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Tonights Private Practice episode - CF & B Cepacia
- Thread starter EmilysMomma
- Start date
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
I have CF and so does my daughter
</end quote></div>
i'm always interested when i hear CF patients having CF kids.
was the baby's father not tested for CF carrier status?
sorry if I'm too personal - just curious.</end quote></div>
I totally don't mind the question at all, otherwise I wouldn't be posting on here <img src="">
First off please excuse any spelling/grammar errors, I am going to try to type fast lol
My husband actually didn't have any genetic testing done. I'd been off birth control 3 years and weren't trying or preventing, I had always wanted to have a child but never really thought when the time came that I'd be able to, and I thought that it would be something that I'd really have to plan and try hard at and possibly even get help with,I had planned to have my husband tested but it just happened. we got married , bought a house, and one month later all of a sudden I was pregnant, we hadn't done anything different and like I said I'd been off the pill 3 years.
I feel like it was just meant to be. I felt like it was truly a miracle that I even got pregnant, and so I even opted out of having tests done while I was pregnant to see if she had cf. I never really thought she would have it because I never would have thought my husband was a carrier because his family didn't even know what cf was. I just didn't think he would be that 1 in 20 or 25 person that would be a carrier and then even if he was it was still a 50/50 chance to have a child with cf.
Anyhow my daughter was born 3 weeks early, I had spent the last month in the hospital, pregnancy was hard on my body, I developed diabetes (that I still have now) and they finally induced me at 37 weeks, she was 5 ls 9 oz and very healthy at birth. Actually the doctors had no reason to believe she had cf, no symptoms. they said we should wait until at least 6 months of age to start sweat testing, the only reason we were doing the test was b/c of the possibility not b/c we thought she had it. well to my surprise she had 2 postive sweat tests and then we did the dna testing and after 3 weeks of waiting i got the call that she was positive.
i knew there was the possibility but i still hoped and prayed she could just be healthy, with all that I went through and how hard the pregnancy was ... I was so hopeful b/c the dr didnt think she had it and she didnt seem like she did and i went almost 9 months thinking my body actually created a healthy baby.
it turns out though the copy of the gene she got from my husband makes it so she has it milder than myself,so far she is even pancreatic sufficient, but we have to keep an eye on that , her dr says it could change. actually her dr is my former pulmonologist.
so yea it's definitely really difficult at times to care for her and myself. she does the vest and pulmozyme so far. she's doing really well she has only had a few minor infections from colds but she bounces back really quick and doesnt even always need an antibiotic.
Sometimes i feel really guilty and I hate so much that she has to have this crappy disease too ... but it just makes her even more special to me and is why we have such a stronger connection and I can really relate with her on another level and I know how she feels and know what it feels like .
by the way I am interested too when it comes to cf mother having cf kids, I want to think there was another girl on here but I'm not sure, I just know its not so common.</end quote></div>
Hi Laura, Thank you for sharing your story with us.. I totally understand the close connection you have w/ your daughter. While i myself have CF and dont have a child w/ CF i have found that the connection w/ another CFer can be immediate and strong..
I was a late dx. I remember when i was first dxd i finally felt i belonged somewhere , that ppl understood exactly what i was going through/feeling.. I think beside praying to God this site has been a life saver for me in many ways..
There are several parent/child/children ppl on this site..
Take care & God Bless you, your daughter and husband..
<img src="i/expressions/heart.gif" border="0"> joni
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
I have CF and so does my daughter
</end quote></div>
i'm always interested when i hear CF patients having CF kids.
was the baby's father not tested for CF carrier status?
sorry if I'm too personal - just curious.</end quote></div>
I totally don't mind the question at all, otherwise I wouldn't be posting on here <img src="">
First off please excuse any spelling/grammar errors, I am going to try to type fast lol
My husband actually didn't have any genetic testing done. I'd been off birth control 3 years and weren't trying or preventing, I had always wanted to have a child but never really thought when the time came that I'd be able to, and I thought that it would be something that I'd really have to plan and try hard at and possibly even get help with,I had planned to have my husband tested but it just happened. we got married , bought a house, and one month later all of a sudden I was pregnant, we hadn't done anything different and like I said I'd been off the pill 3 years.
I feel like it was just meant to be. I felt like it was truly a miracle that I even got pregnant, and so I even opted out of having tests done while I was pregnant to see if she had cf. I never really thought she would have it because I never would have thought my husband was a carrier because his family didn't even know what cf was. I just didn't think he would be that 1 in 20 or 25 person that would be a carrier and then even if he was it was still a 50/50 chance to have a child with cf.
Anyhow my daughter was born 3 weeks early, I had spent the last month in the hospital, pregnancy was hard on my body, I developed diabetes (that I still have now) and they finally induced me at 37 weeks, she was 5 ls 9 oz and very healthy at birth. Actually the doctors had no reason to believe she had cf, no symptoms. they said we should wait until at least 6 months of age to start sweat testing, the only reason we were doing the test was b/c of the possibility not b/c we thought she had it. well to my surprise she had 2 postive sweat tests and then we did the dna testing and after 3 weeks of waiting i got the call that she was positive.
i knew there was the possibility but i still hoped and prayed she could just be healthy, with all that I went through and how hard the pregnancy was ... I was so hopeful b/c the dr didnt think she had it and she didnt seem like she did and i went almost 9 months thinking my body actually created a healthy baby.
it turns out though the copy of the gene she got from my husband makes it so she has it milder than myself,so far she is even pancreatic sufficient, but we have to keep an eye on that , her dr says it could change. actually her dr is my former pulmonologist.
so yea it's definitely really difficult at times to care for her and myself. she does the vest and pulmozyme so far. she's doing really well she has only had a few minor infections from colds but she bounces back really quick and doesnt even always need an antibiotic.
Sometimes i feel really guilty and I hate so much that she has to have this crappy disease too ... but it just makes her even more special to me and is why we have such a stronger connection and I can really relate with her on another level and I know how she feels and know what it feels like .
by the way I am interested too when it comes to cf mother having cf kids, I want to think there was another girl on here but I'm not sure, I just know its not so common.</end quote></div>
Hi Laura, Thank you for sharing your story with us.. I totally understand the close connection you have w/ your daughter. While i myself have CF and dont have a child w/ CF i have found that the connection w/ another CFer can be immediate and strong..
I was a late dx. I remember when i was first dxd i finally felt i belonged somewhere , that ppl understood exactly what i was going through/feeling.. I think beside praying to God this site has been a life saver for me in many ways..
There are several parent/child/children ppl on this site..
Take care & God Bless you, your daughter and husband..
<img src="i/expressions/heart.gif" border="0"> joni
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
I have CF and so does my daughter
</end quote></div>
i'm always interested when i hear CF patients having CF kids.
was the baby's father not tested for CF carrier status?
sorry if I'm too personal - just curious.</end quote></div>
I totally don't mind the question at all, otherwise I wouldn't be posting on here <img src="">
First off please excuse any spelling/grammar errors, I am going to try to type fast lol
My husband actually didn't have any genetic testing done. I'd been off birth control 3 years and weren't trying or preventing, I had always wanted to have a child but never really thought when the time came that I'd be able to, and I thought that it would be something that I'd really have to plan and try hard at and possibly even get help with,I had planned to have my husband tested but it just happened. we got married , bought a house, and one month later all of a sudden I was pregnant, we hadn't done anything different and like I said I'd been off the pill 3 years.
I feel like it was just meant to be. I felt like it was truly a miracle that I even got pregnant, and so I even opted out of having tests done while I was pregnant to see if she had cf. I never really thought she would have it because I never would have thought my husband was a carrier because his family didn't even know what cf was. I just didn't think he would be that 1 in 20 or 25 person that would be a carrier and then even if he was it was still a 50/50 chance to have a child with cf.
Anyhow my daughter was born 3 weeks early, I had spent the last month in the hospital, pregnancy was hard on my body, I developed diabetes (that I still have now) and they finally induced me at 37 weeks, she was 5 ls 9 oz and very healthy at birth. Actually the doctors had no reason to believe she had cf, no symptoms. they said we should wait until at least 6 months of age to start sweat testing, the only reason we were doing the test was b/c of the possibility not b/c we thought she had it. well to my surprise she had 2 postive sweat tests and then we did the dna testing and after 3 weeks of waiting i got the call that she was positive.
i knew there was the possibility but i still hoped and prayed she could just be healthy, with all that I went through and how hard the pregnancy was ... I was so hopeful b/c the dr didnt think she had it and she didnt seem like she did and i went almost 9 months thinking my body actually created a healthy baby.
it turns out though the copy of the gene she got from my husband makes it so she has it milder than myself,so far she is even pancreatic sufficient, but we have to keep an eye on that , her dr says it could change. actually her dr is my former pulmonologist.
so yea it's definitely really difficult at times to care for her and myself. she does the vest and pulmozyme so far. she's doing really well she has only had a few minor infections from colds but she bounces back really quick and doesnt even always need an antibiotic.
Sometimes i feel really guilty and I hate so much that she has to have this crappy disease too ... but it just makes her even more special to me and is why we have such a stronger connection and I can really relate with her on another level and I know how she feels and know what it feels like .
by the way I am interested too when it comes to cf mother having cf kids, I want to think there was another girl on here but I'm not sure, I just know its not so common.</end quote></div>
Hi Laura, Thank you for sharing your story with us.. I totally understand the close connection you have w/ your daughter. While i myself have CF and dont have a child w/ CF i have found that the connection w/ another CFer can be immediate and strong..
I was a late dx. I remember when i was first dxd i finally felt i belonged somewhere , that ppl understood exactly what i was going through/feeling.. I think beside praying to God this site has been a life saver for me in many ways..
There are several parent/child/children ppl on this site..
Take care & God Bless you, your daughter and husband..
<img src="i/expressions/heart.gif" border="0"> joni
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
I have CF and so does my daughter
</end quote></div>
i'm always interested when i hear CF patients having CF kids.
was the baby's father not tested for CF carrier status?
sorry if I'm too personal - just curious.</end quote></div>
I totally don't mind the question at all, otherwise I wouldn't be posting on here <img src="">
First off please excuse any spelling/grammar errors, I am going to try to type fast lol
My husband actually didn't have any genetic testing done. I'd been off birth control 3 years and weren't trying or preventing, I had always wanted to have a child but never really thought when the time came that I'd be able to, and I thought that it would be something that I'd really have to plan and try hard at and possibly even get help with,I had planned to have my husband tested but it just happened. we got married , bought a house, and one month later all of a sudden I was pregnant, we hadn't done anything different and like I said I'd been off the pill 3 years.
I feel like it was just meant to be. I felt like it was truly a miracle that I even got pregnant, and so I even opted out of having tests done while I was pregnant to see if she had cf. I never really thought she would have it because I never would have thought my husband was a carrier because his family didn't even know what cf was. I just didn't think he would be that 1 in 20 or 25 person that would be a carrier and then even if he was it was still a 50/50 chance to have a child with cf.
Anyhow my daughter was born 3 weeks early, I had spent the last month in the hospital, pregnancy was hard on my body, I developed diabetes (that I still have now) and they finally induced me at 37 weeks, she was 5 ls 9 oz and very healthy at birth. Actually the doctors had no reason to believe she had cf, no symptoms. they said we should wait until at least 6 months of age to start sweat testing, the only reason we were doing the test was b/c of the possibility not b/c we thought she had it. well to my surprise she had 2 postive sweat tests and then we did the dna testing and after 3 weeks of waiting i got the call that she was positive.
i knew there was the possibility but i still hoped and prayed she could just be healthy, with all that I went through and how hard the pregnancy was ... I was so hopeful b/c the dr didnt think she had it and she didnt seem like she did and i went almost 9 months thinking my body actually created a healthy baby.
it turns out though the copy of the gene she got from my husband makes it so she has it milder than myself,so far she is even pancreatic sufficient, but we have to keep an eye on that , her dr says it could change. actually her dr is my former pulmonologist.
so yea it's definitely really difficult at times to care for her and myself. she does the vest and pulmozyme so far. she's doing really well she has only had a few minor infections from colds but she bounces back really quick and doesnt even always need an antibiotic.
Sometimes i feel really guilty and I hate so much that she has to have this crappy disease too ... but it just makes her even more special to me and is why we have such a stronger connection and I can really relate with her on another level and I know how she feels and know what it feels like .
by the way I am interested too when it comes to cf mother having cf kids, I want to think there was another girl on here but I'm not sure, I just know its not so common.</end quote></div>
Hi Laura, Thank you for sharing your story with us.. I totally understand the close connection you have w/ your daughter. While i myself have CF and dont have a child w/ CF i have found that the connection w/ another CFer can be immediate and strong..
I was a late dx. I remember when i was first dxd i finally felt i belonged somewhere , that ppl understood exactly what i was going through/feeling.. I think beside praying to God this site has been a life saver for me in many ways..
There are several parent/child/children ppl on this site..
Take care & God Bless you, your daughter and husband..
<img src="i/expressions/heart.gif" border="0"> joni
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
I have CF and so does my daughter
</end quote></div>
i'm always interested when i hear CF patients having CF kids.
was the baby's father not tested for CF carrier status?
sorry if I'm too personal - just curious.</end quote></div>
I totally don't mind the question at all, otherwise I wouldn't be posting on here <img src="">
First off please excuse any spelling/grammar errors, I am going to try to type fast lol
My husband actually didn't have any genetic testing done. I'd been off birth control 3 years and weren't trying or preventing, I had always wanted to have a child but never really thought when the time came that I'd be able to, and I thought that it would be something that I'd really have to plan and try hard at and possibly even get help with,I had planned to have my husband tested but it just happened. we got married , bought a house, and one month later all of a sudden I was pregnant, we hadn't done anything different and like I said I'd been off the pill 3 years.
I feel like it was just meant to be. I felt like it was truly a miracle that I even got pregnant, and so I even opted out of having tests done while I was pregnant to see if she had cf. I never really thought she would have it because I never would have thought my husband was a carrier because his family didn't even know what cf was. I just didn't think he would be that 1 in 20 or 25 person that would be a carrier and then even if he was it was still a 50/50 chance to have a child with cf.
Anyhow my daughter was born 3 weeks early, I had spent the last month in the hospital, pregnancy was hard on my body, I developed diabetes (that I still have now) and they finally induced me at 37 weeks, she was 5 ls 9 oz and very healthy at birth. Actually the doctors had no reason to believe she had cf, no symptoms. they said we should wait until at least 6 months of age to start sweat testing, the only reason we were doing the test was b/c of the possibility not b/c we thought she had it. well to my surprise she had 2 postive sweat tests and then we did the dna testing and after 3 weeks of waiting i got the call that she was positive.
i knew there was the possibility but i still hoped and prayed she could just be healthy, with all that I went through and how hard the pregnancy was ... I was so hopeful b/c the dr didnt think she had it and she didnt seem like she did and i went almost 9 months thinking my body actually created a healthy baby.
it turns out though the copy of the gene she got from my husband makes it so she has it milder than myself,so far she is even pancreatic sufficient, but we have to keep an eye on that , her dr says it could change. actually her dr is my former pulmonologist.
so yea it's definitely really difficult at times to care for her and myself. she does the vest and pulmozyme so far. she's doing really well she has only had a few minor infections from colds but she bounces back really quick and doesnt even always need an antibiotic.
Sometimes i feel really guilty and I hate so much that she has to have this crappy disease too ... but it just makes her even more special to me and is why we have such a stronger connection and I can really relate with her on another level and I know how she feels and know what it feels like .
by the way I am interested too when it comes to cf mother having cf kids, I want to think there was another girl on here but I'm not sure, I just know its not so common.</end quote></div>
Hi Laura, Thank you for sharing your story with us.. I totally understand the close connection you have w/ your daughter. While i myself have CF and dont have a child w/ CF i have found that the connection w/ another CFer can be immediate and strong..
I was a late dx. I remember when i was first dxd i finally felt i belonged somewhere , that ppl understood exactly what i was going through/feeling.. I think beside praying to God this site has been a life saver for me in many ways..
There are several parent/child/children ppl on this site..
Take care & God Bless you, your daughter and husband..
<img src="i/expressions/heart.gif" border="0"> joni
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
I have CF and so does my daughter
</end quote></div>
i'm always interested when i hear CF patients having CF kids.
was the baby's father not tested for CF carrier status?
sorry if I'm too personal - just curious.</end quote></div>
I totally don't mind the question at all, otherwise I wouldn't be posting on here <img src="">
First off please excuse any spelling/grammar errors, I am going to try to type fast lol
My husband actually didn't have any genetic testing done. I'd been off birth control 3 years and weren't trying or preventing, I had always wanted to have a child but never really thought when the time came that I'd be able to, and I thought that it would be something that I'd really have to plan and try hard at and possibly even get help with,I had planned to have my husband tested but it just happened. we got married , bought a house, and one month later all of a sudden I was pregnant, we hadn't done anything different and like I said I'd been off the pill 3 years.
I feel like it was just meant to be. I felt like it was truly a miracle that I even got pregnant, and so I even opted out of having tests done while I was pregnant to see if she had cf. I never really thought she would have it because I never would have thought my husband was a carrier because his family didn't even know what cf was. I just didn't think he would be that 1 in 20 or 25 person that would be a carrier and then even if he was it was still a 50/50 chance to have a child with cf.
Anyhow my daughter was born 3 weeks early, I had spent the last month in the hospital, pregnancy was hard on my body, I developed diabetes (that I still have now) and they finally induced me at 37 weeks, she was 5 ls 9 oz and very healthy at birth. Actually the doctors had no reason to believe she had cf, no symptoms. they said we should wait until at least 6 months of age to start sweat testing, the only reason we were doing the test was b/c of the possibility not b/c we thought she had it. well to my surprise she had 2 postive sweat tests and then we did the dna testing and after 3 weeks of waiting i got the call that she was positive.
i knew there was the possibility but i still hoped and prayed she could just be healthy, with all that I went through and how hard the pregnancy was ... I was so hopeful b/c the dr didnt think she had it and she didnt seem like she did and i went almost 9 months thinking my body actually created a healthy baby.
it turns out though the copy of the gene she got from my husband makes it so she has it milder than myself,so far she is even pancreatic sufficient, but we have to keep an eye on that , her dr says it could change. actually her dr is my former pulmonologist.
so yea it's definitely really difficult at times to care for her and myself. she does the vest and pulmozyme so far. she's doing really well she has only had a few minor infections from colds but she bounces back really quick and doesnt even always need an antibiotic.
Sometimes i feel really guilty and I hate so much that she has to have this crappy disease too ... but it just makes her even more special to me and is why we have such a stronger connection and I can really relate with her on another level and I know how she feels and know what it feels like .
by the way I am interested too when it comes to cf mother having cf kids, I want to think there was another girl on here but I'm not sure, I just know its not so common.</end quote></div>
Hi Laura, Thank you for sharing your story with us.. I totally understand the close connection you have w/ your daughter. While i myself have CF and dont have a child w/ CF i have found that the connection w/ another CFer can be immediate and strong..
I was a late dx. I remember when i was first dxd i finally felt i belonged somewhere , that ppl understood exactly what i was going through/feeling.. I think beside praying to God this site has been a life saver for me in many ways..
There are several parent/child/children ppl on this site..
Take care & God Bless you, your daughter and husband..
<img src="i/expressions/heart.gif" border="0"> joni
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
I have CF and so does my daughter
</end quote>
i'm always interested when i hear CF patients having CF kids.
was the baby's father not tested for CF carrier status?
sorry if I'm too personal - just curious.</end quote>
I totally don't mind the question at all, otherwise I wouldn't be posting on here <img src="">
First off please excuse any spelling/grammar errors, I am going to try to type fast lol
My husband actually didn't have any genetic testing done. I'd been off birth control 3 years and weren't trying or preventing, I had always wanted to have a child but never really thought when the time came that I'd be able to, and I thought that it would be something that I'd really have to plan and try hard at and possibly even get help with,I had planned to have my husband tested but it just happened. we got married , bought a house, and one month later all of a sudden I was pregnant, we hadn't done anything different and like I said I'd been off the pill 3 years.
I feel like it was just meant to be. I felt like it was truly a miracle that I even got pregnant, and so I even opted out of having tests done while I was pregnant to see if she had cf. I never really thought she would have it because I never would have thought my husband was a carrier because his family didn't even know what cf was. I just didn't think he would be that 1 in 20 or 25 person that would be a carrier and then even if he was it was still a 50/50 chance to have a child with cf.
Anyhow my daughter was born 3 weeks early, I had spent the last month in the hospital, pregnancy was hard on my body, I developed diabetes (that I still have now) and they finally induced me at 37 weeks, she was 5 ls 9 oz and very healthy at birth. Actually the doctors had no reason to believe she had cf, no symptoms. they said we should wait until at least 6 months of age to start sweat testing, the only reason we were doing the test was b/c of the possibility not b/c we thought she had it. well to my surprise she had 2 postive sweat tests and then we did the dna testing and after 3 weeks of waiting i got the call that she was positive.
i knew there was the possibility but i still hoped and prayed she could just be healthy, with all that I went through and how hard the pregnancy was ... I was so hopeful b/c the dr didnt think she had it and she didnt seem like she did and i went almost 9 months thinking my body actually created a healthy baby.
it turns out though the copy of the gene she got from my husband makes it so she has it milder than myself,so far she is even pancreatic sufficient, but we have to keep an eye on that , her dr says it could change. actually her dr is my former pulmonologist.
so yea it's definitely really difficult at times to care for her and myself. she does the vest and pulmozyme so far. she's doing really well she has only had a few minor infections from colds but she bounces back really quick and doesnt even always need an antibiotic.
Sometimes i feel really guilty and I hate so much that she has to have this crappy disease too ... but it just makes her even more special to me and is why we have such a stronger connection and I can really relate with her on another level and I know how she feels and know what it feels like .
by the way I am interested too when it comes to cf mother having cf kids, I want to think there was another girl on here but I'm not sure, I just know its not so common.</end quote>
Hi Laura, Thank you for sharing your story with us.. I totally understand the close connection you have w/ your daughter. While i myself have CF and dont have a child w/ CF i have found that the connection w/ another CFer can be immediate and strong..
I was a late dx. I remember when i was first dxd i finally felt i belonged somewhere , that ppl understood exactly what i was going through/feeling.. I think beside praying to God this site has been a life saver for me in many ways..
There are several parent/child/children ppl on this site..
Take care & God Bless you, your daughter and husband..
<img src="i/expressions/heart.gif" border="0"> joni
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
I have CF and so does my daughter
</end quote>
i'm always interested when i hear CF patients having CF kids.
was the baby's father not tested for CF carrier status?
sorry if I'm too personal - just curious.</end quote>
I totally don't mind the question at all, otherwise I wouldn't be posting on here <img src="">
First off please excuse any spelling/grammar errors, I am going to try to type fast lol
My husband actually didn't have any genetic testing done. I'd been off birth control 3 years and weren't trying or preventing, I had always wanted to have a child but never really thought when the time came that I'd be able to, and I thought that it would be something that I'd really have to plan and try hard at and possibly even get help with,I had planned to have my husband tested but it just happened. we got married , bought a house, and one month later all of a sudden I was pregnant, we hadn't done anything different and like I said I'd been off the pill 3 years.
I feel like it was just meant to be. I felt like it was truly a miracle that I even got pregnant, and so I even opted out of having tests done while I was pregnant to see if she had cf. I never really thought she would have it because I never would have thought my husband was a carrier because his family didn't even know what cf was. I just didn't think he would be that 1 in 20 or 25 person that would be a carrier and then even if he was it was still a 50/50 chance to have a child with cf.
Anyhow my daughter was born 3 weeks early, I had spent the last month in the hospital, pregnancy was hard on my body, I developed diabetes (that I still have now) and they finally induced me at 37 weeks, she was 5 ls 9 oz and very healthy at birth. Actually the doctors had no reason to believe she had cf, no symptoms. they said we should wait until at least 6 months of age to start sweat testing, the only reason we were doing the test was b/c of the possibility not b/c we thought she had it. well to my surprise she had 2 postive sweat tests and then we did the dna testing and after 3 weeks of waiting i got the call that she was positive.
i knew there was the possibility but i still hoped and prayed she could just be healthy, with all that I went through and how hard the pregnancy was ... I was so hopeful b/c the dr didnt think she had it and she didnt seem like she did and i went almost 9 months thinking my body actually created a healthy baby.
it turns out though the copy of the gene she got from my husband makes it so she has it milder than myself,so far she is even pancreatic sufficient, but we have to keep an eye on that , her dr says it could change. actually her dr is my former pulmonologist.
so yea it's definitely really difficult at times to care for her and myself. she does the vest and pulmozyme so far. she's doing really well she has only had a few minor infections from colds but she bounces back really quick and doesnt even always need an antibiotic.
Sometimes i feel really guilty and I hate so much that she has to have this crappy disease too ... but it just makes her even more special to me and is why we have such a stronger connection and I can really relate with her on another level and I know how she feels and know what it feels like .
by the way I am interested too when it comes to cf mother having cf kids, I want to think there was another girl on here but I'm not sure, I just know its not so common.</end quote>
Hi Laura, Thank you for sharing your story with us.. I totally understand the close connection you have w/ your daughter. While i myself have CF and dont have a child w/ CF i have found that the connection w/ another CFer can be immediate and strong..
I was a late dx. I remember when i was first dxd i finally felt i belonged somewhere , that ppl understood exactly what i was going through/feeling.. I think beside praying to God this site has been a life saver for me in many ways..
There are several parent/child/children ppl on this site..
Take care & God Bless you, your daughter and husband..
<img src="i/expressions/heart.gif" border="0"> joni
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<br />
<br />
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br /> I have CF and so does my daughter
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br /></end quote>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />i'm always interested when i hear CF patients having CF kids.
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />was the baby's father not tested for CF carrier status?
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />sorry if I'm too personal - just curious.</end quote>
<br />
<br />
<br />
<br />
<br />
<br />I totally don't mind the question at all, otherwise I wouldn't be posting on here <img src="">
<br />
<br />
<br />
<br />First off please excuse any spelling/grammar errors, I am going to try to type fast lol
<br />
<br />
<br />
<br />
<br />
<br />My husband actually didn't have any genetic testing done. I'd been off birth control 3 years and weren't trying or preventing, I had always wanted to have a child but never really thought when the time came that I'd be able to, and I thought that it would be something that I'd really have to plan and try hard at and possibly even get help with,I had planned to have my husband tested but it just happened. we got married , bought a house, and one month later all of a sudden I was pregnant, we hadn't done anything different and like I said I'd been off the pill 3 years.
<br />
<br />I feel like it was just meant to be. I felt like it was truly a miracle that I even got pregnant, and so I even opted out of having tests done while I was pregnant to see if she had cf. I never really thought she would have it because I never would have thought my husband was a carrier because his family didn't even know what cf was. I just didn't think he would be that 1 in 20 or 25 person that would be a carrier and then even if he was it was still a 50/50 chance to have a child with cf.
<br />
<br />
<br />
<br />Anyhow my daughter was born 3 weeks early, I had spent the last month in the hospital, pregnancy was hard on my body, I developed diabetes (that I still have now) and they finally induced me at 37 weeks, she was 5 ls 9 oz and very healthy at birth. Actually the doctors had no reason to believe she had cf, no symptoms. they said we should wait until at least 6 months of age to start sweat testing, the only reason we were doing the test was b/c of the possibility not b/c we thought she had it. well to my surprise she had 2 postive sweat tests and then we did the dna testing and after 3 weeks of waiting i got the call that she was positive.
<br />
<br />i knew there was the possibility but i still hoped and prayed she could just be healthy, with all that I went through and how hard the pregnancy was ... I was so hopeful b/c the dr didnt think she had it and she didnt seem like she did and i went almost 9 months thinking my body actually created a healthy baby.
<br />
<br />it turns out though the copy of the gene she got from my husband makes it so she has it milder than myself,so far she is even pancreatic sufficient, but we have to keep an eye on that , her dr says it could change. actually her dr is my former pulmonologist.
<br />
<br />
<br />
<br />so yea it's definitely really difficult at times to care for her and myself. she does the vest and pulmozyme so far. she's doing really well she has only had a few minor infections from colds but she bounces back really quick and doesnt even always need an antibiotic.
<br />
<br />Sometimes i feel really guilty and I hate so much that she has to have this crappy disease too ... but it just makes her even more special to me and is why we have such a stronger connection and I can really relate with her on another level and I know how she feels and know what it feels like .
<br />
<br />
<br />
<br />by the way I am interested too when it comes to cf mother having cf kids, I want to think there was another girl on here but I'm not sure, I just know its not so common.</end quote>
<br />
<br />
<br />
<br />
<br />Hi Laura, Thank you for sharing your story with us.. I totally understand the close connection you have w/ your daughter. While i myself have CF and dont have a child w/ CF i have found that the connection w/ another CFer can be immediate and strong..
<br />
<br /> I was a late dx. I remember when i was first dxd i finally felt i belonged somewhere , that ppl understood exactly what i was going through/feeling.. I think beside praying to God this site has been a life saver for me in many ways..
<br />
<br />There are several parent/child/children ppl on this site..
<br />
<br />Take care & God Bless you, your daughter and husband..
<br />
<br />
<br /><img src="i/expressions/heart.gif" border="0"> joni
<br />
<br />
<br />
<br />
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<br />
<br />
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>EmilysMomma</b></i>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br /> I have CF and so does my daughter
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br /></end quote>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />i'm always interested when i hear CF patients having CF kids.
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />was the baby's father not tested for CF carrier status?
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />sorry if I'm too personal - just curious.</end quote>
<br />
<br />
<br />
<br />
<br />
<br />I totally don't mind the question at all, otherwise I wouldn't be posting on here <img src="">
<br />
<br />
<br />
<br />First off please excuse any spelling/grammar errors, I am going to try to type fast lol
<br />
<br />
<br />
<br />
<br />
<br />My husband actually didn't have any genetic testing done. I'd been off birth control 3 years and weren't trying or preventing, I had always wanted to have a child but never really thought when the time came that I'd be able to, and I thought that it would be something that I'd really have to plan and try hard at and possibly even get help with,I had planned to have my husband tested but it just happened. we got married , bought a house, and one month later all of a sudden I was pregnant, we hadn't done anything different and like I said I'd been off the pill 3 years.
<br />
<br />I feel like it was just meant to be. I felt like it was truly a miracle that I even got pregnant, and so I even opted out of having tests done while I was pregnant to see if she had cf. I never really thought she would have it because I never would have thought my husband was a carrier because his family didn't even know what cf was. I just didn't think he would be that 1 in 20 or 25 person that would be a carrier and then even if he was it was still a 50/50 chance to have a child with cf.
<br />
<br />
<br />
<br />Anyhow my daughter was born 3 weeks early, I had spent the last month in the hospital, pregnancy was hard on my body, I developed diabetes (that I still have now) and they finally induced me at 37 weeks, she was 5 ls 9 oz and very healthy at birth. Actually the doctors had no reason to believe she had cf, no symptoms. they said we should wait until at least 6 months of age to start sweat testing, the only reason we were doing the test was b/c of the possibility not b/c we thought she had it. well to my surprise she had 2 postive sweat tests and then we did the dna testing and after 3 weeks of waiting i got the call that she was positive.
<br />
<br />i knew there was the possibility but i still hoped and prayed she could just be healthy, with all that I went through and how hard the pregnancy was ... I was so hopeful b/c the dr didnt think she had it and she didnt seem like she did and i went almost 9 months thinking my body actually created a healthy baby.
<br />
<br />it turns out though the copy of the gene she got from my husband makes it so she has it milder than myself,so far she is even pancreatic sufficient, but we have to keep an eye on that , her dr says it could change. actually her dr is my former pulmonologist.
<br />
<br />
<br />
<br />so yea it's definitely really difficult at times to care for her and myself. she does the vest and pulmozyme so far. she's doing really well she has only had a few minor infections from colds but she bounces back really quick and doesnt even always need an antibiotic.
<br />
<br />Sometimes i feel really guilty and I hate so much that she has to have this crappy disease too ... but it just makes her even more special to me and is why we have such a stronger connection and I can really relate with her on another level and I know how she feels and know what it feels like .
<br />
<br />
<br />
<br />by the way I am interested too when it comes to cf mother having cf kids, I want to think there was another girl on here but I'm not sure, I just know its not so common.</end quote>
<br />
<br />
<br />
<br />
<br />Hi Laura, Thank you for sharing your story with us.. I totally understand the close connection you have w/ your daughter. While i myself have CF and dont have a child w/ CF i have found that the connection w/ another CFer can be immediate and strong..
<br />
<br /> I was a late dx. I remember when i was first dxd i finally felt i belonged somewhere , that ppl understood exactly what i was going through/feeling.. I think beside praying to God this site has been a life saver for me in many ways..
<br />
<br />There are several parent/child/children ppl on this site..
<br />
<br />Take care & God Bless you, your daughter and husband..
<br />
<br />
<br /><img src="i/expressions/heart.gif" border="0"> joni
<br />
<br />
<br />
<br />
I didnt see the episode, but i am glad cf is getting some attention. I am also glad to hear they threw cepacia in the mix, <b>maybe it will inspire someone .... anyone to do some more badly needed research on what to do to help those of us with it</b>. Its probably better i didnt watch it because it may have just angered me judging by the responses on here. Like someone else mentioned, <b>any</b> cf advertisement is better than none.
I didnt see the episode, but i am glad cf is getting some attention. I am also glad to hear they threw cepacia in the mix, <b>maybe it will inspire someone .... anyone to do some more badly needed research on what to do to help those of us with it</b>. Its probably better i didnt watch it because it may have just angered me judging by the responses on here. Like someone else mentioned, <b>any</b> cf advertisement is better than none.
I didnt see the episode, but i am glad cf is getting some attention. I am also glad to hear they threw cepacia in the mix, <b>maybe it will inspire someone .... anyone to do some more badly needed research on what to do to help those of us with it</b>. Its probably better i didnt watch it because it may have just angered me judging by the responses on here. Like someone else mentioned, <b>any</b> cf advertisement is better than none.
I didnt see the episode, but i am glad cf is getting some attention. I am also glad to hear they threw cepacia in the mix, <b>maybe it will inspire someone .... anyone to do some more badly needed research on what to do to help those of us with it</b>. Its probably better i didnt watch it because it may have just angered me judging by the responses on here. Like someone else mentioned, <b>any</b> cf advertisement is better than none.
I didnt see the episode, but i am glad cf is getting some attention. I am also glad to hear they threw cepacia in the mix, <b>maybe it will inspire someone .... anyone to do some more badly needed research on what to do to help those of us with it</b>. Its probably better i didnt watch it because it may have just angered me judging by the responses on here. Like someone else mentioned, <b>any</b> cf advertisement is better than none.
Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
I'm not passing any judgment on individuals and family choices here, but it seems unlikely to me that two cystics would marry and then pursue biological children. Maybe I'm wrong about that? Again, not trying to judge by any means, it just didn't make a lot of sense to me.</end quote></div>
Hey Piper....just wanted to let you know that when I was in Cleveland for a follow-up last year, I met a couple where both of them have CF. The guy had a double lung transplant about 7 years ago and the girl had not had transplant and was doing fairly well. And yes....they were talking about having children one day.
I'm not passing any judgment on individuals and family choices here, but it seems unlikely to me that two cystics would marry and then pursue biological children. Maybe I'm wrong about that? Again, not trying to judge by any means, it just didn't make a lot of sense to me.</end quote></div>
Hey Piper....just wanted to let you know that when I was in Cleveland for a follow-up last year, I met a couple where both of them have CF. The guy had a double lung transplant about 7 years ago and the girl had not had transplant and was doing fairly well. And yes....they were talking about having children one day.
Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
I'm not passing any judgment on individuals and family choices here, but it seems unlikely to me that two cystics would marry and then pursue biological children. Maybe I'm wrong about that? Again, not trying to judge by any means, it just didn't make a lot of sense to me.</end quote></div>
Hey Piper....just wanted to let you know that when I was in Cleveland for a follow-up last year, I met a couple where both of them have CF. The guy had a double lung transplant about 7 years ago and the girl had not had transplant and was doing fairly well. And yes....they were talking about having children one day.
I'm not passing any judgment on individuals and family choices here, but it seems unlikely to me that two cystics would marry and then pursue biological children. Maybe I'm wrong about that? Again, not trying to judge by any means, it just didn't make a lot of sense to me.</end quote></div>
Hey Piper....just wanted to let you know that when I was in Cleveland for a follow-up last year, I met a couple where both of them have CF. The guy had a double lung transplant about 7 years ago and the girl had not had transplant and was doing fairly well. And yes....they were talking about having children one day.
Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
I'm not passing any judgment on individuals and family choices here, but it seems unlikely to me that two cystics would marry and then pursue biological children. Maybe I'm wrong about that? Again, not trying to judge by any means, it just didn't make a lot of sense to me.</end quote></div>
Hey Piper....just wanted to let you know that when I was in Cleveland for a follow-up last year, I met a couple where both of them have CF. The guy had a double lung transplant about 7 years ago and the girl had not had transplant and was doing fairly well. And yes....they were talking about having children one day.
I'm not passing any judgment on individuals and family choices here, but it seems unlikely to me that two cystics would marry and then pursue biological children. Maybe I'm wrong about that? Again, not trying to judge by any means, it just didn't make a lot of sense to me.</end quote></div>
Hey Piper....just wanted to let you know that when I was in Cleveland for a follow-up last year, I met a couple where both of them have CF. The guy had a double lung transplant about 7 years ago and the girl had not had transplant and was doing fairly well. And yes....they were talking about having children one day.
Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
I'm not passing any judgment on individuals and family choices here, but it seems unlikely to me that two cystics would marry and then pursue biological children. Maybe I'm wrong about that? Again, not trying to judge by any means, it just didn't make a lot of sense to me.</end quote>
Hey Piper....just wanted to let you know that when I was in Cleveland for a follow-up last year, I met a couple where both of them have CF. The guy had a double lung transplant about 7 years ago and the girl had not had transplant and was doing fairly well. And yes....they were talking about having children one day.
I'm not passing any judgment on individuals and family choices here, but it seems unlikely to me that two cystics would marry and then pursue biological children. Maybe I'm wrong about that? Again, not trying to judge by any means, it just didn't make a lot of sense to me.</end quote>
Hey Piper....just wanted to let you know that when I was in Cleveland for a follow-up last year, I met a couple where both of them have CF. The guy had a double lung transplant about 7 years ago and the girl had not had transplant and was doing fairly well. And yes....they were talking about having children one day.
Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
<br />
<br />I'm not passing any judgment on individuals and family choices here, but it seems unlikely to me that two cystics would marry and then pursue biological children. Maybe I'm wrong about that? Again, not trying to judge by any means, it just didn't make a lot of sense to me.</end quote>
<br />
<br />
<br />Hey Piper....just wanted to let you know that when I was in Cleveland for a follow-up last year, I met a couple where both of them have CF. The guy had a double lung transplant about 7 years ago and the girl had not had transplant and was doing fairly well. And yes....they were talking about having children one day.
<br />
<br />
<br />I'm not passing any judgment on individuals and family choices here, but it seems unlikely to me that two cystics would marry and then pursue biological children. Maybe I'm wrong about that? Again, not trying to judge by any means, it just didn't make a lot of sense to me.</end quote>
<br />
<br />
<br />Hey Piper....just wanted to let you know that when I was in Cleveland for a follow-up last year, I met a couple where both of them have CF. The guy had a double lung transplant about 7 years ago and the girl had not had transplant and was doing fairly well. And yes....they were talking about having children one day.
<br />