots of parents do EVERYTHING they possibly can and yet still their sweet children have gotten an unfair blow with their CF.

This disease is unpredictable. I hope that you never have to face the reality of having done everything you could and it still not being enough. I hope none of us do, but I know in my heart that many of us have and will. <img src="i/expressions/brokenheart.gif" border="0">

 

[Mommafirst]

Katie -- yes, I think this is an incredibly hard question to wrap our brains around. Just because the median age has increased, there are still kids dying!! Sometimes all the great prevention, medicine, and care just don't matter and it SUCKS!! And its totally unfair.

It would be fabulous, to appease ourselves, as Carrie has, by thinking that we are somehow smarter, more involved, or a better parent than those whose kids have it bad and thus we can avoid that fate by doing something. But unfortunately, Carrie, you are living in an illusion. I'm sure it was a self-preservation denial that has induced this illusion, but its not a healthy place to be.

We parents NEED to be proactive and do all we can to reap the benefits of the advances CF has made. But that is no guarantee that our child won't get an even shorter end of the stick than they have already gotten. It is SOOOO NOT the parents fault. Lots of parents do EVERYTHING they possibly can and yet still their sweet children have gotten an unfair blow with their CF.

This disease is unpredictable. I hope that you never have to face the reality of having done everything you could and it still not being enough. I hope none of us do, but I know in my heart that many of us have and will. <img src="i/expressions/brokenheart.gif" border="0">

 

[Mommafirst]

Katie -- yes, I think this is an incredibly hard question to wrap our brains around. Just because the median age has increased, there are still kids dying!! Sometimes all the great prevention, medicine, and care just don't matter and it SUCKS!! And its totally unfair.
<br />
<br />It would be fabulous, to appease ourselves, as Carrie has, by thinking that we are somehow smarter, more involved, or a better parent than those whose kids have it bad and thus we can avoid that fate by doing something. But unfortunately, Carrie, you are living in an illusion. I'm sure it was a self-preservation denial that has induced this illusion, but its not a healthy place to be.
<br />
<br />We parents NEED to be proactive and do all we can to reap the benefits of the advances CF has made. But that is no guarantee that our child won't get an even shorter end of the stick than they have already gotten. It is SOOOO NOT the parents fault. Lots of parents do EVERYTHING they possibly can and yet still their sweet children have gotten an unfair blow with their CF.
<br />
<br />This disease is unpredictable. I hope that you never have to face the reality of having done everything you could and it still not being enough. I hope none of us do, but I know in my heart that many of us have and will. <img src="i/expressions/brokenheart.gif" border="0">
<br />
<br />
<br />

 

[carrierae21]

Okay, I obviously offended a lot of people and that was not at all my intention and I am very sorry. I am truely, truely sorry. I work in OB and I see really great parents and really not great parents and everywhere inbetween. I guess my comment was more along those basis then anything else. I think that it's sad when we have to send home a baby with their parents and we know that the best care that baby will ever get was the 2 or 3 days he or she was in our hospital in our care. I know that anyone on this site is obviously dedicated to their child more than anything else in their world! I know that this disease takes on a life of its own and there is nothing that parents can do to make thier child better. The genes are a huge factor and I also believe that the way the cards are dealt makes a difference. Again, I am so sorry to have offended anyone with my original post. And I hope that I didn't offend anyone with this post. I honestly wasn't directing those comments at anyone on this site and I was careless. I didn't think before I posted...

 

[carrierae21]

Okay, I obviously offended a lot of people and that was not at all my intention and I am very sorry. I am truely, truely sorry. I work in OB and I see really great parents and really not great parents and everywhere inbetween. I guess my comment was more along those basis then anything else. I think that it's sad when we have to send home a baby with their parents and we know that the best care that baby will ever get was the 2 or 3 days he or she was in our hospital in our care. I know that anyone on this site is obviously dedicated to their child more than anything else in their world! I know that this disease takes on a life of its own and there is nothing that parents can do to make thier child better. The genes are a huge factor and I also believe that the way the cards are dealt makes a difference. Again, I am so sorry to have offended anyone with my original post. And I hope that I didn't offend anyone with this post. I honestly wasn't directing those comments at anyone on this site and I was careless. I didn't think before I posted...

 

[carrierae21]

Okay, I obviously offended a lot of people and that was not at all my intention and I am very sorry. I am truely, truely sorry. I work in OB and I see really great parents and really not great parents and everywhere inbetween. I guess my comment was more along those basis then anything else. I think that it's sad when we have to send home a baby with their parents and we know that the best care that baby will ever get was the 2 or 3 days he or she was in our hospital in our care. I know that anyone on this site is obviously dedicated to their child more than anything else in their world! I know that this disease takes on a life of its own and there is nothing that parents can do to make thier child better. The genes are a huge factor and I also believe that the way the cards are dealt makes a difference. Again, I am so sorry to have offended anyone with my original post. And I hope that I didn't offend anyone with this post. I honestly wasn't directing those comments at anyone on this site and I was careless. I didn't think before I posted...

 

[carrierae21]

Okay, I obviously offended a lot of people and that was not at all my intention and I am very sorry. I am truely, truely sorry. I work in OB and I see really great parents and really not great parents and everywhere inbetween. I guess my comment was more along those basis then anything else. I think that it's sad when we have to send home a baby with their parents and we know that the best care that baby will ever get was the 2 or 3 days he or she was in our hospital in our care. I know that anyone on this site is obviously dedicated to their child more than anything else in their world! I know that this disease takes on a life of its own and there is nothing that parents can do to make thier child better. The genes are a huge factor and I also believe that the way the cards are dealt makes a difference. Again, I am so sorry to have offended anyone with my original post. And I hope that I didn't offend anyone with this post. I honestly wasn't directing those comments at anyone on this site and I was careless. I didn't think before I posted...

 

[carrierae21]

Okay, I obviously offended a lot of people and that was not at all my intention and I am very sorry. I am truely, truely sorry. I work in OB and I see really great parents and really not great parents and everywhere inbetween. I guess my comment was more along those basis then anything else. I think that it's sad when we have to send home a baby with their parents and we know that the best care that baby will ever get was the 2 or 3 days he or she was in our hospital in our care. I know that anyone on this site is obviously dedicated to their child more than anything else in their world! I know that this disease takes on a life of its own and there is nothing that parents can do to make thier child better. The genes are a huge factor and I also believe that the way the cards are dealt makes a difference. Again, I am so sorry to have offended anyone with my original post. And I hope that I didn't offend anyone with this post. I honestly wasn't directing those comments at anyone on this site and I was careless. I didn't think before I posted...

 

[S]

i think a lot comes down to the actual cf genes we are given. i think i remember hearing or seeing something regarding double delta508's having a "healthier" form of cf. both my sister and i have those genes and seem to do much better healthwise than a lot of others we know with different combinations. neither of us have digestion issues. my sis has been in the hospital maybe 5-6 times inn her 27 years. I am in the hospital 3-4 times a year, but am still relatively healthy in terms of my disease. pft's are in the low 50's, but they have been at that lever for what seems like 10 years now with no real fluctuation.

 

[S]

i think a lot comes down to the actual cf genes we are given. i think i remember hearing or seeing something regarding double delta508's having a "healthier" form of cf. both my sister and i have those genes and seem to do much better healthwise than a lot of others we know with different combinations. neither of us have digestion issues. my sis has been in the hospital maybe 5-6 times inn her 27 years. I am in the hospital 3-4 times a year, but am still relatively healthy in terms of my disease. pft's are in the low 50's, but they have been at that lever for what seems like 10 years now with no real fluctuation.

 

[S]

i think a lot comes down to the actual cf genes we are given. i think i remember hearing or seeing something regarding double delta508's having a "healthier" form of cf. both my sister and i have those genes and seem to do much better healthwise than a lot of others we know with different combinations. neither of us have digestion issues. my sis has been in the hospital maybe 5-6 times inn her 27 years. I am in the hospital 3-4 times a year, but am still relatively healthy in terms of my disease. pft's are in the low 50's, but they have been at that lever for what seems like 10 years now with no real fluctuation.

 

[S]

i think a lot comes down to the actual cf genes we are given. i think i remember hearing or seeing something regarding double delta508's having a "healthier" form of cf. both my sister and i have those genes and seem to do much better healthwise than a lot of others we know with different combinations. neither of us have digestion issues. my sis has been in the hospital maybe 5-6 times inn her 27 years. I am in the hospital 3-4 times a year, but am still relatively healthy in terms of my disease. pft's are in the low 50's, but they have been at that lever for what seems like 10 years now with no real fluctuation.

 

[S]

i think a lot comes down to the actual cf genes we are given. i think i remember hearing or seeing something regarding double delta508's having a "healthier" form of cf. both my sister and i have those genes and seem to do much better healthwise than a lot of others we know with different combinations. neither of us have digestion issues. my sis has been in the hospital maybe 5-6 times inn her 27 years. I am in the hospital 3-4 times a year, but am still relatively healthy in terms of my disease. pft's are in the low 50's, but they have been at that lever for what seems like 10 years now with no real fluctuation.

 

[kmaried]

Hello all,

I'm a 26 year old girl who was diagnosed at 3 months due to a bowel obstruction. I'm double df508. My lung function is in the mid 60's. I have a number of complications, but I work full time and manage to have a somewhat normal life... I'm getting married next summer!

I didn't have lung involvement at all until I was a bit older. I didn't do any nebulizer treatments until I was about 16 (when TOBI and pulmo started being widely used). I didn't do CPT until I was 18 and got the vest. Manual CPT never seemed to do me any good, and the doctors said, if it doesn't help, don't do it. I was on a low fat diet b/c when I was young, my doctor thought it was better to eat low fat and minimize the number of enzymes you need. My Dad was a chain-smoker and I grew up in a cloud of smoke.

I now work my butt off for my health and do everything as instructed. My only point of telling you all the above is that my parents didn't do anything better than these kid's parents now that wind up losing their battle so early. Not that any of this was my parents' fault (with the exception of the smoking!! argh) -- they just went along with what the doctors told them to do in the 80's.

Kris

 

[kmaried]

Hello all,

I'm a 26 year old girl who was diagnosed at 3 months due to a bowel obstruction. I'm double df508. My lung function is in the mid 60's. I have a number of complications, but I work full time and manage to have a somewhat normal life... I'm getting married next summer!

I didn't have lung involvement at all until I was a bit older. I didn't do any nebulizer treatments until I was about 16 (when TOBI and pulmo started being widely used). I didn't do CPT until I was 18 and got the vest. Manual CPT never seemed to do me any good, and the doctors said, if it doesn't help, don't do it. I was on a low fat diet b/c when I was young, my doctor thought it was better to eat low fat and minimize the number of enzymes you need. My Dad was a chain-smoker and I grew up in a cloud of smoke.

I now work my butt off for my health and do everything as instructed. My only point of telling you all the above is that my parents didn't do anything better than these kid's parents now that wind up losing their battle so early. Not that any of this was my parents' fault (with the exception of the smoking!! argh) -- they just went along with what the doctors told them to do in the 80's.

Kris

 

[kmaried]

Hello all,

I'm a 26 year old girl who was diagnosed at 3 months due to a bowel obstruction. I'm double df508. My lung function is in the mid 60's. I have a number of complications, but I work full time and manage to have a somewhat normal life... I'm getting married next summer!

I didn't have lung involvement at all until I was a bit older. I didn't do any nebulizer treatments until I was about 16 (when TOBI and pulmo started being widely used). I didn't do CPT until I was 18 and got the vest. Manual CPT never seemed to do me any good, and the doctors said, if it doesn't help, don't do it. I was on a low fat diet b/c when I was young, my doctor thought it was better to eat low fat and minimize the number of enzymes you need. My Dad was a chain-smoker and I grew up in a cloud of smoke.

I now work my butt off for my health and do everything as instructed. My only point of telling you all the above is that my parents didn't do anything better than these kid's parents now that wind up losing their battle so early. Not that any of this was my parents' fault (with the exception of the smoking!! argh) -- they just went along with what the doctors told them to do in the 80's.

Kris

 

[kmaried]

Hello all,

I'm a 26 year old girl who was diagnosed at 3 months due to a bowel obstruction. I'm double df508. My lung function is in the mid 60's. I have a number of complications, but I work full time and manage to have a somewhat normal life... I'm getting married next summer!

I didn't have lung involvement at all until I was a bit older. I didn't do any nebulizer treatments until I was about 16 (when TOBI and pulmo started being widely used). I didn't do CPT until I was 18 and got the vest. Manual CPT never seemed to do me any good, and the doctors said, if it doesn't help, don't do it. I was on a low fat diet b/c when I was young, my doctor thought it was better to eat low fat and minimize the number of enzymes you need. My Dad was a chain-smoker and I grew up in a cloud of smoke.

I now work my butt off for my health and do everything as instructed. My only point of telling you all the above is that my parents didn't do anything better than these kid's parents now that wind up losing their battle so early. Not that any of this was my parents' fault (with the exception of the smoking!! argh) -- they just went along with what the doctors told them to do in the 80's.

Kris

 

[kmaried]

Hello all,
<br />
<br />I'm a 26 year old girl who was diagnosed at 3 months due to a bowel obstruction. I'm double df508. My lung function is in the mid 60's. I have a number of complications, but I work full time and manage to have a somewhat normal life... I'm getting married next summer!
<br />
<br />I didn't have lung involvement at all until I was a bit older. I didn't do any nebulizer treatments until I was about 16 (when TOBI and pulmo started being widely used). I didn't do CPT until I was 18 and got the vest. Manual CPT never seemed to do me any good, and the doctors said, if it doesn't help, don't do it. I was on a low fat diet b/c when I was young, my doctor thought it was better to eat low fat and minimize the number of enzymes you need. My Dad was a chain-smoker and I grew up in a cloud of smoke.
<br />
<br />I now work my butt off for my health and do everything as instructed. My only point of telling you all the above is that my parents didn't do anything better than these kid's parents now that wind up losing their battle so early. Not that any of this was my parents' fault (with the exception of the smoking!! argh) -- they just went along with what the doctors told them to do in the 80's.
<br />
<br />Kris