Sitting here in tears and am shocked (update)

LouLou

New member
I should rephrase that... We wanted to have hubby tested for conception purposes and my cf doctor suggested that he submit the test so that insurance would cover it. The cf doctor knew we were testing DH for carrier status. Also, he mentioned that he wouldn't be writing the order for "carrier testing" but rather "cf testing" as carrier testing sets off a red "conception" flag.
 

LouLou

New member
I should rephrase that... We wanted to have hubby tested for conception purposes and my cf doctor suggested that he submit the test so that insurance would cover it. The cf doctor knew we were testing DH for carrier status. Also, he mentioned that he wouldn't be writing the order for "carrier testing" but rather "cf testing" as carrier testing sets off a red "conception" flag.
 

LouLou

New member
I should rephrase that... We wanted to have hubby tested for conception purposes and my cf doctor suggested that he submit the test so that insurance would cover it. The cf doctor knew we were testing DH for carrier status. Also, he mentioned that he wouldn't be writing the order for "carrier testing" but rather "cf testing" as carrier testing sets off a red "conception" flag.
 

LouLou

New member
I should rephrase that... We wanted to have hubby tested for conception purposes and my cf doctor suggested that he submit the test so that insurance would cover it. The cf doctor knew we were testing DH for carrier status. Also, he mentioned that he wouldn't be writing the order for "carrier testing" but rather "cf testing" as carrier testing sets off a red "conception" flag.
 

zoeg

New member
Hi Khristina!

I thought I'd add to this discussion...

My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even being glad to have a nonsense gene in the long run.

Also, I know that the genes really don't matter a ton, but I will tell you my mother in law is 60 with CF and doing AWESOME! VEry healthy and does not even see a CF dr. (which don't get me started how I don't really want that as a role model for Kate.) She has one Class 1 mutation and the other is unknown. So long story short, a Class 1 doesn't mean an awful case of CF at all. We are hoping Kate will end up as healthy as her grandma (seeing her good CF clinic though! <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

Zoe, mom to Kate wCF
 

zoeg

New member
Hi Khristina!

I thought I'd add to this discussion...

My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even being glad to have a nonsense gene in the long run.

Also, I know that the genes really don't matter a ton, but I will tell you my mother in law is 60 with CF and doing AWESOME! VEry healthy and does not even see a CF dr. (which don't get me started how I don't really want that as a role model for Kate.) She has one Class 1 mutation and the other is unknown. So long story short, a Class 1 doesn't mean an awful case of CF at all. We are hoping Kate will end up as healthy as her grandma (seeing her good CF clinic though! <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

Zoe, mom to Kate wCF
 

zoeg

New member
Hi Khristina!

I thought I'd add to this discussion...

My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even being glad to have a nonsense gene in the long run.

Also, I know that the genes really don't matter a ton, but I will tell you my mother in law is 60 with CF and doing AWESOME! VEry healthy and does not even see a CF dr. (which don't get me started how I don't really want that as a role model for Kate.) She has one Class 1 mutation and the other is unknown. So long story short, a Class 1 doesn't mean an awful case of CF at all. We are hoping Kate will end up as healthy as her grandma (seeing her good CF clinic though! <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

Zoe, mom to Kate wCF
 

zoeg

New member
Hi Khristina!

I thought I'd add to this discussion...

My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even being glad to have a nonsense gene in the long run.

Also, I know that the genes really don't matter a ton, but I will tell you my mother in law is 60 with CF and doing AWESOME! VEry healthy and does not even see a CF dr. (which don't get me started how I don't really want that as a role model for Kate.) She has one Class 1 mutation and the other is unknown. So long story short, a Class 1 doesn't mean an awful case of CF at all. We are hoping Kate will end up as healthy as her grandma (seeing her good CF clinic though! <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

Zoe, mom to Kate wCF
 

zoeg

New member
Hi Khristina!

I thought I'd add to this discussion...

My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even being glad to have a nonsense gene in the long run.

Also, I know that the genes really don't matter a ton, but I will tell you my mother in law is 60 with CF and doing AWESOME! VEry healthy and does not even see a CF dr. (which don't get me started how I don't really want that as a role model for Kate.) She has one Class 1 mutation and the other is unknown. So long story short, a Class 1 doesn't mean an awful case of CF at all. We are hoping Kate will end up as healthy as her grandma (seeing her good CF clinic though! <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

Zoe, mom to Kate wCF
 

zoeg

New member
Hi Khristina!

I thought I'd add to this discussion...

My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even being glad to have a nonsense gene in the long run.

Also, I know that the genes really don't matter a ton, but I will tell you my mother in law is 60 with CF and doing AWESOME! VEry healthy and does not even see a CF dr. (which don't get me started how I don't really want that as a role model for Kate.) She has one Class 1 mutation and the other is unknown. So long story short, a Class 1 doesn't mean an awful case of CF at all. We are hoping Kate will end up as healthy as her grandma (seeing her good CF clinic though! <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

Zoe, mom to Kate wCF
 

karismom

New member
The relative frequency of that mutation is 1.2% as opposed to 66% DDF508! Hon do not let it get to you!!! MEANS NOTHING AS FAR AS YOUR PROGNOSIS! As i have posted BOTH my chix have DDF508 and their med histories could NOT be any different if they tried! I feel the these days there is WAY TOO MUCH emphasis on the mutations. CF is CF!!! It'll be OKAY... just BREATHE, relax as much as possible. and do not sweat the small stuff (no pun intended).
HUGS to you.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 

karismom

New member
The relative frequency of that mutation is 1.2% as opposed to 66% DDF508! Hon do not let it get to you!!! MEANS NOTHING AS FAR AS YOUR PROGNOSIS! As i have posted BOTH my chix have DDF508 and their med histories could NOT be any different if they tried! I feel the these days there is WAY TOO MUCH emphasis on the mutations. CF is CF!!! It'll be OKAY... just BREATHE, relax as much as possible. and do not sweat the small stuff (no pun intended).
HUGS to you.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 

karismom

New member
The relative frequency of that mutation is 1.2% as opposed to 66% DDF508! Hon do not let it get to you!!! MEANS NOTHING AS FAR AS YOUR PROGNOSIS! As i have posted BOTH my chix have DDF508 and their med histories could NOT be any different if they tried! I feel the these days there is WAY TOO MUCH emphasis on the mutations. CF is CF!!! It'll be OKAY... just BREATHE, relax as much as possible. and do not sweat the small stuff (no pun intended).
HUGS to you.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 

karismom

New member
The relative frequency of that mutation is 1.2% as opposed to 66% DDF508! Hon do not let it get to you!!! MEANS NOTHING AS FAR AS YOUR PROGNOSIS! As i have posted BOTH my chix have DDF508 and their med histories could NOT be any different if they tried! I feel the these days there is WAY TOO MUCH emphasis on the mutations. CF is CF!!! It'll be OKAY... just BREATHE, relax as much as possible. and do not sweat the small stuff (no pun intended).
HUGS to you.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 

karismom

New member
The relative frequency of that mutation is 1.2% as opposed to 66% DDF508! Hon do not let it get to you!!! MEANS NOTHING AS FAR AS YOUR PROGNOSIS! As i have posted BOTH my chix have DDF508 and their med histories could NOT be any different if they tried! I feel the these days there is WAY TOO MUCH emphasis on the mutations. CF is CF!!! It'll be OKAY... just BREATHE, relax as much as possible. and do not sweat the small stuff (no pun intended).
HUGS to you.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 

karismom

New member
The relative frequency of that mutation is 1.2% as opposed to 66% DDF508! Hon do not let it get to you!!! MEANS NOTHING AS FAR AS YOUR PROGNOSIS! As i have posted BOTH my chix have DDF508 and their med histories could NOT be any different if they tried! I feel the these days there is WAY TOO MUCH emphasis on the mutations. CF is CF!!! It'll be OKAY... just BREATHE, relax as much as possible. and do not sweat the small stuff (no pun intended).
HUGS to you.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 

my65roses4me

New member
Well I just found out that my clinic once again is a mess.

As you can tell by this thread I was told that my genes were diff than what I had always believed to be true.

Now my clinic is telling me that my gentic results are back and I am

DF508 Homozygous

So from what I can gather that means that I am DDF508 like I thought all along. Man I am so pissed at my clinic right now! They cant seem to get things straight!!!!
 

my65roses4me

New member
Well I just found out that my clinic once again is a mess.

As you can tell by this thread I was told that my genes were diff than what I had always believed to be true.

Now my clinic is telling me that my gentic results are back and I am

DF508 Homozygous

So from what I can gather that means that I am DDF508 like I thought all along. Man I am so pissed at my clinic right now! They cant seem to get things straight!!!!
 

my65roses4me

New member
Well I just found out that my clinic once again is a mess.

As you can tell by this thread I was told that my genes were diff than what I had always believed to be true.

Now my clinic is telling me that my gentic results are back and I am

DF508 Homozygous

So from what I can gather that means that I am DDF508 like I thought all along. Man I am so pissed at my clinic right now! They cant seem to get things straight!!!!
 

my65roses4me

New member
Well I just found out that my clinic once again is a mess.

As you can tell by this thread I was told that my genes were diff than what I had always believed to be true.

Now my clinic is telling me that my gentic results are back and I am

DF508 Homozygous

So from what I can gather that means that I am DDF508 like I thought all along. Man I am so pissed at my clinic right now! They cant seem to get things straight!!!!
 
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