Vitamin IV's?

[tara]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

According to the Cystic Fibrosis Foundation 2005 Patient Registry Report, 196 total pregnancies were recorded. However, fewer than 5 live births are recorded. That's not exactly a good track record of CFers and pregnancy.</end quote></div>

I find this statistic oddly disturbing and discouraging to women with CF that want to have babies. I've seen it before and I scratch my head everytime I see it. I've met a lot of CF mommies online since 2002, when I decided I wanted to get pregnant. Maybe none of them go to accredited centers, I don't know. I know there are not many CF mommies out there, compared to non-CFers our age, but 5 live births in 2005? (lots of questions surround the statistic, like did they count the number of live births from pregnancies that actually began in 2004?) The live birth rate seems disturbingly and surprisingly low considering the number of CF mommies I know.

I was the only patient in my clinic to have a live birth (or two <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) in 2004. I attend a fairly small clinic, just over 100 patients total. BUT it's my understanding I was also the only patient in 2004 to get pregnant at my clinic. If fact I'm the only patient at my clinic to EVER get pregnant under their care. And it was twins to boot! The CFF number from 2005 just seems wrong to me. There's got to be more to that story than just those raw numbers with those vague parameters. I would love to see the whole report someday. That's the only way I'll believe it. And I'm a mathematician by trade, numbers are my thing! lol I just don't believe it.

 

[tara]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

According to the Cystic Fibrosis Foundation 2005 Patient Registry Report, 196 total pregnancies were recorded. However, fewer than 5 live births are recorded. That's not exactly a good track record of CFers and pregnancy.</end quote></div>

I find this statistic oddly disturbing and discouraging to women with CF that want to have babies. I've seen it before and I scratch my head everytime I see it. I've met a lot of CF mommies online since 2002, when I decided I wanted to get pregnant. Maybe none of them go to accredited centers, I don't know. I know there are not many CF mommies out there, compared to non-CFers our age, but 5 live births in 2005? (lots of questions surround the statistic, like did they count the number of live births from pregnancies that actually began in 2004?) The live birth rate seems disturbingly and surprisingly low considering the number of CF mommies I know.

I was the only patient in my clinic to have a live birth (or two <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) in 2004. I attend a fairly small clinic, just over 100 patients total. BUT it's my understanding I was also the only patient in 2004 to get pregnant at my clinic. If fact I'm the only patient at my clinic to EVER get pregnant under their care. And it was twins to boot! The CFF number from 2005 just seems wrong to me. There's got to be more to that story than just those raw numbers with those vague parameters. I would love to see the whole report someday. That's the only way I'll believe it. And I'm a mathematician by trade, numbers are my thing! lol I just don't believe it.

 

[tara]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

According to the Cystic Fibrosis Foundation 2005 Patient Registry Report, 196 total pregnancies were recorded. However, fewer than 5 live births are recorded. That's not exactly a good track record of CFers and pregnancy.</end quote></div>

I find this statistic oddly disturbing and discouraging to women with CF that want to have babies. I've seen it before and I scratch my head everytime I see it. I've met a lot of CF mommies online since 2002, when I decided I wanted to get pregnant. Maybe none of them go to accredited centers, I don't know. I know there are not many CF mommies out there, compared to non-CFers our age, but 5 live births in 2005? (lots of questions surround the statistic, like did they count the number of live births from pregnancies that actually began in 2004?) The live birth rate seems disturbingly and surprisingly low considering the number of CF mommies I know.

I was the only patient in my clinic to have a live birth (or two <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) in 2004. I attend a fairly small clinic, just over 100 patients total. BUT it's my understanding I was also the only patient in 2004 to get pregnant at my clinic. If fact I'm the only patient at my clinic to EVER get pregnant under their care. And it was twins to boot! The CFF number from 2005 just seems wrong to me. There's got to be more to that story than just those raw numbers with those vague parameters. I would love to see the whole report someday. That's the only way I'll believe it. And I'm a mathematician by trade, numbers are my thing! lol I just don't believe it.

 

[tara]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

According to the Cystic Fibrosis Foundation 2005 Patient Registry Report, 196 total pregnancies were recorded. However, fewer than 5 live births are recorded. That's not exactly a good track record of CFers and pregnancy.</end quote>

I find this statistic oddly disturbing and discouraging to women with CF that want to have babies. I've seen it before and I scratch my head everytime I see it. I've met a lot of CF mommies online since 2002, when I decided I wanted to get pregnant. Maybe none of them go to accredited centers, I don't know. I know there are not many CF mommies out there, compared to non-CFers our age, but 5 live births in 2005? (lots of questions surround the statistic, like did they count the number of live births from pregnancies that actually began in 2004?) The live birth rate seems disturbingly and surprisingly low considering the number of CF mommies I know.

I was the only patient in my clinic to have a live birth (or two <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) in 2004. I attend a fairly small clinic, just over 100 patients total. BUT it's my understanding I was also the only patient in 2004 to get pregnant at my clinic. If fact I'm the only patient at my clinic to EVER get pregnant under their care. And it was twins to boot! The CFF number from 2005 just seems wrong to me. There's got to be more to that story than just those raw numbers with those vague parameters. I would love to see the whole report someday. That's the only way I'll believe it. And I'm a mathematician by trade, numbers are my thing! lol I just don't believe it.

 

[tara]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

According to the Cystic Fibrosis Foundation 2005 Patient Registry Report, 196 total pregnancies were recorded. However, fewer than 5 live births are recorded. That's not exactly a good track record of CFers and pregnancy.</end quote>

I find this statistic oddly disturbing and discouraging to women with CF that want to have babies. I've seen it before and I scratch my head everytime I see it. I've met a lot of CF mommies online since 2002, when I decided I wanted to get pregnant. Maybe none of them go to accredited centers, I don't know. I know there are not many CF mommies out there, compared to non-CFers our age, but 5 live births in 2005? (lots of questions surround the statistic, like did they count the number of live births from pregnancies that actually began in 2004?) The live birth rate seems disturbingly and surprisingly low considering the number of CF mommies I know.

I was the only patient in my clinic to have a live birth (or two <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) in 2004. I attend a fairly small clinic, just over 100 patients total. BUT it's my understanding I was also the only patient in 2004 to get pregnant at my clinic. If fact I'm the only patient at my clinic to EVER get pregnant under their care. And it was twins to boot! The CFF number from 2005 just seems wrong to me. There's got to be more to that story than just those raw numbers with those vague parameters. I would love to see the whole report someday. That's the only way I'll believe it. And I'm a mathematician by trade, numbers are my thing! lol I just don't believe it.

 

[Keepercjr]

Why does it say births per 100 women?? That is wording that confuses me. It does not say total live births. And how do you get 1.9?

What is wrong with my #s? They don't provide the # of women between 13 and 45. If we presume that most women who got pregnant are over 18 then the # of CF women over 18 works. And 1.9 per 100 women gave birth.

There can't just be 2 other CF women who gave birth in 2005.


Lauren - I really don't think that most women w/ CF who plan pregnancies disregard the risks. I spoke with my doctors, a genetic councilor and a perinatologist. They were all in agreement that I was healthy enough to sustain a pregnancy and be a parent. And I don't know anyone w/ CF who had a baby to prove a point. Having a baby is such a personal and private decision that I think its presumptuous to say that "more are like that than not". I find it pretty offensive.

Tara - I go to UCSF and my doc said she's had about 10-15 women in her practice have kids. I used to go to Valley Children's hospital and I wasn't the first there to have a baby either. I live in Fresno and I know there are a few women w/ CF here who have kids.

 

[Keepercjr]

Why does it say births per 100 women?? That is wording that confuses me. It does not say total live births. And how do you get 1.9?

What is wrong with my #s? They don't provide the # of women between 13 and 45. If we presume that most women who got pregnant are over 18 then the # of CF women over 18 works. And 1.9 per 100 women gave birth.

There can't just be 2 other CF women who gave birth in 2005.


Lauren - I really don't think that most women w/ CF who plan pregnancies disregard the risks. I spoke with my doctors, a genetic councilor and a perinatologist. They were all in agreement that I was healthy enough to sustain a pregnancy and be a parent. And I don't know anyone w/ CF who had a baby to prove a point. Having a baby is such a personal and private decision that I think its presumptuous to say that "more are like that than not". I find it pretty offensive.

Tara - I go to UCSF and my doc said she's had about 10-15 women in her practice have kids. I used to go to Valley Children's hospital and I wasn't the first there to have a baby either. I live in Fresno and I know there are a few women w/ CF here who have kids.

 

[Keepercjr]

Why does it say births per 100 women?? That is wording that confuses me. It does not say total live births. And how do you get 1.9?

What is wrong with my #s? They don't provide the # of women between 13 and 45. If we presume that most women who got pregnant are over 18 then the # of CF women over 18 works. And 1.9 per 100 women gave birth.

There can't just be 2 other CF women who gave birth in 2005.


Lauren - I really don't think that most women w/ CF who plan pregnancies disregard the risks. I spoke with my doctors, a genetic councilor and a perinatologist. They were all in agreement that I was healthy enough to sustain a pregnancy and be a parent. And I don't know anyone w/ CF who had a baby to prove a point. Having a baby is such a personal and private decision that I think its presumptuous to say that "more are like that than not". I find it pretty offensive.

Tara - I go to UCSF and my doc said she's had about 10-15 women in her practice have kids. I used to go to Valley Children's hospital and I wasn't the first there to have a baby either. I live in Fresno and I know there are a few women w/ CF here who have kids.

 

[Keepercjr]

Why does it say births per 100 women?? That is wording that confuses me. It does not say total live births. And how do you get 1.9?

What is wrong with my #s? They don't provide the # of women between 13 and 45. If we presume that most women who got pregnant are over 18 then the # of CF women over 18 works. And 1.9 per 100 women gave birth.

There can't just be 2 other CF women who gave birth in 2005.


Lauren - I really don't think that most women w/ CF who plan pregnancies disregard the risks. I spoke with my doctors, a genetic councilor and a perinatologist. They were all in agreement that I was healthy enough to sustain a pregnancy and be a parent. And I don't know anyone w/ CF who had a baby to prove a point. Having a baby is such a personal and private decision that I think its presumptuous to say that "more are like that than not". I find it pretty offensive.

Tara - I go to UCSF and my doc said she's had about 10-15 women in her practice have kids. I used to go to Valley Children's hospital and I wasn't the first there to have a baby either. I live in Fresno and I know there are a few women w/ CF here who have kids.

 

[Keepercjr]

Why does it say births per 100 women?? That is wording that confuses me. It does not say total live births. And how do you get 1.9?

What is wrong with my #s? They don't provide the # of women between 13 and 45. If we presume that most women who got pregnant are over 18 then the # of CF women over 18 works. And 1.9 per 100 women gave birth.

There can't just be 2 other CF women who gave birth in 2005.


Lauren - I really don't think that most women w/ CF who plan pregnancies disregard the risks. I spoke with my doctors, a genetic councilor and a perinatologist. They were all in agreement that I was healthy enough to sustain a pregnancy and be a parent. And I don't know anyone w/ CF who had a baby to prove a point. Having a baby is such a personal and private decision that I think its presumptuous to say that "more are like that than not". I find it pretty offensive.

Tara - I go to UCSF and my doc said she's had about 10-15 women in her practice have kids. I used to go to Valley Children's hospital and I wasn't the first there to have a baby either. I live in Fresno and I know there are a few women w/ CF here who have kids.

 

[Keepercjr]

I found this study from the CF center in Seattle that had 43 pregnancies resulting in 36 live births between 1989 and 2004. Those are much better odds than 5 out of 200 pregnancies. <a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed&cmd=Retrieve&list_uids=16650742">http://www.ncbi.nlm.nih.gov/si...eve&list_uids=16650742</a>

 

[Keepercjr]

I found this study from the CF center in Seattle that had 43 pregnancies resulting in 36 live births between 1989 and 2004. Those are much better odds than 5 out of 200 pregnancies. <a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed&cmd=Retrieve&list_uids=16650742">http://www.ncbi.nlm.nih.gov/si...eve&list_uids=16650742</a>

 

[Keepercjr]

I found this study from the CF center in Seattle that had 43 pregnancies resulting in 36 live births between 1989 and 2004. Those are much better odds than 5 out of 200 pregnancies. <a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed&cmd=Retrieve&list_uids=16650742">http://www.ncbi.nlm.nih.gov/si...eve&list_uids=16650742</a>

 

[Keepercjr]

I found this study from the CF center in Seattle that had 43 pregnancies resulting in 36 live births between 1989 and 2004. Those are much better odds than 5 out of 200 pregnancies. <a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed&cmd=Retrieve&list_uids=16650742">http://www.ncbi.nlm.nih.gov/si...eve&list_uids=16650742</a>

 

[Keepercjr]

I found this study from the CF center in Seattle that had 43 pregnancies resulting in 36 live births between 1989 and 2004. Those are much better odds than 5 out of 200 pregnancies. <a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed&cmd=Retrieve&list_uids=16650742">http://www.ncbi.nlm.nih.gov/si...eve&list_uids=16650742</a>

 

[Irishgal]

Thanks for clearing up the stats. I got a little nervous when I saw the first post about it. I have been reading a lot of posts in the "pregnancy" section, so I knew there were quite a few mothers with CF just on this site alone.
Anyways, since we got off topic, Tara & Caroline, what do you guys think about the vitamin IV's? Did you guys have good vitamin levels pre pregnancy? Dis they drop during your pregnancy? What was your energy level/tolerance before getting pregnant, & how has it changed since having your babies?
You guys are such wonderful role models to me. It seems as if you really stick to your treatments in addition to caring for a family.
I never miss a treatment & plan to manage my time the best way possible so that I can continue my regimen post pregnancy. (If I ever am lucky enough to get pregnant-haven't even started trying yet-just doing all the research now & everything I can to be at my best).
I need to start posting in the "pregnancy" section.......

 

[Irishgal]

Thanks for clearing up the stats. I got a little nervous when I saw the first post about it. I have been reading a lot of posts in the "pregnancy" section, so I knew there were quite a few mothers with CF just on this site alone.
Anyways, since we got off topic, Tara & Caroline, what do you guys think about the vitamin IV's? Did you guys have good vitamin levels pre pregnancy? Dis they drop during your pregnancy? What was your energy level/tolerance before getting pregnant, & how has it changed since having your babies?
You guys are such wonderful role models to me. It seems as if you really stick to your treatments in addition to caring for a family.
I never miss a treatment & plan to manage my time the best way possible so that I can continue my regimen post pregnancy. (If I ever am lucky enough to get pregnant-haven't even started trying yet-just doing all the research now & everything I can to be at my best).
I need to start posting in the "pregnancy" section.......

 

[Irishgal]

Thanks for clearing up the stats. I got a little nervous when I saw the first post about it. I have been reading a lot of posts in the "pregnancy" section, so I knew there were quite a few mothers with CF just on this site alone.
Anyways, since we got off topic, Tara & Caroline, what do you guys think about the vitamin IV's? Did you guys have good vitamin levels pre pregnancy? Dis they drop during your pregnancy? What was your energy level/tolerance before getting pregnant, & how has it changed since having your babies?
You guys are such wonderful role models to me. It seems as if you really stick to your treatments in addition to caring for a family.
I never miss a treatment & plan to manage my time the best way possible so that I can continue my regimen post pregnancy. (If I ever am lucky enough to get pregnant-haven't even started trying yet-just doing all the research now & everything I can to be at my best).
I need to start posting in the "pregnancy" section.......

 

[Irishgal]

Thanks for clearing up the stats. I got a little nervous when I saw the first post about it. I have been reading a lot of posts in the "pregnancy" section, so I knew there were quite a few mothers with CF just on this site alone.
Anyways, since we got off topic, Tara & Caroline, what do you guys think about the vitamin IV's? Did you guys have good vitamin levels pre pregnancy? Dis they drop during your pregnancy? What was your energy level/tolerance before getting pregnant, & how has it changed since having your babies?
You guys are such wonderful role models to me. It seems as if you really stick to your treatments in addition to caring for a family.
I never miss a treatment & plan to manage my time the best way possible so that I can continue my regimen post pregnancy. (If I ever am lucky enough to get pregnant-haven't even started trying yet-just doing all the research now & everything I can to be at my best).
I need to start posting in the "pregnancy" section.......

 

[Irishgal]

Thanks for clearing up the stats. I got a little nervous when I saw the first post about it. I have been reading a lot of posts in the "pregnancy" section, so I knew there were quite a few mothers with CF just on this site alone.
Anyways, since we got off topic, Tara & Caroline, what do you guys think about the vitamin IV's? Did you guys have good vitamin levels pre pregnancy? Dis they drop during your pregnancy? What was your energy level/tolerance before getting pregnant, & how has it changed since having your babies?
You guys are such wonderful role models to me. It seems as if you really stick to your treatments in addition to caring for a family.
I never miss a treatment & plan to manage my time the best way possible so that I can continue my regimen post pregnancy. (If I ever am lucky enough to get pregnant-haven't even started trying yet-just doing all the research now & everything I can to be at my best).
I need to start posting in the "pregnancy" section.......