Tonights Private Practice episode - CF & B Cepacia

J

JazzysMom

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

<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.</end quote></div>

There was a couple that belonged to CF2chat who both had CF. The husband died....I believe after a tx. She had kids, but they were not his.
 
J

JazzysMom

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

<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.</end quote></div>

There was a couple that belonged to CF2chat who both had CF. The husband died....I believe after a tx. She had kids, but they were not his.
 
J

JazzysMom

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

<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.</end quote></div>

There was a couple that belonged to CF2chat who both had CF. The husband died....I believe after a tx. She had kids, but they were not his.
 
J

JazzysMom

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

<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.</end quote>

There was a couple that belonged to CF2chat who both had CF. The husband died....I believe after a tx. She had kids, but they were not his.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Transplantmommy</b></i>
<br />
<br /><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 />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.</end quote>
<br />
<br />There was a couple that belonged to CF2chat who both had CF. The husband died....I believe after a tx. She had kids, but they were not his.
<br />
<br />
 
S

Skye

New member
You know.....if even one of those produces had come to THIS forum and asked a FEW basic questions, they would have trashed the whole CF script and gone with a more contagious and more sensational disease. I think they need to consult this forum in the future and I think I will send an e-mail with that suggestion<img src=""> I am really glad the whole down hill fast and isolation from ALL family and doctors playing hanky panky over our petri dishes was FAR from reality!!!!!! How depressing and sleazy. (sorry about sp...it's late)
 
S

Skye

New member
You know.....if even one of those produces had come to THIS forum and asked a FEW basic questions, they would have trashed the whole CF script and gone with a more contagious and more sensational disease. I think they need to consult this forum in the future and I think I will send an e-mail with that suggestion<img src=""> I am really glad the whole down hill fast and isolation from ALL family and doctors playing hanky panky over our petri dishes was FAR from reality!!!!!! How depressing and sleazy. (sorry about sp...it's late)
 
S

Skye

New member
You know.....if even one of those produces had come to THIS forum and asked a FEW basic questions, they would have trashed the whole CF script and gone with a more contagious and more sensational disease. I think they need to consult this forum in the future and I think I will send an e-mail with that suggestion<img src=""> I am really glad the whole down hill fast and isolation from ALL family and doctors playing hanky panky over our petri dishes was FAR from reality!!!!!! How depressing and sleazy. (sorry about sp...it's late)
 
S

Skye

New member
You know.....if even one of those produces had come to THIS forum and asked a FEW basic questions, they would have trashed the whole CF script and gone with a more contagious and more sensational disease. I think they need to consult this forum in the future and I think I will send an e-mail with that suggestion<img src=""> I am really glad the whole down hill fast and isolation from ALL family and doctors playing hanky panky over our petri dishes was FAR from reality!!!!!! How depressing and sleazy. (sorry about sp...it's late)
 
S

Skye

New member
You know.....if even one of those produces had come to THIS forum and asked a FEW basic questions, they would have trashed the whole CF script and gone with a more contagious and more sensational disease. I think they need to consult this forum in the future and I think I will send an e-mail with that suggestion<img src=""> I am really glad the whole down hill fast and isolation from ALL family and doctors playing hanky panky over our petri dishes was FAR from reality!!!!!! How depressing and sleazy. (sorry about sp...it's late)
 
M

Mommafirst

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

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...</end quote></div>

Tammy, I'm very glad your girls didn't see this either. I was thinking about your family while I watched and felt that it was a very irresponsible portrayal for the reason of families like yours!!! (((HUGS)))
 
M

Mommafirst

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

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...</end quote></div>

Tammy, I'm very glad your girls didn't see this either. I was thinking about your family while I watched and felt that it was a very irresponsible portrayal for the reason of families like yours!!! (((HUGS)))
 
M

Mommafirst

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

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...</end quote></div>

Tammy, I'm very glad your girls didn't see this either. I was thinking about your family while I watched and felt that it was a very irresponsible portrayal for the reason of families like yours!!! (((HUGS)))
 
M

Mommafirst

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

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...</end quote>

Tammy, I'm very glad your girls didn't see this either. I was thinking about your family while I watched and felt that it was a very irresponsible portrayal for the reason of families like yours!!! (((HUGS)))
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tammykrumrey</b></i>
<br />
<br />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 />
<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...</end quote>
<br />
<br />Tammy, I'm very glad your girls didn't see this either. I was thinking about your family while I watched and felt that it was a very irresponsible portrayal for the reason of families like yours!!! (((HUGS)))
<br />
<br />
 
L

lightNlife

New member
I only watched the first 15 minutes before turning it off. As a cepacia patient, the bit that I watched made me feel even more like an untouchable leper. The episode was rife with inaccuracies from what I gather. I've had cepacia for more than 10 years now. I did not suddenly drop dead from catching it (obviously). A rapid decline in health when infected by a certain strand of cepacia is called "cepacia syndrome." Some CFers lose their battle that way, but others don't.

Also, anecdotal evidence suggests that when there is more than one CFer in a family, cross contamination doesn't occur as often as you'd think. I've heard plenty of stories of siblings having CF and they don't necessarily infect one another repeatedly. Ana and Isa Stenzel are probably the best example of that.

Okay, I'm done ranting now.
 
L

lightNlife

New member
I only watched the first 15 minutes before turning it off. As a cepacia patient, the bit that I watched made me feel even more like an untouchable leper. The episode was rife with inaccuracies from what I gather. I've had cepacia for more than 10 years now. I did not suddenly drop dead from catching it (obviously). A rapid decline in health when infected by a certain strand of cepacia is called "cepacia syndrome." Some CFers lose their battle that way, but others don't.

Also, anecdotal evidence suggests that when there is more than one CFer in a family, cross contamination doesn't occur as often as you'd think. I've heard plenty of stories of siblings having CF and they don't necessarily infect one another repeatedly. Ana and Isa Stenzel are probably the best example of that.

Okay, I'm done ranting now.
 
L

lightNlife

New member
I only watched the first 15 minutes before turning it off. As a cepacia patient, the bit that I watched made me feel even more like an untouchable leper. The episode was rife with inaccuracies from what I gather. I've had cepacia for more than 10 years now. I did not suddenly drop dead from catching it (obviously). A rapid decline in health when infected by a certain strand of cepacia is called "cepacia syndrome." Some CFers lose their battle that way, but others don't.

Also, anecdotal evidence suggests that when there is more than one CFer in a family, cross contamination doesn't occur as often as you'd think. I've heard plenty of stories of siblings having CF and they don't necessarily infect one another repeatedly. Ana and Isa Stenzel are probably the best example of that.

Okay, I'm done ranting now.
 
L

lightNlife

New member
I only watched the first 15 minutes before turning it off. As a cepacia patient, the bit that I watched made me feel even more like an untouchable leper. The episode was rife with inaccuracies from what I gather. I've had cepacia for more than 10 years now. I did not suddenly drop dead from catching it (obviously). A rapid decline in health when infected by a certain strand of cepacia is called "cepacia syndrome." Some CFers lose their battle that way, but others don't.

Also, anecdotal evidence suggests that when there is more than one CFer in a family, cross contamination doesn't occur as often as you'd think. I've heard plenty of stories of siblings having CF and they don't necessarily infect one another repeatedly. Ana and Isa Stenzel are probably the best example of that.

Okay, I'm done ranting now.
 
L

lightNlife

New member
I only watched the first 15 minutes before turning it off. As a cepacia patient, the bit that I watched made me feel even more like an untouchable leper. The episode was rife with inaccuracies from what I gather. I've had cepacia for more than 10 years now. I did not suddenly drop dead from catching it (obviously). A rapid decline in health when infected by a certain strand of cepacia is called "cepacia syndrome." Some CFers lose their battle that way, but others don't.
<br />
<br />Also, anecdotal evidence suggests that when there is more than one CFer in a family, cross contamination doesn't occur as often as you'd think. I've heard plenty of stories of siblings having CF and they don't necessarily infect one another repeatedly. Ana and Isa Stenzel are probably the best example of that.
<br />
<br />Okay, I'm done ranting now.
 
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