Beginning the Journey

[hbollotte]

Jennifer- I'm pretty sure the Ambry covers all mutations.

Lauren- We dicused everything with my doctor and I didn't even want Dustin to get tested because abortion was not even an option. Dr. Katz said it was in our best interest because she said if the baby does have CF then there are preventatives and things they can do for the unborn baby. Like what, I have no idea, but I figure she's the one with the MD and all the certifications so she knows what is best. I talked to her about the risk involved with an amnio and she said there is nothing to worry about. The idea of an amnio scares me. CF or not I will love my baby girl no matter what.

I also live in a small town so if the test comes back positive, i'm sure I will start to see a high risk OB in Houston, TX. That's where my CF specialist is, I have a 2 1/2 hour drive to my clinic.

 

[hbollotte]

Jennifer- I'm pretty sure the Ambry covers all mutations.

Lauren- We dicused everything with my doctor and I didn't even want Dustin to get tested because abortion was not even an option. Dr. Katz said it was in our best interest because she said if the baby does have CF then there are preventatives and things they can do for the unborn baby. Like what, I have no idea, but I figure she's the one with the MD and all the certifications so she knows what is best. I talked to her about the risk involved with an amnio and she said there is nothing to worry about. The idea of an amnio scares me. CF or not I will love my baby girl no matter what.

I also live in a small town so if the test comes back positive, i'm sure I will start to see a high risk OB in Houston, TX. That's where my CF specialist is, I have a 2 1/2 hour drive to my clinic.

 

[hbollotte]

Jennifer- I'm pretty sure the Ambry covers all mutations.

Lauren- We dicused everything with my doctor and I didn't even want Dustin to get tested because abortion was not even an option. Dr. Katz said it was in our best interest because she said if the baby does have CF then there are preventatives and things they can do for the unborn baby. Like what, I have no idea, but I figure she's the one with the MD and all the certifications so she knows what is best. I talked to her about the risk involved with an amnio and she said there is nothing to worry about. The idea of an amnio scares me. CF or not I will love my baby girl no matter what.

I also live in a small town so if the test comes back positive, i'm sure I will start to see a high risk OB in Houston, TX. That's where my CF specialist is, I have a 2 1/2 hour drive to my clinic.

 

[hbollotte]

Jennifer- I'm pretty sure the Ambry covers all mutations.

Lauren- We dicused everything with my doctor and I didn't even want Dustin to get tested because abortion was not even an option. Dr. Katz said it was in our best interest because she said if the baby does have CF then there are preventatives and things they can do for the unborn baby. Like what, I have no idea, but I figure she's the one with the MD and all the certifications so she knows what is best. I talked to her about the risk involved with an amnio and she said there is nothing to worry about. The idea of an amnio scares me. CF or not I will love my baby girl no matter what.

I also live in a small town so if the test comes back positive, i'm sure I will start to see a high risk OB in Houston, TX. That's where my CF specialist is, I have a 2 1/2 hour drive to my clinic.

 

[hbollotte]

Jennifer- I'm pretty sure the Ambry covers all mutations.

Lauren- We dicused everything with my doctor and I didn't even want Dustin to get tested because abortion was not even an option. Dr. Katz said it was in our best interest because she said if the baby does have CF then there are preventatives and things they can do for the unborn baby. Like what, I have no idea, but I figure she's the one with the MD and all the certifications so she knows what is best. I talked to her about the risk involved with an amnio and she said there is nothing to worry about. The idea of an amnio scares me. CF or not I will love my baby girl no matter what.

I also live in a small town so if the test comes back positive, i'm sure I will start to see a high risk OB in Houston, TX. That's where my CF specialist is, I have a 2 1/2 hour drive to my clinic.

 

[hbollotte]

Jennifer- I'm pretty sure the Ambry covers all mutations.

Lauren- We dicused everything with my doctor and I didn't even want Dustin to get tested because abortion was not even an option. Dr. Katz said it was in our best interest because she said if the baby does have CF then there are preventatives and things they can do for the unborn baby. Like what, I have no idea, but I figure she's the one with the MD and all the certifications so she knows what is best. I talked to her about the risk involved with an amnio and she said there is nothing to worry about. The idea of an amnio scares me. CF or not I will love my baby girl no matter what.

I also live in a small town so if the test comes back positive, i'm sure I will start to see a high risk OB in Houston, TX. That's where my CF specialist is, I have a 2 1/2 hour drive to my clinic.

 

[mom2lillian]

hbollotte-given the situation (small town and curretnly not followed by high risk doc) I would think an amnio is an excellent idea. I too was petrified of amnios though I didnt need one. Recent studies have shown there is under a~1% chance of miscarriage but they are now showing that this number is very very close to the chance of women having a mc around this same time in their preganncy anyway, I just got a link to the study a few weeks ago but I dont have it anymore. If your child does have CF they will probably want to monitor a # of things more closely.

If anyone needs info on the ambry tests just see my blog.

 

[mom2lillian]

hbollotte-given the situation (small town and curretnly not followed by high risk doc) I would think an amnio is an excellent idea. I too was petrified of amnios though I didnt need one. Recent studies have shown there is under a~1% chance of miscarriage but they are now showing that this number is very very close to the chance of women having a mc around this same time in their preganncy anyway, I just got a link to the study a few weeks ago but I dont have it anymore. If your child does have CF they will probably want to monitor a # of things more closely.

If anyone needs info on the ambry tests just see my blog.

 

[mom2lillian]

hbollotte-given the situation (small town and curretnly not followed by high risk doc) I would think an amnio is an excellent idea. I too was petrified of amnios though I didnt need one. Recent studies have shown there is under a~1% chance of miscarriage but they are now showing that this number is very very close to the chance of women having a mc around this same time in their preganncy anyway, I just got a link to the study a few weeks ago but I dont have it anymore. If your child does have CF they will probably want to monitor a # of things more closely.

If anyone needs info on the ambry tests just see my blog.

 

[mom2lillian]

hbollotte-given the situation (small town and curretnly not followed by high risk doc) I would think an amnio is an excellent idea. I too was petrified of amnios though I didnt need one. Recent studies have shown there is under a~1% chance of miscarriage but they are now showing that this number is very very close to the chance of women having a mc around this same time in their preganncy anyway, I just got a link to the study a few weeks ago but I dont have it anymore. If your child does have CF they will probably want to monitor a # of things more closely.

If anyone needs info on the ambry tests just see my blog.

 

[mom2lillian]

hbollotte-given the situation (small town and curretnly not followed by high risk doc) I would think an amnio is an excellent idea. I too was petrified of amnios though I didnt need one. Recent studies have shown there is under a~1% chance of miscarriage but they are now showing that this number is very very close to the chance of women having a mc around this same time in their preganncy anyway, I just got a link to the study a few weeks ago but I dont have it anymore. If your child does have CF they will probably want to monitor a # of things more closely.

If anyone needs info on the ambry tests just see my blog.

 

[mom2lillian]

hbollotte-given the situation (small town and curretnly not followed by high risk doc) I would think an amnio is an excellent idea. I too was petrified of amnios though I didnt need one. Recent studies have shown there is under a~1% chance of miscarriage but they are now showing that this number is very very close to the chance of women having a mc around this same time in their preganncy anyway, I just got a link to the study a few weeks ago but I dont have it anymore. If your child does have CF they will probably want to monitor a # of things more closely.

If anyone needs info on the ambry tests just see my blog.

 

[JenNorthWest]

This may be a silly question, but what is an amino?

 

[JenNorthWest]

This may be a silly question, but what is an amino?

 

[JenNorthWest]

This may be a silly question, but what is an amino?

 

[JenNorthWest]

This may be a silly question, but what is an amino?

 

[JenNorthWest]

This may be a silly question, but what is an amino?

 

[JenNorthWest]

This may be a silly question, but what is an amino?

 

[tara]

Hi Jennifer,

Aren't you just adorable?! I love your photo signature. With respect to your question about HTS, yes, I use it. I've been using it for a year. Have you tried it yet? I think it's great stuff. A lot of people do their bronchodilator (xopenex or albuterol) and then wait about 15-60 minutes before doing HTS to open the airways. I only way about 0.2 seconds, because I'm impatient and I don't seem to have a problem with bronchospasms from the HTS. I do alternate my therapies with HTS and pulmozyme. So in the AM I do my vest with xopenex and HTS. Then after lunch I do my vest with xop and pulmozyme. Then before bed I do my vest with xop and HTS again. And when I'm on an "on" month for antibiotics I add those at the end of my morning and evening treatments. I don't care for TOBI so I'm using Aztreonam instead. My psuedo seems to be more sensitive to aztreonam.

You have great PFTs! Before I got pregnant I was stable in the mid to upper 50's. Then at the end of my pregnancy I was stable in the upper 60's! A record high for me in recent years. I didn't feel any more short of breath in the beginning of my pregnancy than at the end. Even with over 12 pounds of baby in there (I had twins).

Amnio is a test where they use a long needle to puncture the uterus (through your tummy) and draw out some amniotic fluid (1 or 2 ounces). This is typically done between 16 and 20 weeks (40 weeks is a full term pregnancy). The amniotic fluid is the stuff baby swims in for 9 months. There's all sorts of genetic material in there. You can find out the sex of the baby as well as other genetic (defects) or information.

CVS (chorionic villis sampling) is done early in the pregnancy (between 11 and 12 weeks) During this test the doctor takes tiny samples from the placenta which may be drawn through the cervix or through the abdomen. The placenta contains all sorts of genetic material and you can find out if there are genetic defects as well as the sex of the baby.

My husband had carrier testing done in 2000 before we got married. He was only screened for 26 of the most common mutations. At the time I'm not even sure Ambry was around to do more extensive testing. We didn't even learn about the Ambry test until after our twins were born. If they show signs of CF I'll have them tested, but the odds my husband carries a different gene is near nil (he's from british) so my CF doctors aren't worried about it. Now my twins are nearly 3 years old, and I'm still the first and only woman in my clinic to go through pregnancy. It's a fairly small (growing) clinic in Sacramento with about 110 patients now.

Hope some of this helps. Good luck and welcome to the site, feel free to ask more questions!

Tara

 

[tara]

Hi Jennifer,

Aren't you just adorable?! I love your photo signature. With respect to your question about HTS, yes, I use it. I've been using it for a year. Have you tried it yet? I think it's great stuff. A lot of people do their bronchodilator (xopenex or albuterol) and then wait about 15-60 minutes before doing HTS to open the airways. I only way about 0.2 seconds, because I'm impatient and I don't seem to have a problem with bronchospasms from the HTS. I do alternate my therapies with HTS and pulmozyme. So in the AM I do my vest with xopenex and HTS. Then after lunch I do my vest with xop and pulmozyme. Then before bed I do my vest with xop and HTS again. And when I'm on an "on" month for antibiotics I add those at the end of my morning and evening treatments. I don't care for TOBI so I'm using Aztreonam instead. My psuedo seems to be more sensitive to aztreonam.

You have great PFTs! Before I got pregnant I was stable in the mid to upper 50's. Then at the end of my pregnancy I was stable in the upper 60's! A record high for me in recent years. I didn't feel any more short of breath in the beginning of my pregnancy than at the end. Even with over 12 pounds of baby in there (I had twins).

Amnio is a test where they use a long needle to puncture the uterus (through your tummy) and draw out some amniotic fluid (1 or 2 ounces). This is typically done between 16 and 20 weeks (40 weeks is a full term pregnancy). The amniotic fluid is the stuff baby swims in for 9 months. There's all sorts of genetic material in there. You can find out the sex of the baby as well as other genetic (defects) or information.

CVS (chorionic villis sampling) is done early in the pregnancy (between 11 and 12 weeks) During this test the doctor takes tiny samples from the placenta which may be drawn through the cervix or through the abdomen. The placenta contains all sorts of genetic material and you can find out if there are genetic defects as well as the sex of the baby.

My husband had carrier testing done in 2000 before we got married. He was only screened for 26 of the most common mutations. At the time I'm not even sure Ambry was around to do more extensive testing. We didn't even learn about the Ambry test until after our twins were born. If they show signs of CF I'll have them tested, but the odds my husband carries a different gene is near nil (he's from british) so my CF doctors aren't worried about it. Now my twins are nearly 3 years old, and I'm still the first and only woman in my clinic to go through pregnancy. It's a fairly small (growing) clinic in Sacramento with about 110 patients now.

Hope some of this helps. Good luck and welcome to the site, feel free to ask more questions!

Tara