Please help me, im losing it

CARMEL

New member
HI MELISSA,

I JUST NOW HAPPENED UPONT THIS WEBSITE. I'M HORRIBLE ON THE COMPUTER AND TYPE QUIT SLOWLY. I HOPE YOU RECEIVE THIS.

I'M A MOM OF A CF CHILD. WELL, NOW SHE'S AN ADULT. iF YOU CONSIDER 20 YEARS OLD AN ADULT.

MY DAUGHTER CANDICE FINALLY RECEIVED A DOUBLE LUNG TRANSPLANT 3 MONTHS AGO. I'VE BEEN THROUGH IT ALL.

I'M NOT A "KNOW IT ALL", BUT I HAVE BEEN, EXCUSE THE EXPRESSION, TO HELL AND BACK.

I'VE NEVER BEEN ON A CHAT LINE, SO ALL I KNOW IS ID YOU RECEIVE THIS, I'LL HELP YOU ANYWAY I CAN.

I REMEMBER MY FIRST DAY. I REMEMBER EVERY DAY. IF I'VE MADE IT THROUGH ALL THIS, ANYONE CAN. NOT REALLY. YOU HAVE TO KEEP SOOOOO STRONG.

I DON'T KNOW IF YOUR MARRIED BUT, YOU NEED EACH OTHER NOW.

I RARELY SLEEP SO YOU CAN RESPOND ANYTIME.



CARMEL
 

CARMEL

New member
HI MELISSA,

I JUST NOW HAPPENED UPONT THIS WEBSITE. I'M HORRIBLE ON THE COMPUTER AND TYPE QUIT SLOWLY. I HOPE YOU RECEIVE THIS.

I'M A MOM OF A CF CHILD. WELL, NOW SHE'S AN ADULT. iF YOU CONSIDER 20 YEARS OLD AN ADULT.

MY DAUGHTER CANDICE FINALLY RECEIVED A DOUBLE LUNG TRANSPLANT 3 MONTHS AGO. I'VE BEEN THROUGH IT ALL.

I'M NOT A "KNOW IT ALL", BUT I HAVE BEEN, EXCUSE THE EXPRESSION, TO HELL AND BACK.

I'VE NEVER BEEN ON A CHAT LINE, SO ALL I KNOW IS ID YOU RECEIVE THIS, I'LL HELP YOU ANYWAY I CAN.

I REMEMBER MY FIRST DAY. I REMEMBER EVERY DAY. IF I'VE MADE IT THROUGH ALL THIS, ANYONE CAN. NOT REALLY. YOU HAVE TO KEEP SOOOOO STRONG.

I DON'T KNOW IF YOUR MARRIED BUT, YOU NEED EACH OTHER NOW.

I RARELY SLEEP SO YOU CAN RESPOND ANYTIME.



CARMEL
 

CARMEL

New member
HI MELISSA,

I JUST NOW HAPPENED UPONT THIS WEBSITE. I'M HORRIBLE ON THE COMPUTER AND TYPE QUIT SLOWLY. I HOPE YOU RECEIVE THIS.

I'M A MOM OF A CF CHILD. WELL, NOW SHE'S AN ADULT. iF YOU CONSIDER 20 YEARS OLD AN ADULT.

MY DAUGHTER CANDICE FINALLY RECEIVED A DOUBLE LUNG TRANSPLANT 3 MONTHS AGO. I'VE BEEN THROUGH IT ALL.

I'M NOT A "KNOW IT ALL", BUT I HAVE BEEN, EXCUSE THE EXPRESSION, TO HELL AND BACK.

I'VE NEVER BEEN ON A CHAT LINE, SO ALL I KNOW IS ID YOU RECEIVE THIS, I'LL HELP YOU ANYWAY I CAN.

I REMEMBER MY FIRST DAY. I REMEMBER EVERY DAY. IF I'VE MADE IT THROUGH ALL THIS, ANYONE CAN. NOT REALLY. YOU HAVE TO KEEP SOOOOO STRONG.

I DON'T KNOW IF YOUR MARRIED BUT, YOU NEED EACH OTHER NOW.

I RARELY SLEEP SO YOU CAN RESPOND ANYTIME.



CARMEL
 

CARMEL

New member
HI MELISSA,

I JUST NOW HAPPENED UPONT THIS WEBSITE. I'M HORRIBLE ON THE COMPUTER AND TYPE QUIT SLOWLY. I HOPE YOU RECEIVE THIS.

I'M A MOM OF A CF CHILD. WELL, NOW SHE'S AN ADULT. iF YOU CONSIDER 20 YEARS OLD AN ADULT.

MY DAUGHTER CANDICE FINALLY RECEIVED A DOUBLE LUNG TRANSPLANT 3 MONTHS AGO. I'VE BEEN THROUGH IT ALL.

I'M NOT A "KNOW IT ALL", BUT I HAVE BEEN, EXCUSE THE EXPRESSION, TO HELL AND BACK.

I'VE NEVER BEEN ON A CHAT LINE, SO ALL I KNOW IS ID YOU RECEIVE THIS, I'LL HELP YOU ANYWAY I CAN.

I REMEMBER MY FIRST DAY. I REMEMBER EVERY DAY. IF I'VE MADE IT THROUGH ALL THIS, ANYONE CAN. NOT REALLY. YOU HAVE TO KEEP SOOOOO STRONG.

I DON'T KNOW IF YOUR MARRIED BUT, YOU NEED EACH OTHER NOW.

I RARELY SLEEP SO YOU CAN RESPOND ANYTIME.



CARMEL
 

CARMEL

New member
HI MELISSA,
<br />
<br />I JUST NOW HAPPENED UPONT THIS WEBSITE. I'M HORRIBLE ON THE COMPUTER AND TYPE QUIT SLOWLY. I HOPE YOU RECEIVE THIS.
<br />
<br />I'M A MOM OF A CF CHILD. WELL, NOW SHE'S AN ADULT. iF YOU CONSIDER 20 YEARS OLD AN ADULT.
<br />
<br />MY DAUGHTER CANDICE FINALLY RECEIVED A DOUBLE LUNG TRANSPLANT 3 MONTHS AGO. I'VE BEEN THROUGH IT ALL.
<br />
<br />I'M NOT A "KNOW IT ALL", BUT I HAVE BEEN, EXCUSE THE EXPRESSION, TO HELL AND BACK.
<br />
<br />I'VE NEVER BEEN ON A CHAT LINE, SO ALL I KNOW IS ID YOU RECEIVE THIS, I'LL HELP YOU ANYWAY I CAN.
<br />
<br />I REMEMBER MY FIRST DAY. I REMEMBER EVERY DAY. IF I'VE MADE IT THROUGH ALL THIS, ANYONE CAN. NOT REALLY. YOU HAVE TO KEEP SOOOOO STRONG.
<br />
<br />I DON'T KNOW IF YOUR MARRIED BUT, YOU NEED EACH OTHER NOW.
<br />
<br />I RARELY SLEEP SO YOU CAN RESPOND ANYTIME.
<br />
<br />
<br />
<br />CARMEL
 

MargaritaChic

New member
My daughter was diagnosed through newborn screening. My understanding is they look for elevated IRT? If that comes back then they genetically test the blood for the most common gene mutations assosiated with CF. Each states testing my be a little different. Where are you located?

Your daughter's test came back positive for only 1 of the most common mutations. Classically a person needs to have 2 gene mutations to have CF. Unfortunately, when they are testing for the most common mutations, they are usually only testing for about 32. There are about 1500 known CF mutations. This is why your child now needs to have more tesing done. To make sure she does not have another less common mutation that did not show up on the initial test.


Take a deep breath. Unfortunately you are not going to get instant answers. But it is wonderful that your state does newborn screening (some states do not). If she does have it then she can be treated early before she is exhibiting any signs.

But try not to get ahead of yourself. Your child has not been diagnosed with CF.

It is a good sign that she is gaining weight. Enjoy your baby. She needs her momma to love! Enjoy every minute with her because before you know it she will be a teenager! lol
 

MargaritaChic

New member
My daughter was diagnosed through newborn screening. My understanding is they look for elevated IRT? If that comes back then they genetically test the blood for the most common gene mutations assosiated with CF. Each states testing my be a little different. Where are you located?

Your daughter's test came back positive for only 1 of the most common mutations. Classically a person needs to have 2 gene mutations to have CF. Unfortunately, when they are testing for the most common mutations, they are usually only testing for about 32. There are about 1500 known CF mutations. This is why your child now needs to have more tesing done. To make sure she does not have another less common mutation that did not show up on the initial test.


Take a deep breath. Unfortunately you are not going to get instant answers. But it is wonderful that your state does newborn screening (some states do not). If she does have it then she can be treated early before she is exhibiting any signs.

But try not to get ahead of yourself. Your child has not been diagnosed with CF.

It is a good sign that she is gaining weight. Enjoy your baby. She needs her momma to love! Enjoy every minute with her because before you know it she will be a teenager! lol
 

MargaritaChic

New member
My daughter was diagnosed through newborn screening. My understanding is they look for elevated IRT? If that comes back then they genetically test the blood for the most common gene mutations assosiated with CF. Each states testing my be a little different. Where are you located?

Your daughter's test came back positive for only 1 of the most common mutations. Classically a person needs to have 2 gene mutations to have CF. Unfortunately, when they are testing for the most common mutations, they are usually only testing for about 32. There are about 1500 known CF mutations. This is why your child now needs to have more tesing done. To make sure she does not have another less common mutation that did not show up on the initial test.


Take a deep breath. Unfortunately you are not going to get instant answers. But it is wonderful that your state does newborn screening (some states do not). If she does have it then she can be treated early before she is exhibiting any signs.

But try not to get ahead of yourself. Your child has not been diagnosed with CF.

It is a good sign that she is gaining weight. Enjoy your baby. She needs her momma to love! Enjoy every minute with her because before you know it she will be a teenager! lol
 

MargaritaChic

New member
My daughter was diagnosed through newborn screening. My understanding is they look for elevated IRT? If that comes back then they genetically test the blood for the most common gene mutations assosiated with CF. Each states testing my be a little different. Where are you located?

Your daughter's test came back positive for only 1 of the most common mutations. Classically a person needs to have 2 gene mutations to have CF. Unfortunately, when they are testing for the most common mutations, they are usually only testing for about 32. There are about 1500 known CF mutations. This is why your child now needs to have more tesing done. To make sure she does not have another less common mutation that did not show up on the initial test.


Take a deep breath. Unfortunately you are not going to get instant answers. But it is wonderful that your state does newborn screening (some states do not). If she does have it then she can be treated early before she is exhibiting any signs.

But try not to get ahead of yourself. Your child has not been diagnosed with CF.

It is a good sign that she is gaining weight. Enjoy your baby. She needs her momma to love! Enjoy every minute with her because before you know it she will be a teenager! lol
 

MargaritaChic

New member
My daughter was diagnosed through newborn screening. My understanding is they look for elevated IRT? If that comes back then they genetically test the blood for the most common gene mutations assosiated with CF. Each states testing my be a little different. Where are you located?
<br />
<br />Your daughter's test came back positive for only 1 of the most common mutations. Classically a person needs to have 2 gene mutations to have CF. Unfortunately, when they are testing for the most common mutations, they are usually only testing for about 32. There are about 1500 known CF mutations. This is why your child now needs to have more tesing done. To make sure she does not have another less common mutation that did not show up on the initial test.
<br />
<br />
<br />Take a deep breath. Unfortunately you are not going to get instant answers. But it is wonderful that your state does newborn screening (some states do not). If she does have it then she can be treated early before she is exhibiting any signs.
<br />
<br />But try not to get ahead of yourself. Your child has not been diagnosed with CF.
<br />
<br />It is a good sign that she is gaining weight. Enjoy your baby. She needs her momma to love! Enjoy every minute with her because before you know it she will be a teenager! lol
 

melissa81

New member
Im in massachusetts. Its not a mndtory test, it was optional, and since it didnt require extra blood drawn on her, i said yes to it.

I don't want to say im in denial here, but i just think this is so out of the ordinary for our amily and i dont have a feeling that something is wrong.

when i completely lost it last friday, i spoke i\with the dr from the lab. She told me my baby had a 95% chance of being fine, and a 1-5% chance of being diagnosed....
she said she'd be very shocked if she did and then said she still wanted me to go to the sweat test. <- this made me feel better but it also makes me question the whole test now. I dont know. I know its better to know or not know, but m first week home with my child has been ruined by this, and i cant get thse days back. <img src="i/expressions/face-icon-small-sad.gif" border="0">
i just want her to be happy and healthy.
 

melissa81

New member
Im in massachusetts. Its not a mndtory test, it was optional, and since it didnt require extra blood drawn on her, i said yes to it.

I don't want to say im in denial here, but i just think this is so out of the ordinary for our amily and i dont have a feeling that something is wrong.

when i completely lost it last friday, i spoke i\with the dr from the lab. She told me my baby had a 95% chance of being fine, and a 1-5% chance of being diagnosed....
she said she'd be very shocked if she did and then said she still wanted me to go to the sweat test. <- this made me feel better but it also makes me question the whole test now. I dont know. I know its better to know or not know, but m first week home with my child has been ruined by this, and i cant get thse days back. <img src="i/expressions/face-icon-small-sad.gif" border="0">
i just want her to be happy and healthy.
 

melissa81

New member
Im in massachusetts. Its not a mndtory test, it was optional, and since it didnt require extra blood drawn on her, i said yes to it.

I don't want to say im in denial here, but i just think this is so out of the ordinary for our amily and i dont have a feeling that something is wrong.

when i completely lost it last friday, i spoke i\with the dr from the lab. She told me my baby had a 95% chance of being fine, and a 1-5% chance of being diagnosed....
she said she'd be very shocked if she did and then said she still wanted me to go to the sweat test. <- this made me feel better but it also makes me question the whole test now. I dont know. I know its better to know or not know, but m first week home with my child has been ruined by this, and i cant get thse days back. <img src="i/expressions/face-icon-small-sad.gif" border="0">
i just want her to be happy and healthy.
 

melissa81

New member
Im in massachusetts. Its not a mndtory test, it was optional, and since it didnt require extra blood drawn on her, i said yes to it.

I don't want to say im in denial here, but i just think this is so out of the ordinary for our amily and i dont have a feeling that something is wrong.

when i completely lost it last friday, i spoke i\with the dr from the lab. She told me my baby had a 95% chance of being fine, and a 1-5% chance of being diagnosed....
she said she'd be very shocked if she did and then said she still wanted me to go to the sweat test. <- this made me feel better but it also makes me question the whole test now. I dont know. I know its better to know or not know, but m first week home with my child has been ruined by this, and i cant get thse days back. <img src="i/expressions/face-icon-small-sad.gif" border="0">
i just want her to be happy and healthy.
 

melissa81

New member
Im in massachusetts. Its not a mndtory test, it was optional, and since it didnt require extra blood drawn on her, i said yes to it.
<br />
<br />I don't want to say im in denial here, but i just think this is so out of the ordinary for our amily and i dont have a feeling that something is wrong.
<br />
<br />when i completely lost it last friday, i spoke i\with the dr from the lab. She told me my baby had a 95% chance of being fine, and a 1-5% chance of being diagnosed....
<br />she said she'd be very shocked if she did and then said she still wanted me to go to the sweat test. <- this made me feel better but it also makes me question the whole test now. I dont know. I know its better to know or not know, but m first week home with my child has been ruined by this, and i cant get thse days back. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />i just want her to be happy and healthy.
 
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