Ambry Testing

C

ctalbott0609

New member
I've been keeping something to myself for a while now, and I don't feel that I can hide it any longer. A while back at one of Paige's CF visits, while discussing family history with our CF DR.; He became a little concerned over some things I told him. He decided that I needed to go to MY PCP and discuss with her the reality that I might have CF, and the need to be tested.

Well, I had a follow-up visit for my pregnancy with her on Wednesday, and as it turns out, after researching CF a bit...she's in agreement. Her nurse spent most of the day on the phone arguing with our insurance company, but finally, they decided to cover the testing. SO, tomorrow, I will be going to get blood drawn for a full panel Ambry test.

Other then my husband, and my mom, I've refrained from telling my friends and the rest of my family. The focus needs to be on Paige right now. I've survived 22 years, albeit odd, and unexplained at times, but I've still survived. As the test draws closer though, I'm getting nervous. Can anyone tell me exactly how long it takes for Ambry to run their tests (Their website says exactly 15-35 days)? And, does anyone have any supportive words? I'd greatly appreciate any and all advice or encouragement! Thanks everyone!
 
C

ctalbott0609

New member
I've been keeping something to myself for a while now, and I don't feel that I can hide it any longer. A while back at one of Paige's CF visits, while discussing family history with our CF DR.; He became a little concerned over some things I told him. He decided that I needed to go to MY PCP and discuss with her the reality that I might have CF, and the need to be tested.

Well, I had a follow-up visit for my pregnancy with her on Wednesday, and as it turns out, after researching CF a bit...she's in agreement. Her nurse spent most of the day on the phone arguing with our insurance company, but finally, they decided to cover the testing. SO, tomorrow, I will be going to get blood drawn for a full panel Ambry test.

Other then my husband, and my mom, I've refrained from telling my friends and the rest of my family. The focus needs to be on Paige right now. I've survived 22 years, albeit odd, and unexplained at times, but I've still survived. As the test draws closer though, I'm getting nervous. Can anyone tell me exactly how long it takes for Ambry to run their tests (Their website says exactly 15-35 days)? And, does anyone have any supportive words? I'd greatly appreciate any and all advice or encouragement! Thanks everyone!
 
C

ctalbott0609

New member
I've been keeping something to myself for a while now, and I don't feel that I can hide it any longer. A while back at one of Paige's CF visits, while discussing family history with our CF DR.; He became a little concerned over some things I told him. He decided that I needed to go to MY PCP and discuss with her the reality that I might have CF, and the need to be tested.

Well, I had a follow-up visit for my pregnancy with her on Wednesday, and as it turns out, after researching CF a bit...she's in agreement. Her nurse spent most of the day on the phone arguing with our insurance company, but finally, they decided to cover the testing. SO, tomorrow, I will be going to get blood drawn for a full panel Ambry test.

Other then my husband, and my mom, I've refrained from telling my friends and the rest of my family. The focus needs to be on Paige right now. I've survived 22 years, albeit odd, and unexplained at times, but I've still survived. As the test draws closer though, I'm getting nervous. Can anyone tell me exactly how long it takes for Ambry to run their tests (Their website says exactly 15-35 days)? And, does anyone have any supportive words? I'd greatly appreciate any and all advice or encouragement! Thanks everyone!
 
C

ctalbott0609

New member
I've been keeping something to myself for a while now, and I don't feel that I can hide it any longer. A while back at one of Paige's CF visits, while discussing family history with our CF DR.; He became a little concerned over some things I told him. He decided that I needed to go to MY PCP and discuss with her the reality that I might have CF, and the need to be tested.

Well, I had a follow-up visit for my pregnancy with her on Wednesday, and as it turns out, after researching CF a bit...she's in agreement. Her nurse spent most of the day on the phone arguing with our insurance company, but finally, they decided to cover the testing. SO, tomorrow, I will be going to get blood drawn for a full panel Ambry test.

Other then my husband, and my mom, I've refrained from telling my friends and the rest of my family. The focus needs to be on Paige right now. I've survived 22 years, albeit odd, and unexplained at times, but I've still survived. As the test draws closer though, I'm getting nervous. Can anyone tell me exactly how long it takes for Ambry to run their tests (Their website says exactly 15-35 days)? And, does anyone have any supportive words? I'd greatly appreciate any and all advice or encouragement! Thanks everyone!
 
C

ctalbott0609

New member
I've been keeping something to myself for a while now, and I don't feel that I can hide it any longer. A while back at one of Paige's CF visits, while discussing family history with our CF DR.; He became a little concerned over some things I told him. He decided that I needed to go to MY PCP and discuss with her the reality that I might have CF, and the need to be tested.
<br />
<br />Well, I had a follow-up visit for my pregnancy with her on Wednesday, and as it turns out, after researching CF a bit...she's in agreement. Her nurse spent most of the day on the phone arguing with our insurance company, but finally, they decided to cover the testing. SO, tomorrow, I will be going to get blood drawn for a full panel Ambry test.
<br />
<br />Other then my husband, and my mom, I've refrained from telling my friends and the rest of my family. The focus needs to be on Paige right now. I've survived 22 years, albeit odd, and unexplained at times, but I've still survived. As the test draws closer though, I'm getting nervous. Can anyone tell me exactly how long it takes for Ambry to run their tests (Their website says exactly 15-35 days)? And, does anyone have any supportive words? I'd greatly appreciate any and all advice or encouragement! Thanks everyone!
 
M

mom2lillian

New member
The 'basic' testing will take the 2 weeks and if it shows two mutations then you have yours and it's done the full testing takes up to 6 weeks so that's why there is the variance. At whatever point they find yours you will be done. You will have either her DF508 or G542X but the trick is finding the other one.

I was diagnosed at 21 years old and the good news is if its true your health will improve plus you will be able to relate to your daughter more.
 
M

mom2lillian

New member
The 'basic' testing will take the 2 weeks and if it shows two mutations then you have yours and it's done the full testing takes up to 6 weeks so that's why there is the variance. At whatever point they find yours you will be done. You will have either her DF508 or G542X but the trick is finding the other one.

I was diagnosed at 21 years old and the good news is if its true your health will improve plus you will be able to relate to your daughter more.
 
M

mom2lillian

New member
The 'basic' testing will take the 2 weeks and if it shows two mutations then you have yours and it's done the full testing takes up to 6 weeks so that's why there is the variance. At whatever point they find yours you will be done. You will have either her DF508 or G542X but the trick is finding the other one.

I was diagnosed at 21 years old and the good news is if its true your health will improve plus you will be able to relate to your daughter more.
 
M

mom2lillian

New member
The 'basic' testing will take the 2 weeks and if it shows two mutations then you have yours and it's done the full testing takes up to 6 weeks so that's why there is the variance. At whatever point they find yours you will be done. You will have either her DF508 or G542X but the trick is finding the other one.

I was diagnosed at 21 years old and the good news is if its true your health will improve plus you will be able to relate to your daughter more.
 
M

mom2lillian

New member
The 'basic' testing will take the 2 weeks and if it shows two mutations then you have yours and it's done the full testing takes up to 6 weeks so that's why there is the variance. At whatever point they find yours you will be done. You will have either her DF508 or G542X but the trick is finding the other one.
<br />
<br />I was diagnosed at 21 years old and the good news is if its true your health will improve plus you will be able to relate to your daughter more.
 
J

JazzysMom

New member
OH Sweety!

One thing I do want to throw in tho I dont want to take away from the real possibilities of CF is.....


Depending on the "symptoms" you could be a carrier that shows symptoms. We have many people say that they have certain symptoms, but have only been tagged as a carrier.

Now things still need to be researched more in that area, but the thought that soooooo many people are walking around with 1 known gene (hence carrier status) & another unknown gene (hence a pending CFer status) scares me in many ways.

So I just thought I would throw this out there in case your testing comes back with nothing more then carrier.....

HUGS
 
J

JazzysMom

New member
OH Sweety!

One thing I do want to throw in tho I dont want to take away from the real possibilities of CF is.....


Depending on the "symptoms" you could be a carrier that shows symptoms. We have many people say that they have certain symptoms, but have only been tagged as a carrier.

Now things still need to be researched more in that area, but the thought that soooooo many people are walking around with 1 known gene (hence carrier status) & another unknown gene (hence a pending CFer status) scares me in many ways.

So I just thought I would throw this out there in case your testing comes back with nothing more then carrier.....

HUGS
 
J

JazzysMom

New member
OH Sweety!

One thing I do want to throw in tho I dont want to take away from the real possibilities of CF is.....


Depending on the "symptoms" you could be a carrier that shows symptoms. We have many people say that they have certain symptoms, but have only been tagged as a carrier.

Now things still need to be researched more in that area, but the thought that soooooo many people are walking around with 1 known gene (hence carrier status) & another unknown gene (hence a pending CFer status) scares me in many ways.

So I just thought I would throw this out there in case your testing comes back with nothing more then carrier.....

HUGS
 
J

JazzysMom

New member
OH Sweety!

One thing I do want to throw in tho I dont want to take away from the real possibilities of CF is.....


Depending on the "symptoms" you could be a carrier that shows symptoms. We have many people say that they have certain symptoms, but have only been tagged as a carrier.

Now things still need to be researched more in that area, but the thought that soooooo many people are walking around with 1 known gene (hence carrier status) & another unknown gene (hence a pending CFer status) scares me in many ways.

So I just thought I would throw this out there in case your testing comes back with nothing more then carrier.....

HUGS
 
J

JazzysMom

New member
OH Sweety!
<br />
<br />One thing I do want to throw in tho I dont want to take away from the real possibilities of CF is.....
<br />
<br />
<br />Depending on the "symptoms" you could be a carrier that shows symptoms. We have many people say that they have certain symptoms, but have only been tagged as a carrier.
<br />
<br />Now things still need to be researched more in that area, but the thought that soooooo many people are walking around with 1 known gene (hence carrier status) & another unknown gene (hence a pending CFer status) scares me in many ways.
<br />
<br />So I just thought I would throw this out there in case your testing comes back with nothing more then carrier.....
<br />
<br />HUGS
 
C

ctalbott0609

New member
Thanks Nicole! That's helps to know that they will at least be sure to look for those two! Mel, Thanks sooooo much for the information!! It'll be nice to know that I'm not crazy if I come back as just a carrier. I'm super nervous though, and I kinda feel guilty for not saying anything before, but it seems like the more I talk about it, the more real it gets for me. My Dr's trying to ease both mine and her concerns by treating a few things as though they are just a coincidence. So I'm keeping my fingers crossed that it is. My main concern is the repercussions it will have where my kids are concerned when it decides to rear it's head, IF I do have it <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
C

ctalbott0609

New member
Thanks Nicole! That's helps to know that they will at least be sure to look for those two! Mel, Thanks sooooo much for the information!! It'll be nice to know that I'm not crazy if I come back as just a carrier. I'm super nervous though, and I kinda feel guilty for not saying anything before, but it seems like the more I talk about it, the more real it gets for me. My Dr's trying to ease both mine and her concerns by treating a few things as though they are just a coincidence. So I'm keeping my fingers crossed that it is. My main concern is the repercussions it will have where my kids are concerned when it decides to rear it's head, IF I do have it <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
C

ctalbott0609

New member
Thanks Nicole! That's helps to know that they will at least be sure to look for those two! Mel, Thanks sooooo much for the information!! It'll be nice to know that I'm not crazy if I come back as just a carrier. I'm super nervous though, and I kinda feel guilty for not saying anything before, but it seems like the more I talk about it, the more real it gets for me. My Dr's trying to ease both mine and her concerns by treating a few things as though they are just a coincidence. So I'm keeping my fingers crossed that it is. My main concern is the repercussions it will have where my kids are concerned when it decides to rear it's head, IF I do have it <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
C

ctalbott0609

New member
Thanks Nicole! That's helps to know that they will at least be sure to look for those two! Mel, Thanks sooooo much for the information!! It'll be nice to know that I'm not crazy if I come back as just a carrier. I'm super nervous though, and I kinda feel guilty for not saying anything before, but it seems like the more I talk about it, the more real it gets for me. My Dr's trying to ease both mine and her concerns by treating a few things as though they are just a coincidence. So I'm keeping my fingers crossed that it is. My main concern is the repercussions it will have where my kids are concerned when it decides to rear it's head, IF I do have it <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
C

ctalbott0609

New member
Thanks Nicole! That's helps to know that they will at least be sure to look for those two! Mel, Thanks sooooo much for the information!! It'll be nice to know that I'm not crazy if I come back as just a carrier. I'm super nervous though, and I kinda feel guilty for not saying anything before, but it seems like the more I talk about it, the more real it gets for me. My Dr's trying to ease both mine and her concerns by treating a few things as though they are just a coincidence. So I'm keeping my fingers crossed that it is. My main concern is the repercussions it will have where my kids are concerned when it decides to rear it's head, IF I do have it <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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