To adults and teens with CF

Jane

Digital opinion leader
ALthough I am not a person with cf, I will share the words of my son who said, " I am glad we both have cf. It would be weird if one of us didn't. More complicated".
 

Jane

Digital opinion leader
ALthough I am not a person with cf, I will share the words of my son who said, " I am glad we both have cf. It would be weird if one of us didn't. More complicated".
 

Jane

Digital opinion leader
ALthough I am not a person with cf, I will share the words of my son who said, " I am glad we both have cf. It would be weird if one of us didn't. More complicated".
 

Jane

Digital opinion leader
ALthough I am not a person with cf, I will share the words of my son who said, " I am glad we both have cf. It would be weird if one of us didn't. More complicated".
 

Jane

Digital opinion leader
ALthough I am not a person with cf, I will share the words of my son who said, " I am glad we both have cf. It would be weird if one of us didn't. More complicated".
<br />
<br />
 

AnnaH

New member
<div class="FTQUOTE"><begin quote> Parents often talk from the perspective of themselves - THEY want to have the kid. THEY feel the need to have another. These parents, many, have never had a serious, lifelong medical condition. You can try to understand what it's like, but you never truly know what it's like to struggle for a breath, to adjust life/career goals because of an illness. Imagine coping with that knowing that your parents knew this was possible for you? </end quote></div>
Exactly. My parents got pregnant knowing that they were taking the one in four chance, and I really believe that they should have adopted or waited for PGD to exist(I'm 18). Not that I don't think my life is bad or anything- But CF effects my life in significant, negative ways, and it was AVOIDABLE.
With all the options available to prevent CF, to me it seems irresponsible, even uncaring to knowingly take the risk.
My parents did have other children(two, along with my twin brother and I) and I remember, as a 4 year old, being royally pissed that the kid could have CF. Even then, I thought it was too big of a risk.
There have been times, where quite honestly I've wondered why my parents had me. There have been times I have hated them for it, and never a time I have been happy they decided to risk it. My mother terminated a CF pregnancy, and I've never had a problem with that- I never saw it as something that was my fault, or because I was not good enough.

I can't speak to God, but I think that medical science has given you the option to have a baby just as beautiful as your first, but with fewer challenges. You have the chance to protect this kid from a fatal illness- If someone said, here's a shot to prevent Leukemia, you would do it in a second. I think people who don't do that are uncaring, and quite stupid.
Anyway, PM me if you want.
 

AnnaH

New member
<div class="FTQUOTE"><begin quote> Parents often talk from the perspective of themselves - THEY want to have the kid. THEY feel the need to have another. These parents, many, have never had a serious, lifelong medical condition. You can try to understand what it's like, but you never truly know what it's like to struggle for a breath, to adjust life/career goals because of an illness. Imagine coping with that knowing that your parents knew this was possible for you? </end quote></div>
Exactly. My parents got pregnant knowing that they were taking the one in four chance, and I really believe that they should have adopted or waited for PGD to exist(I'm 18). Not that I don't think my life is bad or anything- But CF effects my life in significant, negative ways, and it was AVOIDABLE.
With all the options available to prevent CF, to me it seems irresponsible, even uncaring to knowingly take the risk.
My parents did have other children(two, along with my twin brother and I) and I remember, as a 4 year old, being royally pissed that the kid could have CF. Even then, I thought it was too big of a risk.
There have been times, where quite honestly I've wondered why my parents had me. There have been times I have hated them for it, and never a time I have been happy they decided to risk it. My mother terminated a CF pregnancy, and I've never had a problem with that- I never saw it as something that was my fault, or because I was not good enough.

I can't speak to God, but I think that medical science has given you the option to have a baby just as beautiful as your first, but with fewer challenges. You have the chance to protect this kid from a fatal illness- If someone said, here's a shot to prevent Leukemia, you would do it in a second. I think people who don't do that are uncaring, and quite stupid.
Anyway, PM me if you want.
 

AnnaH

New member
<div class="FTQUOTE"><begin quote> Parents often talk from the perspective of themselves - THEY want to have the kid. THEY feel the need to have another. These parents, many, have never had a serious, lifelong medical condition. You can try to understand what it's like, but you never truly know what it's like to struggle for a breath, to adjust life/career goals because of an illness. Imagine coping with that knowing that your parents knew this was possible for you? </end quote></div>
Exactly. My parents got pregnant knowing that they were taking the one in four chance, and I really believe that they should have adopted or waited for PGD to exist(I'm 18). Not that I don't think my life is bad or anything- But CF effects my life in significant, negative ways, and it was AVOIDABLE.
With all the options available to prevent CF, to me it seems irresponsible, even uncaring to knowingly take the risk.
My parents did have other children(two, along with my twin brother and I) and I remember, as a 4 year old, being royally pissed that the kid could have CF. Even then, I thought it was too big of a risk.
There have been times, where quite honestly I've wondered why my parents had me. There have been times I have hated them for it, and never a time I have been happy they decided to risk it. My mother terminated a CF pregnancy, and I've never had a problem with that- I never saw it as something that was my fault, or because I was not good enough.

I can't speak to God, but I think that medical science has given you the option to have a baby just as beautiful as your first, but with fewer challenges. You have the chance to protect this kid from a fatal illness- If someone said, here's a shot to prevent Leukemia, you would do it in a second. I think people who don't do that are uncaring, and quite stupid.
Anyway, PM me if you want.
 

AnnaH

New member
<div class="FTQUOTE"><begin quote> Parents often talk from the perspective of themselves - THEY want to have the kid. THEY feel the need to have another. These parents, many, have never had a serious, lifelong medical condition. You can try to understand what it's like, but you never truly know what it's like to struggle for a breath, to adjust life/career goals because of an illness. Imagine coping with that knowing that your parents knew this was possible for you? </end quote>
Exactly. My parents got pregnant knowing that they were taking the one in four chance, and I really believe that they should have adopted or waited for PGD to exist(I'm 18). Not that I don't think my life is bad or anything- But CF effects my life in significant, negative ways, and it was AVOIDABLE.
With all the options available to prevent CF, to me it seems irresponsible, even uncaring to knowingly take the risk.
My parents did have other children(two, along with my twin brother and I) and I remember, as a 4 year old, being royally pissed that the kid could have CF. Even then, I thought it was too big of a risk.
There have been times, where quite honestly I've wondered why my parents had me. There have been times I have hated them for it, and never a time I have been happy they decided to risk it. My mother terminated a CF pregnancy, and I've never had a problem with that- I never saw it as something that was my fault, or because I was not good enough.

I can't speak to God, but I think that medical science has given you the option to have a baby just as beautiful as your first, but with fewer challenges. You have the chance to protect this kid from a fatal illness- If someone said, here's a shot to prevent Leukemia, you would do it in a second. I think people who don't do that are uncaring, and quite stupid.
Anyway, PM me if you want.
 

AnnaH

New member
<div class="FTQUOTE"><begin quote> Parents often talk from the perspective of themselves - THEY want to have the kid. THEY feel the need to have another. These parents, many, have never had a serious, lifelong medical condition. You can try to understand what it's like, but you never truly know what it's like to struggle for a breath, to adjust life/career goals because of an illness. Imagine coping with that knowing that your parents knew this was possible for you? </end quote>
<br />Exactly. My parents got pregnant knowing that they were taking the one in four chance, and I really believe that they should have adopted or waited for PGD to exist(I'm 18). Not that I don't think my life is bad or anything- But CF effects my life in significant, negative ways, and it was AVOIDABLE.
<br />With all the options available to prevent CF, to me it seems irresponsible, even uncaring to knowingly take the risk.
<br />My parents did have other children(two, along with my twin brother and I) and I remember, as a 4 year old, being royally pissed that the kid could have CF. Even then, I thought it was too big of a risk.
<br />There have been times, where quite honestly I've wondered why my parents had me. There have been times I have hated them for it, and never a time I have been happy they decided to risk it. My mother terminated a CF pregnancy, and I've never had a problem with that- I never saw it as something that was my fault, or because I was not good enough.
<br />
<br />I can't speak to God, but I think that medical science has given you the option to have a baby just as beautiful as your first, but with fewer challenges. You have the chance to protect this kid from a fatal illness- If someone said, here's a shot to prevent Leukemia, you would do it in a second. I think people who don't do that are uncaring, and quite stupid.
<br />Anyway, PM me if you want.
 

JennifersHope

New member
I would go with IVF.... I think.. I am not sure exactly what happens to the fertilized children that have the CF gene though....Is there a way to only fertilize non CF eggs? If there was without a doubt I would do that.. Having CF is a pain in the butt, not to take away from anyones life here or to put less value on it but until stem cell research come further, I would pick the for sure Non CF route
 

JennifersHope

New member
I would go with IVF.... I think.. I am not sure exactly what happens to the fertilized children that have the CF gene though....Is there a way to only fertilize non CF eggs? If there was without a doubt I would do that.. Having CF is a pain in the butt, not to take away from anyones life here or to put less value on it but until stem cell research come further, I would pick the for sure Non CF route
 

JennifersHope

New member
I would go with IVF.... I think.. I am not sure exactly what happens to the fertilized children that have the CF gene though....Is there a way to only fertilize non CF eggs? If there was without a doubt I would do that.. Having CF is a pain in the butt, not to take away from anyones life here or to put less value on it but until stem cell research come further, I would pick the for sure Non CF route
 

JennifersHope

New member
I would go with IVF.... I think.. I am not sure exactly what happens to the fertilized children that have the CF gene though....Is there a way to only fertilize non CF eggs? If there was without a doubt I would do that.. Having CF is a pain in the butt, not to take away from anyones life here or to put less value on it but until stem cell research come further, I would pick the for sure Non CF route
 

JennifersHope

New member
I would go with IVF.... I think.. I am not sure exactly what happens to the fertilized children that have the CF gene though....Is there a way to only fertilize non CF eggs? If there was without a doubt I would do that.. Having CF is a pain in the butt, not to take away from anyones life here or to put less value on it but until stem cell research come further, I would pick the for sure Non CF route
 

jaimers

Super Moderator
my parents didn't know they both carried the gene when they had me. and i honestly have never asked them if they purposefully decided to have my brother (4 years younger) or if it was an accident. thankfully my brother does not have cf. You will find many different opinions on this board about knowingly having more children after the initial cf diagnosis. and no one can tell what is going to be right for your family. As a CFer i can say that yes, having it sucks, but i've never been angry at my parents or resented them, but then again, i was the first kid and they didn't know about their own carrier status'.
I think amy/saveferris has a valid point about IVF/PGD. I am someone who believes in and follows Christ and I agree with her. I don't think that having IVF/PGD is necessarily being outside of God's will. If God doesn't want you to have more children you won't. whether you do IVF or anything else or not. I would most certainly pray about what to do and see where that leads you.

the financial aspect of CF is another good question to ask. Especially considering the way the economy is right now and how unstable job security is would your family be able to financially take care of 2 cf kids if one or both of you lost your job(s)?
I'm in the middle of job hunting and looking for a job period right now is miserable, let alone trying to find one with sufficient medical/health benefits to cover the high cost of cf care.

have you thought about looking into adoption? there are lots of children all over the world and in the US looking for a family to love them.
 

jaimers

Super Moderator
my parents didn't know they both carried the gene when they had me. and i honestly have never asked them if they purposefully decided to have my brother (4 years younger) or if it was an accident. thankfully my brother does not have cf. You will find many different opinions on this board about knowingly having more children after the initial cf diagnosis. and no one can tell what is going to be right for your family. As a CFer i can say that yes, having it sucks, but i've never been angry at my parents or resented them, but then again, i was the first kid and they didn't know about their own carrier status'.
I think amy/saveferris has a valid point about IVF/PGD. I am someone who believes in and follows Christ and I agree with her. I don't think that having IVF/PGD is necessarily being outside of God's will. If God doesn't want you to have more children you won't. whether you do IVF or anything else or not. I would most certainly pray about what to do and see where that leads you.

the financial aspect of CF is another good question to ask. Especially considering the way the economy is right now and how unstable job security is would your family be able to financially take care of 2 cf kids if one or both of you lost your job(s)?
I'm in the middle of job hunting and looking for a job period right now is miserable, let alone trying to find one with sufficient medical/health benefits to cover the high cost of cf care.

have you thought about looking into adoption? there are lots of children all over the world and in the US looking for a family to love them.
 

jaimers

Super Moderator
my parents didn't know they both carried the gene when they had me. and i honestly have never asked them if they purposefully decided to have my brother (4 years younger) or if it was an accident. thankfully my brother does not have cf. You will find many different opinions on this board about knowingly having more children after the initial cf diagnosis. and no one can tell what is going to be right for your family. As a CFer i can say that yes, having it sucks, but i've never been angry at my parents or resented them, but then again, i was the first kid and they didn't know about their own carrier status'.
I think amy/saveferris has a valid point about IVF/PGD. I am someone who believes in and follows Christ and I agree with her. I don't think that having IVF/PGD is necessarily being outside of God's will. If God doesn't want you to have more children you won't. whether you do IVF or anything else or not. I would most certainly pray about what to do and see where that leads you.

the financial aspect of CF is another good question to ask. Especially considering the way the economy is right now and how unstable job security is would your family be able to financially take care of 2 cf kids if one or both of you lost your job(s)?
I'm in the middle of job hunting and looking for a job period right now is miserable, let alone trying to find one with sufficient medical/health benefits to cover the high cost of cf care.

have you thought about looking into adoption? there are lots of children all over the world and in the US looking for a family to love them.
 

jaimers

Super Moderator
my parents didn't know they both carried the gene when they had me. and i honestly have never asked them if they purposefully decided to have my brother (4 years younger) or if it was an accident. thankfully my brother does not have cf. You will find many different opinions on this board about knowingly having more children after the initial cf diagnosis. and no one can tell what is going to be right for your family. As a CFer i can say that yes, having it sucks, but i've never been angry at my parents or resented them, but then again, i was the first kid and they didn't know about their own carrier status'.
I think amy/saveferris has a valid point about IVF/PGD. I am someone who believes in and follows Christ and I agree with her. I don't think that having IVF/PGD is necessarily being outside of God's will. If God doesn't want you to have more children you won't. whether you do IVF or anything else or not. I would most certainly pray about what to do and see where that leads you.

the financial aspect of CF is another good question to ask. Especially considering the way the economy is right now and how unstable job security is would your family be able to financially take care of 2 cf kids if one or both of you lost your job(s)?
I'm in the middle of job hunting and looking for a job period right now is miserable, let alone trying to find one with sufficient medical/health benefits to cover the high cost of cf care.

have you thought about looking into adoption? there are lots of children all over the world and in the US looking for a family to love them.
 

jaimers

Super Moderator
my parents didn't know they both carried the gene when they had me. and i honestly have never asked them if they purposefully decided to have my brother (4 years younger) or if it was an accident. thankfully my brother does not have cf. You will find many different opinions on this board about knowingly having more children after the initial cf diagnosis. and no one can tell what is going to be right for your family. As a CFer i can say that yes, having it sucks, but i've never been angry at my parents or resented them, but then again, i was the first kid and they didn't know about their own carrier status'.
<br /> I think amy/saveferris has a valid point about IVF/PGD. I am someone who believes in and follows Christ and I agree with her. I don't think that having IVF/PGD is necessarily being outside of God's will. If God doesn't want you to have more children you won't. whether you do IVF or anything else or not. I would most certainly pray about what to do and see where that leads you.
<br />
<br />the financial aspect of CF is another good question to ask. Especially considering the way the economy is right now and how unstable job security is would your family be able to financially take care of 2 cf kids if one or both of you lost your job(s)?
<br />I'm in the middle of job hunting and looking for a job period right now is miserable, let alone trying to find one with sufficient medical/health benefits to cover the high cost of cf care.
<br />
<br />have you thought about looking into adoption? there are lots of children all over the world and in the US looking for a family to love them.
 
Top