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tough topic- portrayed life expectancy
- Thread starter imported_Momto2
- Start date
Wow....I just found out that I died almost 2 years ago. I need to sit down and take a breathe.
I agree--I wasn't cured by any means. Now my immune system is suppressed which causes problems I never knew existed--and my pancreas stopped working so I'm now a type I diabetic (wasn't pre-TX).
But the stat is true---CF did kill me. Medical science saved me. So, shouldn't that count twice? I died, AND I'm still alive.
I'm going to call my friends and tell them that according to the CFF, i'm dead. Wow......there are so many things wrong with that.
I agree--I wasn't cured by any means. Now my immune system is suppressed which causes problems I never knew existed--and my pancreas stopped working so I'm now a type I diabetic (wasn't pre-TX).
But the stat is true---CF did kill me. Medical science saved me. So, shouldn't that count twice? I died, AND I'm still alive.
I'm going to call my friends and tell them that according to the CFF, i'm dead. Wow......there are so many things wrong with that.
Wow....I just found out that I died almost 2 years ago. I need to sit down and take a breathe.
I agree--I wasn't cured by any means. Now my immune system is suppressed which causes problems I never knew existed--and my pancreas stopped working so I'm now a type I diabetic (wasn't pre-TX).
But the stat is true---CF did kill me. Medical science saved me. So, shouldn't that count twice? I died, AND I'm still alive.
I'm going to call my friends and tell them that according to the CFF, i'm dead. Wow......there are so many things wrong with that.
I agree--I wasn't cured by any means. Now my immune system is suppressed which causes problems I never knew existed--and my pancreas stopped working so I'm now a type I diabetic (wasn't pre-TX).
But the stat is true---CF did kill me. Medical science saved me. So, shouldn't that count twice? I died, AND I'm still alive.
I'm going to call my friends and tell them that according to the CFF, i'm dead. Wow......there are so many things wrong with that.
Wow....I just found out that I died almost 2 years ago. I need to sit down and take a breathe.
<br />
<br />I agree--I wasn't cured by any means. Now my immune system is suppressed which causes problems I never knew existed--and my pancreas stopped working so I'm now a type I diabetic (wasn't pre-TX).
<br />
<br />But the stat is true---CF did kill me. Medical science saved me. So, shouldn't that count twice? I died, AND I'm still alive.
<br />
<br />I'm going to call my friends and tell them that according to the CFF, i'm dead. Wow......there are so many things wrong with that.
<br />
<br />I agree--I wasn't cured by any means. Now my immune system is suppressed which causes problems I never knew existed--and my pancreas stopped working so I'm now a type I diabetic (wasn't pre-TX).
<br />
<br />But the stat is true---CF did kill me. Medical science saved me. So, shouldn't that count twice? I died, AND I'm still alive.
<br />
<br />I'm going to call my friends and tell them that according to the CFF, i'm dead. Wow......there are so many things wrong with that.
I would think that this would probably apply to anyone who needed a liver transplant as well due to their CF... and I do see the logic in it (without it, no one with a transplant would still be around.)
However, on the other hand- it sort of doesn't make sense either, since ALL the treatments we have now are due to advances in medical science and transplant can be considered as just another step forward in that regard. Without ALL the medical advances we've had over the years, people with CF would still be dying in childhood at the same rate they were just a few decades ago.
However, on the other hand- it sort of doesn't make sense either, since ALL the treatments we have now are due to advances in medical science and transplant can be considered as just another step forward in that regard. Without ALL the medical advances we've had over the years, people with CF would still be dying in childhood at the same rate they were just a few decades ago.
I would think that this would probably apply to anyone who needed a liver transplant as well due to their CF... and I do see the logic in it (without it, no one with a transplant would still be around.)
However, on the other hand- it sort of doesn't make sense either, since ALL the treatments we have now are due to advances in medical science and transplant can be considered as just another step forward in that regard. Without ALL the medical advances we've had over the years, people with CF would still be dying in childhood at the same rate they were just a few decades ago.
However, on the other hand- it sort of doesn't make sense either, since ALL the treatments we have now are due to advances in medical science and transplant can be considered as just another step forward in that regard. Without ALL the medical advances we've had over the years, people with CF would still be dying in childhood at the same rate they were just a few decades ago.
I would think that this would probably apply to anyone who needed a liver transplant as well due to their CF... and I do see the logic in it (without it, no one with a transplant would still be around.)
<br />
<br />However, on the other hand- it sort of doesn't make sense either, since ALL the treatments we have now are due to advances in medical science and transplant can be considered as just another step forward in that regard. Without ALL the medical advances we've had over the years, people with CF would still be dying in childhood at the same rate they were just a few decades ago.
<br />
<br />However, on the other hand- it sort of doesn't make sense either, since ALL the treatments we have now are due to advances in medical science and transplant can be considered as just another step forward in that regard. Without ALL the medical advances we've had over the years, people with CF would still be dying in childhood at the same rate they were just a few decades ago.
icefisherman
New member
I didn't mean to offend you, we all have our struggles. I was posting my opinion on the stance that the CFF takes. Its hard for all of us and trust me i am more than understanding. It is different for all of us. I just don't like how finding new "milder" genes has been portraid as advancement. When i was dx'ed there were 6 known genes. i don't know where they are at now but it is much more. What i was saying is the so called advancements are taking away from the severe cases that need the most help. I have lived a good life and would be the first to give anything to see a youngster with a severe case live to be an adult.
icefisherman
New member
I didn't mean to offend you, we all have our struggles. I was posting my opinion on the stance that the CFF takes.Its hard for all of usand trust me i am more than understanding. It is different for all of us. I just don't like how finding new "milder" genes has been portraid as advancement. When i was dx'ed there were 6 known genes. i don't know where they are at now but it is much more. What i was saying is the so called advancements are taking away from the severe cases that need the most help. I have lived a good life and would be the first to give anything to see a youngster with a severe case live to be an adult.
icefisherman
New member
<BR>I didn't mean to offend you, we all have our struggles. I was posting my opinion on the stance that the CFF takes.Its hard for all of usand trust me i am more than understanding. It is different for all of us. I just don't like how finding new "milder" genes has been portraid as advancement. When i was dx'ed there were 6 known genes. i don't know where they are at now but it is much more. What i was saying is the so called advancements are taking away from the severe cases that need the most help. I have lived a good life and would be the first to give anything to see a youngster with a severe case live to be an adult.
imported_Momto2
New member
icefisherman, I couldnt agree more with regard to how finding new milder genes has been portrayed as advancement in "health care". I support CFF a great deal, but some things they do piss me off. Such as this. I have lived a fabulous life, but none of the new medications, with the exception on the hypertonic saline, which my parents were making for me ANYWAY 25 years ago, has worked for at all. (my parents are smaaaaart people, they even kept me away from other CFers in the 1970's before it became fashionable) We moved closer to them a few years ago, so I could take care of them for a change. What goes around comes around.....who would have thunk.
imported_Momto2
New member
icefisherman, I couldnt agree more with regard to how finding new milder genes has been portrayed as advancement in "health care". I support CFF a great deal, but some things they do piss me off. Such as this. I have lived a fabulous life, but none of the new medications, with the exception on the hypertonic saline, which my parents were making for me ANYWAY 25 years ago, has worked for at all. (my parents are smaaaaart people, they even kept me away from other CFers in the 1970's before it became fashionable) We moved closer to them a few years ago, so I could take care of them for a change. What goes around comes around.....who would have thunk.
imported_Momto2
New member
icefisherman, I couldnt agree more with regard to how finding new milder genes has been portrayed as advancement in "health care". I support CFF a great deal, but some things they do piss me off. Such as this. I have lived a fabulous life, but none of the new medications, with the exception on the hypertonic saline, which my parents were making for me ANYWAY 25 years ago, has worked for at all. (my parents are smaaaaart people, they even kept me away from other CFers in the 1970's before it became fashionable) We moved closer to them a few years ago, so I could take care of them for a change. What goes around comes around.....who would have thunk.
Finding the large number of mutations out there via genetic testing IS an advancement in medical science, because it allows for earlier dx- and many of those mutations can and do cause severe disease. HOWEVER, many who are dx'ed much later in life with rare mutations clearly are not affected the same way as most of the CF population- so in addition to being an 'advancement', it really shows CF as the spectrum disease it is.
But like any spectrum, you are going to have EXTREMES that do *not* represent what the vast majority of those with this disease are realistically going to experience. Do the majority of those with CF die as newborns? Thank God, no. Do the majority of those with CF live to their 70's or beyond? Unfortunately, no. Everyone has 'heard of' those who have because they are so exceptionally rare out of the 30,000+ with the disease in this country!
It becomes a real problem when those that represent CF for the public (whether it's the CFF or some of the other organizations out there) take the 'healthiest' percentage of that spectrum and portray THEM as what the 'average' person with CF looks like/lives. That does a huge disservice to so the struggles of so many.
But like any spectrum, you are going to have EXTREMES that do *not* represent what the vast majority of those with this disease are realistically going to experience. Do the majority of those with CF die as newborns? Thank God, no. Do the majority of those with CF live to their 70's or beyond? Unfortunately, no. Everyone has 'heard of' those who have because they are so exceptionally rare out of the 30,000+ with the disease in this country!
It becomes a real problem when those that represent CF for the public (whether it's the CFF or some of the other organizations out there) take the 'healthiest' percentage of that spectrum and portray THEM as what the 'average' person with CF looks like/lives. That does a huge disservice to so the struggles of so many.
Finding the large number of mutations out there via genetic testing IS an advancement in medical science, because it allows for earlier dx- and many of those mutations can and do cause severe disease. HOWEVER, many who are dx'ed much later in life with rare mutations clearly are not affected the same way as most of the CF population- so in addition to being an 'advancement', it really shows CF as the spectrum disease it is.
But like any spectrum, you are going to have EXTREMES that do *not* represent what the vast majority of those with this disease are realistically going to experience. Do the majority of those with CF die as newborns? Thank God, no. Do the majority of those with CF live to their 70's or beyond? Unfortunately, no. Everyone has 'heard of' those who have because they are so exceptionally rare out of the 30,000+ with the disease in this country!
It becomes a real problem when those that represent CF for the public (whether it's the CFF or some of the other organizations out there) take the 'healthiest' percentage of that spectrum and portray THEM as what the 'average' person with CF looks like/lives. That does a huge disservice to so the struggles of so many.
But like any spectrum, you are going to have EXTREMES that do *not* represent what the vast majority of those with this disease are realistically going to experience. Do the majority of those with CF die as newborns? Thank God, no. Do the majority of those with CF live to their 70's or beyond? Unfortunately, no. Everyone has 'heard of' those who have because they are so exceptionally rare out of the 30,000+ with the disease in this country!
It becomes a real problem when those that represent CF for the public (whether it's the CFF or some of the other organizations out there) take the 'healthiest' percentage of that spectrum and portray THEM as what the 'average' person with CF looks like/lives. That does a huge disservice to so the struggles of so many.