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Stats on People with CF and Carriers having Children with CF?
- Thread starter chantelfox
- Start date
Holy cow here folks. I'm going to throw in my opinion here, just to throw another rock at the hornets nest.
1) We can all agree that having CF freakin' sucks. Those people who HAVE CF make the best of it, because it's the hand they've been dealt. They have no choice, it's already done.
2) We can all agree on the statistics, after all they are based in concrete science. 50% chance of a CF child for a carrier and a CFer, and 25% chance for two carriers.
My view is that if a couple, knowing the risks (which are KNOWN - this is important, the risks of other diseases are as low as in the general population, and a statistical drop in the ocean), decides to have a child.... they are deciding to have a child with CF. Hope or *insert religion here* or whatever, is not relevant. You are playing with genetics. Guess what, genetics always wins. When you take the risk, knowing how high it is, you are saying that it is OK if you bring another child into the world with CF. I'm not cool with that.
Blah blah blah, Jeremy wouldn't have been born, blah blah. He was born in 1977, long before the genes were discovered. To illustrate the lack of knowledge on the subject at the time: even though his older brother had been diagnosed with CF, when Jeremy started to get sick as an infant... they tested him for eight million other things before thinking "Hey he might have what his brother does *big light comes on*" So yes, I am saying that if his parents were operating under today's set of knowledge, they should NOT have had him. Since he would have never existed, I wouldn't have known him. You can't miss someone who never exists.
1) We can all agree that having CF freakin' sucks. Those people who HAVE CF make the best of it, because it's the hand they've been dealt. They have no choice, it's already done.
2) We can all agree on the statistics, after all they are based in concrete science. 50% chance of a CF child for a carrier and a CFer, and 25% chance for two carriers.
My view is that if a couple, knowing the risks (which are KNOWN - this is important, the risks of other diseases are as low as in the general population, and a statistical drop in the ocean), decides to have a child.... they are deciding to have a child with CF. Hope or *insert religion here* or whatever, is not relevant. You are playing with genetics. Guess what, genetics always wins. When you take the risk, knowing how high it is, you are saying that it is OK if you bring another child into the world with CF. I'm not cool with that.
Blah blah blah, Jeremy wouldn't have been born, blah blah. He was born in 1977, long before the genes were discovered. To illustrate the lack of knowledge on the subject at the time: even though his older brother had been diagnosed with CF, when Jeremy started to get sick as an infant... they tested him for eight million other things before thinking "Hey he might have what his brother does *big light comes on*" So yes, I am saying that if his parents were operating under today's set of knowledge, they should NOT have had him. Since he would have never existed, I wouldn't have known him. You can't miss someone who never exists.
CFHockeyMom
New member
Amy,
Although I agree with your sentiment, in general (i.e. yes, Allie has a huge amount of insight into this area). I don't agree that the parent of a child necessarily has any less insight.
<div class="FTQUOTE"><begin quote>Allie speaks from a much more macro view of the disease. She's seen the spectrum of what the disease has to offer. Something that parents of a 1 or 2 or 10 year old haven't come close to seeing. </end quote></div>
Not everyone with CF remains healthy until their 20's or 30's. For instance, Sean has cultured Cepacia and his last PFT was 39%. I also have a friend that burried her 10 year old CFer two years ago another friend that burried her 20 year old CFer - 2 years after his double TX, and a family aqcuaitance that burried their CFer at 8 weeks old.
Is it easier for parents of a healthier CF child to be positive? No doubt. They haven't seen much of the dark side yet, but as we know, ignorance is bliss. No matter how we try nothing will get through to them like experience. We can only hope that they will learn from those that have seen the darker/darkest side.
Cheers.
Although I agree with your sentiment, in general (i.e. yes, Allie has a huge amount of insight into this area). I don't agree that the parent of a child necessarily has any less insight.
<div class="FTQUOTE"><begin quote>Allie speaks from a much more macro view of the disease. She's seen the spectrum of what the disease has to offer. Something that parents of a 1 or 2 or 10 year old haven't come close to seeing. </end quote></div>
Not everyone with CF remains healthy until their 20's or 30's. For instance, Sean has cultured Cepacia and his last PFT was 39%. I also have a friend that burried her 10 year old CFer two years ago another friend that burried her 20 year old CFer - 2 years after his double TX, and a family aqcuaitance that burried their CFer at 8 weeks old.
Is it easier for parents of a healthier CF child to be positive? No doubt. They haven't seen much of the dark side yet, but as we know, ignorance is bliss. No matter how we try nothing will get through to them like experience. We can only hope that they will learn from those that have seen the darker/darkest side.
Cheers.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i> ignorance is
bliss.</end quote></div><br>
<br>
<br>
I can't tell you how much this applies to me, I have never had any
real problem with my CF, I had walking pnemaonia when I 18 and it
was the oly time I've been hospitalized, until last month, my
pft's were way down. Then I found this site and reading some
of the blogs and situations other posters are going through, it
really hit me how lucky I've been. It's given me a good kick
in the rear to be more proactive about my health and staying ahead
of this instead of reacting to things. <br>
<br>
Thank you all.
bliss.</end quote></div><br>
<br>
<br>
I can't tell you how much this applies to me, I have never had any
real problem with my CF, I had walking pnemaonia when I 18 and it
was the oly time I've been hospitalized, until last month, my
pft's were way down. Then I found this site and reading some
of the blogs and situations other posters are going through, it
really hit me how lucky I've been. It's given me a good kick
in the rear to be more proactive about my health and staying ahead
of this instead of reacting to things. <br>
<br>
Thank you all.
<div class="FTQUOTE"><begin quote>I Didnt read all the posts and now that I did I have to say to Allie you suck if that makes me a bitch so be it I llove Damien and if I knew TOday He would have cf I would still do it. Have you always been such a high and Mighty whitch or did this just come about? sorry you are greiving but thats no excuse to be such a narcassist. I truely hope you find some peace in your heart. You are no better than anyone nor are your opinions, feelings,or thoughts miss maam. Try to spread some love. </end quote></div>
Well, first I had to recover from my English training to read this without a red pen in my hand. F for grammar and spelling, but you're pissed, so, I'll forgive it.
Babe, I never said I was better than anyone else. What I DO have that you don't, is a really good idea of just how evil CF can be. Feeding Damien enzymes and giving him CPT doesn't mean you have ANY idea of what it really is. Talk to me when he's coughing up blood, on oxygen all the time and STILL breathless, unable to walk across the room and in constant pain. THEN talk to me about CF not being so bad.
I hope when Damien is dying, you look back on this and realize "hmm, she may have had a point." If that makes me a bitch, so be it.
Well, first I had to recover from my English training to read this without a red pen in my hand. F for grammar and spelling, but you're pissed, so, I'll forgive it.
Babe, I never said I was better than anyone else. What I DO have that you don't, is a really good idea of just how evil CF can be. Feeding Damien enzymes and giving him CPT doesn't mean you have ANY idea of what it really is. Talk to me when he's coughing up blood, on oxygen all the time and STILL breathless, unable to walk across the room and in constant pain. THEN talk to me about CF not being so bad.
I hope when Damien is dying, you look back on this and realize "hmm, she may have had a point." If that makes me a bitch, so be it.
I hope when Damien is dying, you look back on this and realize
"hmm, she may have had a point."<br>
<br>
<br>
oooh, that's a terrible thing to say. Reading that was like getting
a kick to the stomach. People with CF and parents of CF children
have so much to deal with, do they really need to come to a
board where people say such horrible things ?
"hmm, she may have had a point."<br>
<br>
<br>
oooh, that's a terrible thing to say. Reading that was like getting
a kick to the stomach. People with CF and parents of CF children
have so much to deal with, do they really need to come to a
board where people say such horrible things ?
This is definitely insane. And seems like it will probably just keep growing, because people have sensitive issues that they respond to even when they show up on a tangent. Only additional thought I have is that it might help conquer some of the communication issues (definitely influenced by the medium) if everyone takes a second to think about whatever issue is bothering them in this entire fracas and tries looking at it from another perspective. For example, someone who has lost a husband to CF will have a different view than someone whose toddler is newly diagnosed with CF. I think taking a moment to do this will not eliminate the debate, which would not be a positive thing, but could help to keep everyone respecting each other so that the conversation can be about the issues and less people's defensive hangups.
Try smiling while replying to this topic and perhaps it will help to keep people communicating rather than hurting.
Final thing I want to make clear is that I think everyone is entitled not only to their own opinion, but to continue to stand by it and defend it even if it falls under attack and is not popular. In fact, not only are you entitled, I'd say it's your responsibility. Only thing that I'd label as "insane" is losing control of yourself and your argument and attacking others nonsensically... Doesn't help them, doesn't help you.
Try smiling while replying to this topic and perhaps it will help to keep people communicating rather than hurting.
Final thing I want to make clear is that I think everyone is entitled not only to their own opinion, but to continue to stand by it and defend it even if it falls under attack and is not popular. In fact, not only are you entitled, I'd say it's your responsibility. Only thing that I'd label as "insane" is losing control of yourself and your argument and attacking others nonsensically... Doesn't help them, doesn't help you.
thelizardqueen
New member
Isn't this just lovely how we've gone from someone asking about stats on a CFer having a CF baby, to genetics, to I'm better and I suffer more then you? This thread is pathetic.
She had an entire post devoted to attacking me, while not logically refuting my point *shrug*. And she will have a totally different outlook when it gets to that point. If she's going to unleash on me, why should I be expected do exhibit self restraint with her?
<div class="FTQUOTE"><begin quote>Allie well said. You have probably just freaked out all the parents, but well said. They need to know. </end quote></div>
Thanks, it's good to know someone out there gets what I'm saying.
<div class="FTQUOTE"><begin quote>Allie well said. You have probably just freaked out all the parents, but well said. They need to know. </end quote></div>
Thanks, it's good to know someone out there gets what I'm saying.
This is going to get locked any minute, thus putting an end to it but I wanted to get this is in...
<div class="FTQUOTE"><begin quote>Well, first I had to recover from my English training to read this without a red pen in my hand. F for grammar and spelling, but you're pissed, so, I'll forgive it. </end quote></div>
Nope, her spelling and grammar are always poor.
<div class="FTQUOTE"><begin quote>Feeding Damien enzymes and giving him CPT doesn't mean you have ANY idea of what it really is.</end quote></div>
You forgot, putting OO on his heel. Now that is really something!
Allie's words were harsh but she was just re-iterating that with experience comes wisdom.
<div class="FTQUOTE"><begin quote>Well, first I had to recover from my English training to read this without a red pen in my hand. F for grammar and spelling, but you're pissed, so, I'll forgive it. </end quote></div>
Nope, her spelling and grammar are always poor.
<div class="FTQUOTE"><begin quote>Feeding Damien enzymes and giving him CPT doesn't mean you have ANY idea of what it really is.</end quote></div>
You forgot, putting OO on his heel. Now that is really something!
Allie's words were harsh but she was just re-iterating that with experience comes wisdom.
another perspective...
I am one of those parents whose child is relatively healthy. My daughter was diagnosed at age 1. My husband and I had no family history of CF and did not have genetic testing prior to getting pregnant. We have made the decision not to have any other children. I can't tell you how many times my biological clock has ticked over the last ten years.
My daughter is happy and thriving. She is very active, she plays soccer and dances. We are disciplined in our daily preventative care and aggressive with treatments when she is sick. This disease is a huge part of our lives, but it does not own it. I don't know what the future holds, but my goal is to help my daughter be as healthy and happy as she can be... I do not want this disease to define her. Sorry...I got off subject...but my point was...just to say...even though my daughter's CF is mild at this point...I am always aware of CF reality.
I am one of those parents whose child is relatively healthy. My daughter was diagnosed at age 1. My husband and I had no family history of CF and did not have genetic testing prior to getting pregnant. We have made the decision not to have any other children. I can't tell you how many times my biological clock has ticked over the last ten years.
My daughter is happy and thriving. She is very active, she plays soccer and dances. We are disciplined in our daily preventative care and aggressive with treatments when she is sick. This disease is a huge part of our lives, but it does not own it. I don't know what the future holds, but my goal is to help my daughter be as healthy and happy as she can be... I do not want this disease to define her. Sorry...I got off subject...but my point was...just to say...even though my daughter's CF is mild at this point...I am always aware of CF reality.
Coming to Allie's defense here. I don't think what she said is awful or cruel or meant to be that at all. The thing is, that some of us don't stop to think about or realize... is that she's been there with her husband, the love of her life. If you think that gives her a tainted perspective on things, then so be it. That is your opinion and you are entitled. But I know me PERSONALLY, that Allie has helped me to understand a LOT of things I was closed off to before regarding the realities of CF. Like if I don't think about them, they must not exist. But that's not true and any adult with common sense knows that.
There's no 100% guarantee that My husband will die before me, I mean, something could happen to me tomorrow. But the odds are that he will. And Allie has been such a support for me, talking me through what she went through, her emotions, her feelings, what occured in those last few months, days and hours they were together. As hard as it is, I'd rather be prepared and open than in denial and struggle even more.
CF sucks, I don't disagree with that for one minute. However, I DO think it made my husband the person he is today and he thinks so as well. That doens't mean he LIKES his CF, that doesn't mean he would ever be ok with having a child with CF but those are just his PERSONAL views. Other see things differently and THAT IS OK!!!!!
But please don't bash Allie because she wants to share some honest views about "the end". I'm not so sure this was exactly the appropriate topic in which to do it because the original question was pretty cut and dry, but since the whole topic got off on a tangent, it makes sense that she replied.
dcgal, you say that people with Cf and parents of children with CF have so much to deal with, do they really need to come to a board where people say such horrible things? WHAT ABOUT THE BOYFRIENDS AND GIRLFRIENDS OF CFERS, WHAT ABOUT THE WIFES AND HUSBANDS WHO HAVE DEVOTED THEIR LIVES TO THE CFERS WELLBEING. WHAT ABOUT US? WE DON'T GET A SAY IN THIS? No offense but your statement is pretty close minded. Allie wasn't saying what she did to be rude, she didn't wish anything bad on Damien. But she was honest about her thoughts that when the time comes for Damien-because it will- that his mother might realize what Allie was saying.
Ok... I'm done
There's no 100% guarantee that My husband will die before me, I mean, something could happen to me tomorrow. But the odds are that he will. And Allie has been such a support for me, talking me through what she went through, her emotions, her feelings, what occured in those last few months, days and hours they were together. As hard as it is, I'd rather be prepared and open than in denial and struggle even more.
CF sucks, I don't disagree with that for one minute. However, I DO think it made my husband the person he is today and he thinks so as well. That doens't mean he LIKES his CF, that doesn't mean he would ever be ok with having a child with CF but those are just his PERSONAL views. Other see things differently and THAT IS OK!!!!!
But please don't bash Allie because she wants to share some honest views about "the end". I'm not so sure this was exactly the appropriate topic in which to do it because the original question was pretty cut and dry, but since the whole topic got off on a tangent, it makes sense that she replied.
dcgal, you say that people with Cf and parents of children with CF have so much to deal with, do they really need to come to a board where people say such horrible things? WHAT ABOUT THE BOYFRIENDS AND GIRLFRIENDS OF CFERS, WHAT ABOUT THE WIFES AND HUSBANDS WHO HAVE DEVOTED THEIR LIVES TO THE CFERS WELLBEING. WHAT ABOUT US? WE DON'T GET A SAY IN THIS? No offense but your statement is pretty close minded. Allie wasn't saying what she did to be rude, she didn't wish anything bad on Damien. But she was honest about her thoughts that when the time comes for Damien-because it will- that his mother might realize what Allie was saying.
Ok... I'm done
<div class="FTQUOTE"><begin quote>WHAT ABOUT THE BOYFRIENDS AND GIRLFRIENDS OF CFERS, WHAT ABOUT THE WIFES AND HUSBANDS WHO HAVE DEVOTED THEIR LIVES TO THE CFERS WELLBEING. WHAT ABOUT US? WE DON'T GET A SAY IN THIS?</end quote></div>
Psh, we don't go through anything. I wasn't the one who stayed up with him when he felt like crap, I wasn't the one who gave him CPT every night for 9 years, I wasn't the one who shared his hospital bed, I wasn't the one who held him while he was dying. Oh wait...
<div class="FTQUOTE"><begin quote>Allie wasn't saying what she did to be rude, she didn't wish anything bad on Damien. But she was honest about her thoughts that when the time comes for Damien-because it will- that his mother might realize what Allie was saying.</end quote></div>
Thank you, thank you, thank you. This is exactly right. I don't wish bad things on him, but the end will come, and things get much clearer in those moments. That was the moment Hannah said she was SO GLAD she stopped having children.
At Lilith's request, I've attached yummy lung photos, I attached them so you have the option, I actually am a decent person. Edit: Hah, I guess they show up anyhow, but not in full size.
Psh, we don't go through anything. I wasn't the one who stayed up with him when he felt like crap, I wasn't the one who gave him CPT every night for 9 years, I wasn't the one who shared his hospital bed, I wasn't the one who held him while he was dying. Oh wait...
<div class="FTQUOTE"><begin quote>Allie wasn't saying what she did to be rude, she didn't wish anything bad on Damien. But she was honest about her thoughts that when the time comes for Damien-because it will- that his mother might realize what Allie was saying.</end quote></div>
Thank you, thank you, thank you. This is exactly right. I don't wish bad things on him, but the end will come, and things get much clearer in those moments. That was the moment Hannah said she was SO GLAD she stopped having children.
At Lilith's request, I've attached yummy lung photos, I attached them so you have the option, I actually am a decent person. Edit: Hah, I guess they show up anyhow, but not in full size.
CFHockeyMom
New member
I agree, Julie.
This is a CF forum and because of the nature of the disease (fatal), there is going to be some ugliness. A lot of parents aren't ready for that and, as has been said before, may be more comfy in the families section. My husband is one of those. He is honest with Sean about CF but he doesn't seek out the long term realities in specific terms. I prefer to know what's ahead. The more I know the more I feel I can prepare. Of course, you can never really plan for this type of thing but in some way it helps.
We belonged to a CF parents support group and it was very difficult to maintain because of the varying ages of the CF kids. The older kids (and their parents) were obviously at a different place than the newbies and often the newbies didn't want to know the dark side. Many of the parents with older kids were shushed when it came to sensitive topics.
This doesn't have to be an us versus them thing. If you prefer to wait until you have to know the darker details then that's fine just don't crucify the rest of us for speaking honestly.
Editied part:
One more thing... I love the fact that there are BF/GF/Spouses here. I want to know that side too. I hope someday Sean finds his Allie or Julie and I want to know how CF will affect her so we can be closer. That relationship, although in the much distnant future, is important to me. There will come a day when Sean's Allie or Julie is one more person I'll have to connect me with Sean's memory.
This is a CF forum and because of the nature of the disease (fatal), there is going to be some ugliness. A lot of parents aren't ready for that and, as has been said before, may be more comfy in the families section. My husband is one of those. He is honest with Sean about CF but he doesn't seek out the long term realities in specific terms. I prefer to know what's ahead. The more I know the more I feel I can prepare. Of course, you can never really plan for this type of thing but in some way it helps.
We belonged to a CF parents support group and it was very difficult to maintain because of the varying ages of the CF kids. The older kids (and their parents) were obviously at a different place than the newbies and often the newbies didn't want to know the dark side. Many of the parents with older kids were shushed when it came to sensitive topics.
This doesn't have to be an us versus them thing. If you prefer to wait until you have to know the darker details then that's fine just don't crucify the rest of us for speaking honestly.
Editied part:
One more thing... I love the fact that there are BF/GF/Spouses here. I want to know that side too. I hope someday Sean finds his Allie or Julie and I want to know how CF will affect her so we can be closer. That relationship, although in the much distnant future, is important to me. There will come a day when Sean's Allie or Julie is one more person I'll have to connect me with Sean's memory.
I just want to say I think it's great that y'all have a place to talk about such morbid things and consider this therapy b/c where else could you release all this negativity and not have to pay big time. Dig in! I think the majority of you are handling this really well and I love your varying views / perspectives. It's so nice to see Allie engaged on the site again.
'dcgal, you say that people with Cf and parents of children with CF
have so much to deal with, do they really need to come to a board
where people say such horrible things? WHAT ABOUT THE BOYFRIENDS
AND GIRLFRIENDS OF CFERS, WHAT ABOUT THE WIFES AND HUSBANDS WHO
HAVE DEVOTED THEIR LIVES TO THE CFERS WELLBEING. WHAT ABOUT US? WE
DON'T GET A SAY IN THIS? No offense but your statement is pretty
close minded'<br>
<br>
Hi Julie- sorry I didn't take the time to list all the types of
people that are affected by CF. Just a FYI- I am a widow of a CFer.
My husband, age 32 died in 2002. I devoted my life to my
husband, I took care of him and held him in his last moments.
So, I don't think I am close minded. I am still grieving and
working really hard to be the best Mom I can be to our son. <br>
The reason I commented on Allie's statement was b/c as a Mom it was
hard to read those words. My son doesn't have CF but reading
that was shocking. I didn't take it as Allie wishing bad on the
woman's son- I just thought it was a little harsh thats all.. And
remember- I am a CF widow, so I am aware of what happens in the end
stages.
have so much to deal with, do they really need to come to a board
where people say such horrible things? WHAT ABOUT THE BOYFRIENDS
AND GIRLFRIENDS OF CFERS, WHAT ABOUT THE WIFES AND HUSBANDS WHO
HAVE DEVOTED THEIR LIVES TO THE CFERS WELLBEING. WHAT ABOUT US? WE
DON'T GET A SAY IN THIS? No offense but your statement is pretty
close minded'<br>
<br>
Hi Julie- sorry I didn't take the time to list all the types of
people that are affected by CF. Just a FYI- I am a widow of a CFer.
My husband, age 32 died in 2002. I devoted my life to my
husband, I took care of him and held him in his last moments.
So, I don't think I am close minded. I am still grieving and
working really hard to be the best Mom I can be to our son. <br>
The reason I commented on Allie's statement was b/c as a Mom it was
hard to read those words. My son doesn't have CF but reading
that was shocking. I didn't take it as Allie wishing bad on the
woman's son- I just thought it was a little harsh thats all.. And
remember- I am a CF widow, so I am aware of what happens in the end
stages.