Tonights Private Practice episode - CF & B Cepacia

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Transplantmommy

New member
As for the genetic testing for the parent who does not have CF....Nate did not have the Ambry panel done. He was only tested for about 300 (?) mutations and we did have the understanding that there was still a 1/900 chance that Brady would have CF. We did not have this test until after we found out that I was pregnant but it wasn't going to stop me from keeping the baby. No matter if the baby had CF or not, I knew that I would love him no matter what.
 
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Transplantmommy

New member
As for the genetic testing for the parent who does not have CF....Nate did not have the Ambry panel done. He was only tested for about 300 (?) mutations and we did have the understanding that there was still a 1/900 chance that Brady would have CF. We did not have this test until after we found out that I was pregnant but it wasn't going to stop me from keeping the baby. No matter if the baby had CF or not, I knew that I would love him no matter what.
 
T

Transplantmommy

New member
As for the genetic testing for the parent who does not have CF....Nate did not have the Ambry panel done. He was only tested for about 300 (?) mutations and we did have the understanding that there was still a 1/900 chance that Brady would have CF. We did not have this test until after we found out that I was pregnant but it wasn't going to stop me from keeping the baby. No matter if the baby had CF or not, I knew that I would love him no matter what.
 
T

Transplantmommy

New member
As for the genetic testing for the parent who does not have CF....Nate did not have the Ambry panel done. He was only tested for about 300 (?) mutations and we did have the understanding that there was still a 1/900 chance that Brady would have CF. We did not have this test until after we found out that I was pregnant but it wasn't going to stop me from keeping the baby. No matter if the baby had CF or not, I knew that I would love him no matter what.
 
T

Transplantmommy

New member
As for the genetic testing for the parent who does not have CF....Nate did not have the Ambry panel done. He was only tested for about 300 (?) mutations and we did have the understanding that there was still a 1/900 chance that Brady would have CF. We did not have this test until after we found out that I was pregnant but it wasn't going to stop me from keeping the baby. No matter if the baby had CF or not, I knew that I would love him no matter what.
 
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lilywing

New member
I thought the show SUCKED. I appreciate the attempt to put CF out there, but I don't appreciate the inaccuracy. Depicting b.c as a sudden and certain death sentence was, in fact, doing a disservice. Apparantly, the facts of cepacia are not dramatic enough for prime time, so they've gotta spice it up. I am offended by this, and I would hope I'm not the only one. In my opinion and experience, cystic fibrosis is a complex and devastating disease all on it's own, no need to distort the facts.

I wish I hadn't wasted my time watching the show. I'm always waiting for the time they get it right!

Another question came to mind: Why did Addison cut her hair like that? Not very L.A., if they ask me. But they won't.
 
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lilywing

New member
I thought the show SUCKED. I appreciate the attempt to put CF out there, but I don't appreciate the inaccuracy. Depicting b.c as a sudden and certain death sentence was, in fact, doing a disservice. Apparantly, the facts of cepacia are not dramatic enough for prime time, so they've gotta spice it up. I am offended by this, and I would hope I'm not the only one. In my opinion and experience, cystic fibrosis is a complex and devastating disease all on it's own, no need to distort the facts.

I wish I hadn't wasted my time watching the show. I'm always waiting for the time they get it right!

Another question came to mind: Why did Addison cut her hair like that? Not very L.A., if they ask me. But they won't.
 
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lilywing

New member
I thought the show SUCKED. I appreciate the attempt to put CF out there, but I don't appreciate the inaccuracy. Depicting b.c as a sudden and certain death sentence was, in fact, doing a disservice. Apparantly, the facts of cepacia are not dramatic enough for prime time, so they've gotta spice it up. I am offended by this, and I would hope I'm not the only one. In my opinion and experience, cystic fibrosis is a complex and devastating disease all on it's own, no need to distort the facts.

I wish I hadn't wasted my time watching the show. I'm always waiting for the time they get it right!

Another question came to mind: Why did Addison cut her hair like that? Not very L.A., if they ask me. But they won't.
 
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lilywing

New member
I thought the show SUCKED. I appreciate the attempt to put CF out there, but I don't appreciate the inaccuracy. Depicting b.c as a sudden and certain death sentence was, in fact, doing a disservice. Apparantly, the facts of cepacia are not dramatic enough for prime time, so they've gotta spice it up. I am offended by this, and I would hope I'm not the only one. In my opinion and experience, cystic fibrosis is a complex and devastating disease all on it's own, no need to distort the facts.

I wish I hadn't wasted my time watching the show. I'm always waiting for the time they get it right!

Another question came to mind: Why did Addison cut her hair like that? Not very L.A., if they ask me. But they won't.
 
L

lilywing

New member
I thought the show SUCKED. I appreciate the attempt to put CF out there, but I don't appreciate the inaccuracy. Depicting b.c as a sudden and certain death sentence was, in fact, doing a disservice. Apparantly, the facts of cepacia are not dramatic enough for prime time, so they've gotta spice it up. I am offended by this, and I would hope I'm not the only one. In my opinion and experience, cystic fibrosis is a complex and devastating disease all on it's own, no need to distort the facts.
<br />
<br />I wish I hadn't wasted my time watching the show. I'm always waiting for the time they get it right!
<br />
<br />Another question came to mind: Why did Addison cut her hair like that? Not very L.A., if they ask me. But they won't.
 
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NYCLawGirl

New member
Lily, I think the show was trying to get across that she had cepacia syndrome (they actually used those words a couple of times). In my understanding this is the term applied when people suffer a rapid and severe decline shortly after culturing cepacia. So in that sense, what they were portraying wasn't necessarily unrealistic, just rare. I thought it was very lame that they didn't mention the distinction between cepacia and the much rarer cepacia syndrome reaction, though. And the whole "you will die" line KILLED me (pun intended).

Interesting about the CFers at Cleveland, Patti. I know cystic/cystic couples, but I was surprised by the premise of a whole CF family on TV, I guess. Just think of all the nebs you'd need to keep up with 4 cystics in the house, lol!
 
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NYCLawGirl

New member
Lily, I think the show was trying to get across that she had cepacia syndrome (they actually used those words a couple of times). In my understanding this is the term applied when people suffer a rapid and severe decline shortly after culturing cepacia. So in that sense, what they were portraying wasn't necessarily unrealistic, just rare. I thought it was very lame that they didn't mention the distinction between cepacia and the much rarer cepacia syndrome reaction, though. And the whole "you will die" line KILLED me (pun intended).

Interesting about the CFers at Cleveland, Patti. I know cystic/cystic couples, but I was surprised by the premise of a whole CF family on TV, I guess. Just think of all the nebs you'd need to keep up with 4 cystics in the house, lol!
 
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NYCLawGirl

New member
Lily, I think the show was trying to get across that she had cepacia syndrome (they actually used those words a couple of times). In my understanding this is the term applied when people suffer a rapid and severe decline shortly after culturing cepacia. So in that sense, what they were portraying wasn't necessarily unrealistic, just rare. I thought it was very lame that they didn't mention the distinction between cepacia and the much rarer cepacia syndrome reaction, though. And the whole "you will die" line KILLED me (pun intended).

Interesting about the CFers at Cleveland, Patti. I know cystic/cystic couples, but I was surprised by the premise of a whole CF family on TV, I guess. Just think of all the nebs you'd need to keep up with 4 cystics in the house, lol!
 
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NYCLawGirl

New member
Lily, I think the show was trying to get across that she had cepacia syndrome (they actually used those words a couple of times). In my understanding this is the term applied when people suffer a rapid and severe decline shortly after culturing cepacia. So in that sense, what they were portraying wasn't necessarily unrealistic, just rare. I thought it was very lame that they didn't mention the distinction between cepacia and the much rarer cepacia syndrome reaction, though. And the whole "you will die" line KILLED me (pun intended).

Interesting about the CFers at Cleveland, Patti. I know cystic/cystic couples, but I was surprised by the premise of a whole CF family on TV, I guess. Just think of all the nebs you'd need to keep up with 4 cystics in the house, lol!
 
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NYCLawGirl

New member
Lily, I think the show was trying to get across that she had cepacia syndrome (they actually used those words a couple of times). In my understanding this is the term applied when people suffer a rapid and severe decline shortly after culturing cepacia. So in that sense, what they were portraying wasn't necessarily unrealistic, just rare. I thought it was very lame that they didn't mention the distinction between cepacia and the much rarer cepacia syndrome reaction, though. And the whole "you will die" line KILLED me (pun intended).
<br />
<br />Interesting about the CFers at Cleveland, Patti. I know cystic/cystic couples, but I was surprised by the premise of a whole CF family on TV, I guess. Just think of all the nebs you'd need to keep up with 4 cystics in the house, lol!
 
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tammykrumrey

Guest
I did not see the show, and glad that I didn't accidently run across it and start...I would had hated for Kayla (who cultures Cepacia) to see that! And Hannah would had been scared to death to come anywhere near her sister if she had seen it!
Having two kids who have CF is hard enough, without adding Cepacia into the mix. But since my kids are so young, there is just not a lot I can do. Can't make one move out for goodness sake. I am just so happy that my girls didn't see it...
 
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tammykrumrey

Guest
I did not see the show, and glad that I didn't accidently run across it and start...I would had hated for Kayla (who cultures Cepacia) to see that! And Hannah would had been scared to death to come anywhere near her sister if she had seen it!
Having two kids who have CF is hard enough, without adding Cepacia into the mix. But since my kids are so young, there is just not a lot I can do. Can't make one move out for goodness sake. I am just so happy that my girls didn't see it...
 
T

tammykrumrey

Guest
I did not see the show, and glad that I didn't accidently run across it and start...I would had hated for Kayla (who cultures Cepacia) to see that! And Hannah would had been scared to death to come anywhere near her sister if she had seen it!
Having two kids who have CF is hard enough, without adding Cepacia into the mix. But since my kids are so young, there is just not a lot I can do. Can't make one move out for goodness sake. I am just so happy that my girls didn't see it...
 
T

tammykrumrey

Guest
I did not see the show, and glad that I didn't accidently run across it and start...I would had hated for Kayla (who cultures Cepacia) to see that! And Hannah would had been scared to death to come anywhere near her sister if she had seen it!
Having two kids who have CF is hard enough, without adding Cepacia into the mix. But since my kids are so young, there is just not a lot I can do. Can't make one move out for goodness sake. I am just so happy that my girls didn't see it...
 
T

tammykrumrey

Guest
I did not see the show, and glad that I didn't accidently run across it and start...I would had hated for Kayla (who cultures Cepacia) to see that! And Hannah would had been scared to death to come anywhere near her sister if she had seen it!
<br />Having two kids who have CF is hard enough, without adding Cepacia into the mix. But since my kids are so young, there is just not a lot I can do. Can't make one move out for goodness sake. I am just so happy that my girls didn't see it...
 
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