Feeling Neurotic

PACmommy

New member
I'm Soooo glad I found this sight!
My name is Rebecca, and I am a mother of 3. Payton 5, Ainsley 3 and Calder 17 months. Our daughter Ainsley was diagnosed with Cystic Fibrosis in September and her health has been our main concern on a daily basis.
On top of seeing her CF doctor, we have also seen a ear, nose throat specialist because she has an unusual amount of mucous running out of her nose at all times. We are now scheduled to see a Pediatric Cardiologist because of some concerns about her heart.
Not only was she born on the bathroom floor, but when we got to the hospital, she had a heart rate of 70 bpm and had to see a cardiologist atone week old, at which time, he said she was fine. At seven weeks, it was thought she had RSV and was put on a heart and resp. rate monitor on which her heart rate kept dropping. Now just being a newly diagnosed CF patient they've just found out that she has a heart murmer. She constantly goes white as a sheet for no apparent reason, as well there is a history on my mother's side of heart problems.
After the CF diagnosis, you don't want any other health issues. Am I being neurotic? Am I just to show concern? Has anybody ever heard of heart issues related with CF? I would like any input if you have any.
 

PACmommy

New member
I'm Soooo glad I found this sight!
My name is Rebecca, and I am a mother of 3. Payton 5, Ainsley 3 and Calder 17 months. Our daughter Ainsley was diagnosed with Cystic Fibrosis in September and her health has been our main concern on a daily basis.
On top of seeing her CF doctor, we have also seen a ear, nose throat specialist because she has an unusual amount of mucous running out of her nose at all times. We are now scheduled to see a Pediatric Cardiologist because of some concerns about her heart.
Not only was she born on the bathroom floor, but when we got to the hospital, she had a heart rate of 70 bpm and had to see a cardiologist atone week old, at which time, he said she was fine. At seven weeks, it was thought she had RSV and was put on a heart and resp. rate monitor on which her heart rate kept dropping. Now just being a newly diagnosed CF patient they've just found out that she has a heart murmer. She constantly goes white as a sheet for no apparent reason, as well there is a history on my mother's side of heart problems.
After the CF diagnosis, you don't want any other health issues. Am I being neurotic? Am I just to show concern? Has anybody ever heard of heart issues related with CF? I would like any input if you have any.
 

PACmommy

New member
I'm Soooo glad I found this sight!
My name is Rebecca, and I am a mother of 3. Payton 5, Ainsley 3 and Calder 17 months. Our daughter Ainsley was diagnosed with Cystic Fibrosis in September and her health has been our main concern on a daily basis.
On top of seeing her CF doctor, we have also seen a ear, nose throat specialist because she has an unusual amount of mucous running out of her nose at all times. We are now scheduled to see a Pediatric Cardiologist because of some concerns about her heart.
Not only was she born on the bathroom floor, but when we got to the hospital, she had a heart rate of 70 bpm and had to see a cardiologist atone week old, at which time, he said she was fine. At seven weeks, it was thought she had RSV and was put on a heart and resp. rate monitor on which her heart rate kept dropping. Now just being a newly diagnosed CF patient they've just found out that she has a heart murmer. She constantly goes white as a sheet for no apparent reason, as well there is a history on my mother's side of heart problems.
After the CF diagnosis, you don't want any other health issues. Am I being neurotic? Am I just to show concern? Has anybody ever heard of heart issues related with CF? I would like any input if you have any.
 

debs2girls

New member
PAC, I would think there was something wrong with you if your werent feeling neurotic...lol...I have had the same problems with my daughter...she was dx'd 14 months ago at age 5...her heart problems were brought to my attention at her one year check up and was supposed to have open heart surgery...Praise the Lord, she didnt have it, but still has some problems with her heart...I too have been feeling kind of neurotic, but hey, they are our kids are we entitled?

Good luck to you and your daughter....btw, I love yours kids names..and you could have been posting about my daughter...she has the same problems as Ainsley..

Keep us posted.
 

debs2girls

New member
PAC, I would think there was something wrong with you if your werent feeling neurotic...lol...I have had the same problems with my daughter...she was dx'd 14 months ago at age 5...her heart problems were brought to my attention at her one year check up and was supposed to have open heart surgery...Praise the Lord, she didnt have it, but still has some problems with her heart...I too have been feeling kind of neurotic, but hey, they are our kids are we entitled?

Good luck to you and your daughter....btw, I love yours kids names..and you could have been posting about my daughter...she has the same problems as Ainsley..

Keep us posted.
 

debs2girls

New member
PAC, I would think there was something wrong with you if your werent feeling neurotic...lol...I have had the same problems with my daughter...she was dx'd 14 months ago at age 5...her heart problems were brought to my attention at her one year check up and was supposed to have open heart surgery...Praise the Lord, she didnt have it, but still has some problems with her heart...I too have been feeling kind of neurotic, but hey, they are our kids are we entitled?

Good luck to you and your daughter....btw, I love yours kids names..and you could have been posting about my daughter...she has the same problems as Ainsley..

Keep us posted.
 

Emily65Roses

New member
Heart problems tend to come after time because the heart tries to pick up the slack from the lungs.

As for the murmur, I was told I had one too. Years ago. Never had any real problems with it, though. You're making sure she's seen and bringing up concerns with her doctors, and that's a good way to go.
 

Emily65Roses

New member
Heart problems tend to come after time because the heart tries to pick up the slack from the lungs.

As for the murmur, I was told I had one too. Years ago. Never had any real problems with it, though. You're making sure she's seen and bringing up concerns with her doctors, and that's a good way to go.
 

Emily65Roses

New member
Heart problems tend to come after time because the heart tries to pick up the slack from the lungs.

As for the murmur, I was told I had one too. Years ago. Never had any real problems with it, though. You're making sure she's seen and bringing up concerns with her doctors, and that's a good way to go.
 
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