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Question on Cepacia
- Thread starter buggygurl321
- Start date
Point taken. If you're ready to accept the chance that you might get it, then go ahead.
Each one definately has to decide for themself.
The only things is, if you asked me at 18, or when I was still single, what would I rather....? My answer might have been different.
But now that I'm married and real life is beginning, there's no way that the risk is worth it to me.
For all of you that don't have it, particularly the younger ones that is, be careful. You may not care now, but you may also feel different when you get older, or get married and want kids of your own. One of the biggest complications in CF pregnancy is when the mother has Cepacia. And if it turns out that I can have kids naturally, I want to be there for them as long as possible. Literally every year makes a difference.
Christian
Each one definately has to decide for themself.
The only things is, if you asked me at 18, or when I was still single, what would I rather....? My answer might have been different.
But now that I'm married and real life is beginning, there's no way that the risk is worth it to me.
For all of you that don't have it, particularly the younger ones that is, be careful. You may not care now, but you may also feel different when you get older, or get married and want kids of your own. One of the biggest complications in CF pregnancy is when the mother has Cepacia. And if it turns out that I can have kids naturally, I want to be there for them as long as possible. Literally every year makes a difference.
Christian
Point taken. If you're ready to accept the chance that you might get it, then go ahead.
Each one definately has to decide for themself.
The only things is, if you asked me at 18, or when I was still single, what would I rather....? My answer might have been different.
But now that I'm married and real life is beginning, there's no way that the risk is worth it to me.
For all of you that don't have it, particularly the younger ones that is, be careful. You may not care now, but you may also feel different when you get older, or get married and want kids of your own. One of the biggest complications in CF pregnancy is when the mother has Cepacia. And if it turns out that I can have kids naturally, I want to be there for them as long as possible. Literally every year makes a difference.
Christian
Each one definately has to decide for themself.
The only things is, if you asked me at 18, or when I was still single, what would I rather....? My answer might have been different.
But now that I'm married and real life is beginning, there's no way that the risk is worth it to me.
For all of you that don't have it, particularly the younger ones that is, be careful. You may not care now, but you may also feel different when you get older, or get married and want kids of your own. One of the biggest complications in CF pregnancy is when the mother has Cepacia. And if it turns out that I can have kids naturally, I want to be there for them as long as possible. Literally every year makes a difference.
Christian
If there is a lack of substantial evidence to draw an intelligent conclusion about cepacia being spread from person to person, then why are cepacia patients banned from CFF activities (and given different clinic days, etc.)? But there is evidence. If we are wise enough to listen to those that have it, we will heed their warnings. Hopefully some lives have been saved by these protocols. Unfortunately, those that have cultured it, pay a price they don't deserve.
If there is a lack of substantial evidence to draw an intelligent conclusion about cepacia being spread from person to person, then why are cepacia patients banned from CFF activities (and given different clinic days, etc.)? But there is evidence. If we are wise enough to listen to those that have it, we will heed their warnings. Hopefully some lives have been saved by these protocols. Unfortunately, those that have cultured it, pay a price they don't deserve.
I stated concern under the "Children Confined to Hospital Rooms" topic in the family forum. I'd mentioned that I was always under the impression that because the CFF had policies regarding cepacia that there wasn't really a risk attending CFF events, until someone on another forum talked about having cepacia and participating in climb for a cure at the IDS tour. I was basically blasted for thinking that wasn't a good thing. To me it was an eye opener because I'd blindly believed that CF events were relatively safe because of the cepacia policy.
DS doesn't live in a bubble by any means, but I'm not going to take any risks with his health by having him be in close proximity to other cfers whether it be in a waiting room or at a CFF event -- for his own safety and the safety of others. DS has cultured pseudo and HIB and some other bugs in the past -- I don't want him spreading his bugs, if he has any and I sure as heck don't want him picking up any new ones.
Liza
DS doesn't live in a bubble by any means, but I'm not going to take any risks with his health by having him be in close proximity to other cfers whether it be in a waiting room or at a CFF event -- for his own safety and the safety of others. DS has cultured pseudo and HIB and some other bugs in the past -- I don't want him spreading his bugs, if he has any and I sure as heck don't want him picking up any new ones.
Liza
I stated concern under the "Children Confined to Hospital Rooms" topic in the family forum. I'd mentioned that I was always under the impression that because the CFF had policies regarding cepacia that there wasn't really a risk attending CFF events, until someone on another forum talked about having cepacia and participating in climb for a cure at the IDS tour. I was basically blasted for thinking that wasn't a good thing. To me it was an eye opener because I'd blindly believed that CF events were relatively safe because of the cepacia policy.
DS doesn't live in a bubble by any means, but I'm not going to take any risks with his health by having him be in close proximity to other cfers whether it be in a waiting room or at a CFF event -- for his own safety and the safety of others. DS has cultured pseudo and HIB and some other bugs in the past -- I don't want him spreading his bugs, if he has any and I sure as heck don't want him picking up any new ones.
Liza
DS doesn't live in a bubble by any means, but I'm not going to take any risks with his health by having him be in close proximity to other cfers whether it be in a waiting room or at a CFF event -- for his own safety and the safety of others. DS has cultured pseudo and HIB and some other bugs in the past -- I don't want him spreading his bugs, if he has any and I sure as heck don't want him picking up any new ones.
Liza
Scarlett81
New member
I would support that, Liza. If I was a mother, I'd do the same. To protect my kid, and others too.
I dont' agree that it's "paranoia and legal reason". I'm sure that almost any health related precaution can be traced back to "legal reasons" partly. You could then say that wiping one's arm with alochol before a blood test, wearing gloves, doctors washing hands before they see their next patient, ect.....
They're all done partly for legal reasons, but mostly for health sanitary reasons.
The bottom line is, evidence supports that confining B.c patients could help prevent the spread of it.
I dont' agree that it's "paranoia and legal reason". I'm sure that almost any health related precaution can be traced back to "legal reasons" partly. You could then say that wiping one's arm with alochol before a blood test, wearing gloves, doctors washing hands before they see their next patient, ect.....
They're all done partly for legal reasons, but mostly for health sanitary reasons.
The bottom line is, evidence supports that confining B.c patients could help prevent the spread of it.
Scarlett81
New member
I would support that, Liza. If I was a mother, I'd do the same. To protect my kid, and others too.
I dont' agree that it's "paranoia and legal reason". I'm sure that almost any health related precaution can be traced back to "legal reasons" partly. You could then say that wiping one's arm with alochol before a blood test, wearing gloves, doctors washing hands before they see their next patient, ect.....
They're all done partly for legal reasons, but mostly for health sanitary reasons.
The bottom line is, evidence supports that confining B.c patients could help prevent the spread of it.
I dont' agree that it's "paranoia and legal reason". I'm sure that almost any health related precaution can be traced back to "legal reasons" partly. You could then say that wiping one's arm with alochol before a blood test, wearing gloves, doctors washing hands before they see their next patient, ect.....
They're all done partly for legal reasons, but mostly for health sanitary reasons.
The bottom line is, evidence supports that confining B.c patients could help prevent the spread of it.
All I can say is thank the gods for this board!
Folks say that their alone with CF because their friends without CF don't get it
And they can't hang out with the very folks who DO get it (other CFers) because of fear of cross-contamination.
And even if some family members do get it, after a while (especially as an adult) you don't want to hang out with your parents all of the time.
What a blessing this board is!!!
-LisaV
Folks say that their alone with CF because their friends without CF don't get it
And they can't hang out with the very folks who DO get it (other CFers) because of fear of cross-contamination.
And even if some family members do get it, after a while (especially as an adult) you don't want to hang out with your parents all of the time.
What a blessing this board is!!!
-LisaV
All I can say is thank the gods for this board!
Folks say that their alone with CF because their friends without CF don't get it
And they can't hang out with the very folks who DO get it (other CFers) because of fear of cross-contamination.
And even if some family members do get it, after a while (especially as an adult) you don't want to hang out with your parents all of the time.
What a blessing this board is!!!
-LisaV
Folks say that their alone with CF because their friends without CF don't get it
And they can't hang out with the very folks who DO get it (other CFers) because of fear of cross-contamination.
And even if some family members do get it, after a while (especially as an adult) you don't want to hang out with your parents all of the time.
What a blessing this board is!!!
-LisaV
Emily65Roses
New member
<blockquote>Quote<br><hr>I'm not going to take any risks with his health by having him be in close proximity to other cfers whether it be in a waiting room or at a CFF event -- for his own safety and the safety of others.<hr></blockquote>
I understand why anyone would hold this opinion, and I don't blame you. Only thing I would request of any parent who chooses to take this route... make sure he has access to CF forums and CFers on AIM or by email when he wants them. If you can't talk to CFers in person, at least make sure online or phone chatting is in reach. Because, as LisaV said, socialization among ourselves is important for emotional wellbeing.
I understand why anyone would hold this opinion, and I don't blame you. Only thing I would request of any parent who chooses to take this route... make sure he has access to CF forums and CFers on AIM or by email when he wants them. If you can't talk to CFers in person, at least make sure online or phone chatting is in reach. Because, as LisaV said, socialization among ourselves is important for emotional wellbeing.
Emily65Roses
New member
<blockquote>Quote<br><hr>I'm not going to take any risks with his health by having him be in close proximity to other cfers whether it be in a waiting room or at a CFF event -- for his own safety and the safety of others.<hr></blockquote>
I understand why anyone would hold this opinion, and I don't blame you. Only thing I would request of any parent who chooses to take this route... make sure he has access to CF forums and CFers on AIM or by email when he wants them. If you can't talk to CFers in person, at least make sure online or phone chatting is in reach. Because, as LisaV said, socialization among ourselves is important for emotional wellbeing.
I understand why anyone would hold this opinion, and I don't blame you. Only thing I would request of any parent who chooses to take this route... make sure he has access to CF forums and CFers on AIM or by email when he wants them. If you can't talk to CFers in person, at least make sure online or phone chatting is in reach. Because, as LisaV said, socialization among ourselves is important for emotional wellbeing.