Newbie carrier

kr14v · Oct 6, 2008

Hi everyone, just wanted to express my appreciation for this site and all of the people who post.

DH and I have been married since 2004 and though it was time to start trying for a family. I have had various suspicious issues through my life and was diagnosed by a reproductive endocrinologist with PCOS a handful of weeks ago. She also advised a test for CF; I probably wouldn't have done it, but it happened to be covered by my insurance and they were already taking a gabillion vials of blood anyhow - what's one more?

I was diagnosed as a carrier about two weeks ago, and we were both shocked. Nobody in my family has CF, so we had no idea. I sent DH in the very next day to be tested - again, nobody in his family has CF, so it was just for reassurance that he was "normal" and everything was fine. Turns out he is a carrier too. We were devastated and scared (well, we are still pretty nervous, but we're doing much better now than we were on Thursday, that's for sure!).

After a few days and reading a handful of posts, I am so encouraged by your stories and words. It seems that our options would be to do IVF and test embryos at 8 cells, or do amnio at 11 weeks and make a decision whether to continue if dx came up positive. I think we are both at the point where we would keep the baby regardless of the dx if we were already 11 weeks along as we are both pro-life in an idealistic sense. Are there any other options to detecting CF?

I'm curious what people on the forum could say about our lab tests too. I think we both carry the Delta F508. Is that good, bad, indifferent? I imagine all of this stuff has a variety of outcomes anyhow. Just curious. When I spoke to the woman in the Genetics Lab, I didn't think to ask. Well, frankly, I didn't know to ask! I'm learning a lot on the fly here...

I had already been taking Provera to kickstart a period - the plan was to do that and then continue with Clomid and hope for the best. My thought is to trust God and see what happens, rather than delay. Just trying to collect as much information as possible.

Again, thank you for your wonderful encouragement. It really has made a lot of difference as our carrier status made us question a lot of things! What a whirlwind. Thanks in advance for sharing.

kr14v · Oct 6, 2008

Hi everyone, just wanted to express my appreciation for this site and all of the people who post.

DH and I have been married since 2004 and though it was time to start trying for a family. I have had various suspicious issues through my life and was diagnosed by a reproductive endocrinologist with PCOS a handful of weeks ago. She also advised a test for CF; I probably wouldn't have done it, but it happened to be covered by my insurance and they were already taking a gabillion vials of blood anyhow - what's one more?

I was diagnosed as a carrier about two weeks ago, and we were both shocked. Nobody in my family has CF, so we had no idea. I sent DH in the very next day to be tested - again, nobody in his family has CF, so it was just for reassurance that he was "normal" and everything was fine. Turns out he is a carrier too. We were devastated and scared (well, we are still pretty nervous, but we're doing much better now than we were on Thursday, that's for sure!).

After a few days and reading a handful of posts, I am so encouraged by your stories and words. It seems that our options would be to do IVF and test embryos at 8 cells, or do amnio at 11 weeks and make a decision whether to continue if dx came up positive. I think we are both at the point where we would keep the baby regardless of the dx if we were already 11 weeks along as we are both pro-life in an idealistic sense. Are there any other options to detecting CF?

I'm curious what people on the forum could say about our lab tests too. I think we both carry the Delta F508. Is that good, bad, indifferent? I imagine all of this stuff has a variety of outcomes anyhow. Just curious. When I spoke to the woman in the Genetics Lab, I didn't think to ask. Well, frankly, I didn't know to ask! I'm learning a lot on the fly here...

I had already been taking Provera to kickstart a period - the plan was to do that and then continue with Clomid and hope for the best. My thought is to trust God and see what happens, rather than delay. Just trying to collect as much information as possible.

Again, thank you for your wonderful encouragement. It really has made a lot of difference as our carrier status made us question a lot of things! What a whirlwind. Thanks in advance for sharing.

kr14v · Oct 6, 2008

Hi everyone, just wanted to express my appreciation for this site and all of the people who post.

DH and I have been married since 2004 and though it was time to start trying for a family. I have had various suspicious issues through my life and was diagnosed by a reproductive endocrinologist with PCOS a handful of weeks ago. She also advised a test for CF; I probably wouldn't have done it, but it happened to be covered by my insurance and they were already taking a gabillion vials of blood anyhow - what's one more?

I was diagnosed as a carrier about two weeks ago, and we were both shocked. Nobody in my family has CF, so we had no idea. I sent DH in the very next day to be tested - again, nobody in his family has CF, so it was just for reassurance that he was "normal" and everything was fine. Turns out he is a carrier too. We were devastated and scared (well, we are still pretty nervous, but we're doing much better now than we were on Thursday, that's for sure!).

After a few days and reading a handful of posts, I am so encouraged by your stories and words. It seems that our options would be to do IVF and test embryos at 8 cells, or do amnio at 11 weeks and make a decision whether to continue if dx came up positive. I think we are both at the point where we would keep the baby regardless of the dx if we were already 11 weeks along as we are both pro-life in an idealistic sense. Are there any other options to detecting CF?

I'm curious what people on the forum could say about our lab tests too. I think we both carry the Delta F508. Is that good, bad, indifferent? I imagine all of this stuff has a variety of outcomes anyhow. Just curious. When I spoke to the woman in the Genetics Lab, I didn't think to ask. Well, frankly, I didn't know to ask! I'm learning a lot on the fly here...

I had already been taking Provera to kickstart a period - the plan was to do that and then continue with Clomid and hope for the best. My thought is to trust God and see what happens, rather than delay. Just trying to collect as much information as possible.

Again, thank you for your wonderful encouragement. It really has made a lot of difference as our carrier status made us question a lot of things! What a whirlwind. Thanks in advance for sharing.

kr14v · Oct 6, 2008

Hi everyone, just wanted to express my appreciation for this site and all of the people who post.

DH and I have been married since 2004 and though it was time to start trying for a family. I have had various suspicious issues through my life and was diagnosed by a reproductive endocrinologist with PCOS a handful of weeks ago. She also advised a test for CF; I probably wouldn't have done it, but it happened to be covered by my insurance and they were already taking a gabillion vials of blood anyhow - what's one more?

I was diagnosed as a carrier about two weeks ago, and we were both shocked. Nobody in my family has CF, so we had no idea. I sent DH in the very next day to be tested - again, nobody in his family has CF, so it was just for reassurance that he was "normal" and everything was fine. Turns out he is a carrier too. We were devastated and scared (well, we are still pretty nervous, but we're doing much better now than we were on Thursday, that's for sure!).

After a few days and reading a handful of posts, I am so encouraged by your stories and words. It seems that our options would be to do IVF and test embryos at 8 cells, or do amnio at 11 weeks and make a decision whether to continue if dx came up positive. I think we are both at the point where we would keep the baby regardless of the dx if we were already 11 weeks along as we are both pro-life in an idealistic sense. Are there any other options to detecting CF?

I'm curious what people on the forum could say about our lab tests too. I think we both carry the Delta F508. Is that good, bad, indifferent? I imagine all of this stuff has a variety of outcomes anyhow. Just curious. When I spoke to the woman in the Genetics Lab, I didn't think to ask. Well, frankly, I didn't know to ask! I'm learning a lot on the fly here...

I had already been taking Provera to kickstart a period - the plan was to do that and then continue with Clomid and hope for the best. My thought is to trust God and see what happens, rather than delay. Just trying to collect as much information as possible.

Again, thank you for your wonderful encouragement. It really has made a lot of difference as our carrier status made us question a lot of things! What a whirlwind. Thanks in advance for sharing.

kr14v · Oct 6, 2008

Hi everyone, just wanted to express my appreciation for this site and all of the people who post.
 
 DH and I have been married since 2004 and though it was time to start trying for a family. I have had various suspicious issues through my life and was diagnosed by a reproductive endocrinologist with PCOS a handful of weeks ago. She also advised a test for CF; I probably wouldn't have done it, but it happened to be covered by my insurance and they were already taking a gabillion vials of blood anyhow - what's one more?
 
 I was diagnosed as a carrier about two weeks ago, and we were both shocked. Nobody in my family has CF, so we had no idea. I sent DH in the very next day to be tested - again, nobody in his family has CF, so it was just for reassurance that he was "normal" and everything was fine. Turns out he is a carrier too. We were devastated and scared (well, we are still pretty nervous, but we're doing much better now than we were on Thursday, that's for sure!).
 
 After a few days and reading a handful of posts, I am so encouraged by your stories and words. It seems that our options would be to do IVF and test embryos at 8 cells, or do amnio at 11 weeks and make a decision whether to continue if dx came up positive. I think we are both at the point where we would keep the baby regardless of the dx if we were already 11 weeks along as we are both pro-life in an idealistic sense. Are there any other options to detecting CF?
 
 I'm curious what people on the forum could say about our lab tests too. I think we both carry the Delta F508. Is that good, bad, indifferent? I imagine all of this stuff has a variety of outcomes anyhow. Just curious. When I spoke to the woman in the Genetics Lab, I didn't think to ask. Well, frankly, I didn't know to ask! I'm learning a lot on the fly here...
 
 I had already been taking Provera to kickstart a period - the plan was to do that and then continue with Clomid and hope for the best. My thought is to trust God and see what happens, rather than delay. Just trying to collect as much information as possible.
 
 Again, thank you for your wonderful encouragement. It really has made a lot of difference as our carrier status made us question a lot of things! What a whirlwind. Thanks in advance for sharing.

JazzysMom · Oct 6, 2008

I dont know what other CF testing is available prior to birth.....

I do know about the mutation DF508 tho. It is the most common of the mutations. Some say (or use to say) it is the most severe, but that isnt necessarily true. Unlike some other mutations DF508 has characteristics involving the pancrease AND respiratory from early on especially if you have two copies of it.

IMHO its good to have it because IF/WHEN they come up with something to assist this gene, it would cover a large amount of people. At the same time the advanced made to date arent targeting this mutation....

I have this gene & wasnt diagnosed until I was 7. My respiratory wasnt involved until AFTER my diagnosis. What led to my diagnosis was completely digestive!

Like SOOO much with CF a lot is dependant on compliance, overall care, environment, attitude & just pure luck. That is why siblings with the same mutations & care can have different clinical outcomes.

HUGS to you!

JazzysMom · Oct 6, 2008

I dont know what other CF testing is available prior to birth.....

I do know about the mutation DF508 tho. It is the most common of the mutations. Some say (or use to say) it is the most severe, but that isnt necessarily true. Unlike some other mutations DF508 has characteristics involving the pancrease AND respiratory from early on especially if you have two copies of it.

IMHO its good to have it because IF/WHEN they come up with something to assist this gene, it would cover a large amount of people. At the same time the advanced made to date arent targeting this mutation....

I have this gene & wasnt diagnosed until I was 7. My respiratory wasnt involved until AFTER my diagnosis. What led to my diagnosis was completely digestive!

Like SOOO much with CF a lot is dependant on compliance, overall care, environment, attitude & just pure luck. That is why siblings with the same mutations & care can have different clinical outcomes.

HUGS to you!

JazzysMom · Oct 6, 2008

I dont know what other CF testing is available prior to birth.....

I do know about the mutation DF508 tho. It is the most common of the mutations. Some say (or use to say) it is the most severe, but that isnt necessarily true. Unlike some other mutations DF508 has characteristics involving the pancrease AND respiratory from early on especially if you have two copies of it.

IMHO its good to have it because IF/WHEN they come up with something to assist this gene, it would cover a large amount of people. At the same time the advanced made to date arent targeting this mutation....

I have this gene & wasnt diagnosed until I was 7. My respiratory wasnt involved until AFTER my diagnosis. What led to my diagnosis was completely digestive!

Like SOOO much with CF a lot is dependant on compliance, overall care, environment, attitude & just pure luck. That is why siblings with the same mutations & care can have different clinical outcomes.

HUGS to you!

JazzysMom · Oct 6, 2008

I dont know what other CF testing is available prior to birth.....

I do know about the mutation DF508 tho. It is the most common of the mutations. Some say (or use to say) it is the most severe, but that isnt necessarily true. Unlike some other mutations DF508 has characteristics involving the pancrease AND respiratory from early on especially if you have two copies of it.

IMHO its good to have it because IF/WHEN they come up with something to assist this gene, it would cover a large amount of people. At the same time the advanced made to date arent targeting this mutation....

I have this gene & wasnt diagnosed until I was 7. My respiratory wasnt involved until AFTER my diagnosis. What led to my diagnosis was completely digestive!

Like SOOO much with CF a lot is dependant on compliance, overall care, environment, attitude & just pure luck. That is why siblings with the same mutations & care can have different clinical outcomes.

HUGS to you!

JazzysMom · Oct 6, 2008

I dont know what other CF testing is available prior to birth.....
 
 I do know about the mutation DF508 tho. It is the most common of the mutations. Some say (or use to say) it is the most severe, but that isnt necessarily true. Unlike some other mutations DF508 has characteristics involving the pancrease AND respiratory from early on especially if you have two copies of it.
 
 IMHO its good to have it because IF/WHEN they come up with something to assist this gene, it would cover a large amount of people. At the same time the advanced made to date arent targeting this mutation....
 
 I have this gene & wasnt diagnosed until I was 7. My respiratory wasnt involved until AFTER my diagnosis. What led to my diagnosis was completely digestive!
 
 Like SOOO much with CF a lot is dependant on compliance, overall care, environment, attitude & just pure luck. That is why siblings with the same mutations & care can have different clinical outcomes.
 
 HUGS to you!

just1more · Oct 6, 2008

As Jazzysmom stated, DF508 is the most common or 'classic' CF defect.

As for testing for the baby you had ID the only ones I'm aware of.

Just in case you were not sure, if you are both carriers then any baby would have:

25% chance of No defects
25% chance of CF
50% chance being a carrier

just1more · Oct 6, 2008

As Jazzysmom stated, DF508 is the most common or 'classic' CF defect.

As for testing for the baby you had ID the only ones I'm aware of.

Just in case you were not sure, if you are both carriers then any baby would have:

25% chance of No defects
25% chance of CF
50% chance being a carrier

just1more · Oct 6, 2008

As Jazzysmom stated, DF508 is the most common or 'classic' CF defect.

As for testing for the baby you had ID the only ones I'm aware of.

Just in case you were not sure, if you are both carriers then any baby would have:

25% chance of No defects
25% chance of CF
50% chance being a carrier

just1more · Oct 6, 2008

As Jazzysmom stated, DF508 is the most common or 'classic' CF defect.

As for testing for the baby you had ID the only ones I'm aware of.

Just in case you were not sure, if you are both carriers then any baby would have:

25% chance of No defects
25% chance of CF
50% chance being a carrier

just1more · Oct 6, 2008

As Jazzysmom stated, DF508 is the most common or 'classic' CF defect.
 
 As for testing for the baby you had ID the only ones I'm aware of.
 
 Just in case you were not sure, if you are both carriers then any baby would have:
 
 25% chance of No defects
 25% chance of CF
 50% chance being a carrier

Mommafirst · Oct 6, 2008

Sounds like you are getting yourself quite informed here. Good for you. I understand how shocking it is to find out you are a carrier. I didn't even know what CF was and then to discover I carried this horrid gene. UGH.

I wish you luck in making all your decisions and in the process of conception. I really hope you won't need to make this board your home.

FWIW, if you are going to have any baby you conceive regardless of CF status, you might want to wait until later in the pregnancy for diagnosis. Amnios or CVS as early as 11 weeks has a higher likelihood of miscarry, I believe. I'm a firm believer that you should know at some point in utero so that you can have all the ducks in a row when baby is born, but I doubt you are wanting to go through all this to conceive and then risk a miscarry.

Best of luck!!!

Mommafirst · Oct 6, 2008

Sounds like you are getting yourself quite informed here. Good for you. I understand how shocking it is to find out you are a carrier. I didn't even know what CF was and then to discover I carried this horrid gene. UGH.

I wish you luck in making all your decisions and in the process of conception. I really hope you won't need to make this board your home.

FWIW, if you are going to have any baby you conceive regardless of CF status, you might want to wait until later in the pregnancy for diagnosis. Amnios or CVS as early as 11 weeks has a higher likelihood of miscarry, I believe. I'm a firm believer that you should know at some point in utero so that you can have all the ducks in a row when baby is born, but I doubt you are wanting to go through all this to conceive and then risk a miscarry.

Best of luck!!!

Mommafirst · Oct 6, 2008

Sounds like you are getting yourself quite informed here. Good for you. I understand how shocking it is to find out you are a carrier. I didn't even know what CF was and then to discover I carried this horrid gene. UGH.

I wish you luck in making all your decisions and in the process of conception. I really hope you won't need to make this board your home.

FWIW, if you are going to have any baby you conceive regardless of CF status, you might want to wait until later in the pregnancy for diagnosis. Amnios or CVS as early as 11 weeks has a higher likelihood of miscarry, I believe. I'm a firm believer that you should know at some point in utero so that you can have all the ducks in a row when baby is born, but I doubt you are wanting to go through all this to conceive and then risk a miscarry.

Best of luck!!!

Mommafirst · Oct 6, 2008

Sounds like you are getting yourself quite informed here. Good for you. I understand how shocking it is to find out you are a carrier. I didn't even know what CF was and then to discover I carried this horrid gene. UGH.

I wish you luck in making all your decisions and in the process of conception. I really hope you won't need to make this board your home.

FWIW, if you are going to have any baby you conceive regardless of CF status, you might want to wait until later in the pregnancy for diagnosis. Amnios or CVS as early as 11 weeks has a higher likelihood of miscarry, I believe. I'm a firm believer that you should know at some point in utero so that you can have all the ducks in a row when baby is born, but I doubt you are wanting to go through all this to conceive and then risk a miscarry.

Best of luck!!!

Mommafirst · Oct 6, 2008

Sounds like you are getting yourself quite informed here. Good for you. I understand how shocking it is to find out you are a carrier. I didn't even know what CF was and then to discover I carried this horrid gene. UGH.
 
 I wish you luck in making all your decisions and in the process of conception. I really hope you won't need to make this board your home.
 
 FWIW, if you are going to have any baby you conceive regardless of CF status, you might want to wait until later in the pregnancy for diagnosis. Amnios or CVS as early as 11 weeks has a higher likelihood of miscarry, I believe. I'm a firm believer that you should know at some point in utero so that you can have all the ducks in a row when baby is born, but I doubt you are wanting to go through all this to conceive and then risk a miscarry.
 
 Best of luck!!!

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