ok....im confused!!

[TestifyToLove]

I'm....

I don't even know what to say.

I knew CFF played with the numbers. just1more did an informal average from the memorials on this site and found the average to be 22. He spent a lot of time speaking with our CF center director and the man admitted his informal average was probably fairly close to accurate.

Its just...

I've held onto this hope and this stubborn determination that this child needed to see his 20th birthday. Everything about his life has been crap, absolute crap. Lousy bio-parents, severe complcations from his CF, liver cirrohsis (only 12% of CFers develop this complication, why HIM), not a candidate for a liver transplant, then Bipolar that requires liver taxing medication to stabilize him and finally Autism. In every opportunity God...the galaxy...whatever you want to call it...has had to give this child an acceptable hand in life or screw him over, he has been screwed over. And now, to see this. I already wasn't sure he was going to see 20. But, I hoped.

I continue to hope. But, tonight I feel absolutely sick to my stomach. Nothing in this child's life has EVER been fair. I guess I should quit waiting for him to finally catch a break. I should accept that there is nothing horrible I can protect him from, not even the reality of statistics of this disease.

I just really held out the belief that if the median was 37, an the average was likely early to mid 20s, then it wasn't unreasonable to hope he could see 20. Even after they told us no liver. Even after his vitamin levels started tanking. Even last week when we learned he's dropped to 5% in weight, despite 2200-2500cal/day. I still hoped we could get to 20. 20 seemed acceptable to believe that he had a real life at least and not the blink of an eye joke that his life thus far as been.

 

[TestifyToLove]

I'm....
<br />
<br />I don't even know what to say.
<br />
<br />I knew CFF played with the numbers. just1more did an informal average from the memorials on this site and found the average to be 22. He spent a lot of time speaking with our CF center director and the man admitted his informal average was probably fairly close to accurate.
<br />
<br />Its just...
<br />
<br />I've held onto this hope and this stubborn determination that this child needed to see his 20th birthday. Everything about his life has been crap, absolute crap. Lousy bio-parents, severe complcations from his CF, liver cirrohsis (only 12% of CFers develop this complication, why HIM), not a candidate for a liver transplant, then Bipolar that requires liver taxing medication to stabilize him and finally Autism. In every opportunity God...the galaxy...whatever you want to call it...has had to give this child an acceptable hand in life or screw him over, he has been screwed over. And now, to see this. I already wasn't sure he was going to see 20. But, I hoped.
<br />
<br />I continue to hope. But, tonight I feel absolutely sick to my stomach. Nothing in this child's life has EVER been fair. I guess I should quit waiting for him to finally catch a break. I should accept that there is nothing horrible I can protect him from, not even the reality of statistics of this disease.
<br />
<br />I just really held out the belief that if the median was 37, an the average was likely early to mid 20s, then it wasn't unreasonable to hope he could see 20. Even after they told us no liver. Even after his vitamin levels started tanking. Even last week when we learned he's dropped to 5% in weight, despite 2200-2500cal/day. I still hoped we could get to 20. 20 seemed acceptable to believe that he had a real life at least and not the blink of an eye joke that his life thus far as been.

 

[just1more]

Ok, here is some clarification on math terms. CFF is very good at picking the term they want.

Given the following 5 friends w/CF and the ages they passed:

A: 6
B: 17
C: 37
D: 41
E: 48

The Median is: 37 yrs

The Mean (Average) is: 29.8 yrs, almost a decade difference.

As for the 1/2 by 18, in the above example 40% died by age 18 so it is possible if you have enough data.

What CFF has done is plotted not 5 but thousands of #'s and picked the 'middle' number which is the median. It is in NO way tied to average or even likely age, but only the middle number.

Frankly, I have felt this was rather iffy since I first saw that they used median as most people don't realize the difference.

Regardless, it still sucks!

 

[just1more]

Ok, here is some clarification on math terms. CFF is very good at picking the term they want.

Given the following 5 friends w/CF and the ages they passed:

A: 6
B: 17
C: 37
D: 41
E: 48

The Median is: 37 yrs

The Mean (Average) is: 29.8 yrs, almost a decade difference.

As for the 1/2 by 18, in the above example 40% died by age 18 so it is possible if you have enough data.

What CFF has done is plotted not 5 but thousands of #'s and picked the 'middle' number which is the median. It is in NO way tied to average or even likely age, but only the middle number.

Frankly, I have felt this was rather iffy since I first saw that they used median as most people don't realize the difference.

Regardless, it still sucks!

 

[just1more]

Ok, here is some clarification on math terms. CFF is very good at picking the term they want.
<br />
<br />Given the following 5 friends w/CF and the ages they passed:
<br />
<br />A: 6
<br />B: 17
<br />C: 37
<br />D: 41
<br />E: 48
<br />
<br />The Median is: 37 yrs
<br />
<br />The Mean (Average) is: 29.8 yrs, almost a decade difference.
<br />
<br />As for the 1/2 by 18, in the above example 40% died by age 18 so it is possible if you have enough data.
<br />
<br />What CFF has done is plotted not 5 but thousands of #'s and picked the 'middle' number which is the median. It is in NO way tied to average or even likely age, but only the middle number.
<br />
<br />Frankly, I have felt this was rather iffy since I first saw that they used median as most people don't realize the difference.
<br />
<br />Regardless, it still sucks!

 

[hmw]

Is it even a 'real' middle number of any kind though, if they call it a 'projected' median average...? Or some kind of invented one based on trends and hopes they are spinning based on trends they pull from data in the registry? 'Projected' throws it all in an entirely new light.

Testifytolove... I know what you are saying. it made me feel utterly sick too, and while medically complex, my dd has not even faced as much as yours. But to feel hammered over and over with more @#%$... and then see this- yeah, what a kick in the teeth.

 

[hmw]

Is it even a 'real' middle number of any kind though, if they call it a 'projected' median average...? Or some kind of invented one based on trends and hopes they are spinning based on trends they pull from data in the registry? 'Projected' throws it all in an entirely new light.

Testifytolove... I know what you are saying. it made me feel utterly sick too, and while medically complex, my dd has not even faced as much as yours. But to feel hammered over and over with more @#%$... and then see this- yeah, what a kick in the teeth.

 

[hmw]

Is it even a 'real' middle number of any kind though, if they call it a 'projected' median average...? Or some kind of invented one based on trends and hopes they are spinning based on trends they pull from data in the registry? 'Projected' throws it all in an entirely new light.
<br />
<br />Testifytolove... I know what you are saying. it made me feel utterly sick too, and while medically complex, my dd has not even faced as much as yours. But to feel hammered over and over with more @#%$... and then see this- yeah, what a kick in the teeth.

 

[just1more]

You hit the nail on the head Harriett, reading their details a bit more this is what it 'appears' they did.

They took all the people that died from CF in a given year; then using that sample (no way to know if it was representative of the community as a whole) and guessed who might die this year. Thus it is projected based upon a years data, not say the last 5 or 10 years which by virtue of a larger sample would be more accurate.

 

[just1more]

You hit the nail on the head Harriett, reading their details a bit more this is what it 'appears' they did.

They took all the people that died from CF in a given year; then using that sample (no way to know if it was representative of the community as a whole) and guessed who might die this year. Thus it is projected based upon a years data, not say the last 5 or 10 years which by virtue of a larger sample would be more accurate.

 

[just1more]

You hit the nail on the head Harriett, reading their details a bit more this is what it 'appears' they did.
<br />
<br />They took all the people that died from CF in a given year; then using that sample (no way to know if it was representative of the community as a whole) and guessed who might die this year. Thus it is projected based upon a years data, not say the last 5 or 10 years which by virtue of a larger sample would be more accurate.

 

[MaksNana]

Well ricki,
the part where you are telling djfunkyfife--- thanks, I am in total agreement with both of you. I have known soooooo many little ones that have passed away, and Makailyn has been delt a tough hand with this Beast!

I hate it also, when you hear from the school , your family, the same thing that "cf isn't so bad after all". It is very misleading. When that child has been in the hospital about 8times since Xmas and put on Morphine for her pain, I want to kill someone that says,,,, "oh i always heard they live till they are at least 30 or more"!!!!

I posted on another site about a movie that is a TRUE STORY, called "EXTRODANRY MEASURES", it is great.It is fairly new, Harrison Ford plays the role of the Scientist. I wish all of non CF and CF people would watch it. It is about a genetic disease also, protien/sugar problems , takes 2 parents to carry the gene.

You will see the Political bull crap behind the scenes of the Medical field/Pharmacutical company's. But, the ended is the best, and I believe if they ever get an ending for CF, it will be in the same form.

I'v always known, if there is a cure it would be in the way of how it plays out in this movie.

AND FOR THE FIRST TIME , THIS MOVIE GAVE ME HOPE.....

Thanks for bringing up the topic, I always wanted to ,but,didn't know how some people would respond to it.

My heart and soul to all of us,,,,karla

 

[MaksNana]

Well ricki,
the part where you are telling djfunkyfife--- thanks, I am in total agreement with both of you. I have known soooooo many little ones that have passed away, and Makailyn has been delt a tough hand with this Beast!

I hate it also, when you hear from the school , your family, the same thing that "cf isn't so bad after all". It is very misleading. When that child has been in the hospital about 8times since Xmas and put on Morphine for her pain, I want to kill someone that says,,,, "oh i always heard they live till they are at least 30 or more"!!!!

I posted on another site about a movie that is a TRUE STORY, called "EXTRODANRY MEASURES", it is great.It is fairly new, Harrison Ford plays the role of the Scientist. I wish all of non CF and CF people would watch it. It is about a genetic disease also, protien/sugar problems , takes 2 parents to carry the gene.

You will see the Political bull crap behind the scenes of the Medical field/Pharmacutical company's. But, the ended is the best, and I believe if they ever get an ending for CF, it will be in the same form.

I'v always known, if there is a cure it would be in the way of how it plays out in this movie.

AND FOR THE FIRST TIME , THIS MOVIE GAVE ME HOPE.....

Thanks for bringing up the topic, I always wanted to ,but,didn't know how some people would respond to it.

My heart and soul to all of us,,,,karla

 

[MaksNana]

Well ricki,
<br />the part where you are telling djfunkyfife--- thanks, I am in total agreement with both of you. I have known soooooo many little ones that have passed away, and Makailyn has been delt a tough hand with this Beast!
<br />
<br />I hate it also, when you hear from the school , your family, the same thing that "cf isn't so bad after all". It is very misleading. When that child has been in the hospital about 8times since Xmas and put on Morphine for her pain, I want to kill someone that says,,,, "oh i always heard they live till they are at least 30 or more"!!!!
<br />
<br />I posted on another site about a movie that is a TRUE STORY, called "EXTRODANRY MEASURES", it is great.It is fairly new, Harrison Ford plays the role of the Scientist. I wish all of non CF and CF people would watch it. It is about a genetic disease also, protien/sugar problems , takes 2 parents to carry the gene.
<br />
<br />You will see the Political bull crap behind the scenes of the Medical field/Pharmacutical company's. But, the ended is the best, and I believe if they ever get an ending for CF, it will be in the same form.
<br />
<br />I'v always known, if there is a cure it would be in the way of how it plays out in this movie.
<br />
<br />AND FOR THE FIRST TIME , THIS MOVIE GAVE ME HOPE.....
<br />
<br />Thanks for bringing up the topic, I always wanted to ,but,didn't know how some people would respond to it.
<br />
<br />My heart and soul to all of us,,,,karla