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Question on Cepacia
- Thread starter buggygurl321
- Start date
Jan may not have a PhD, but she has lived with someone who had cepacia and was successfully transplanted. Wonderful story about greg BTW! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I believe it's important to be made aware of the risks to cfers. Some have indicated that they've never been told that CFers shouldn't play together. Cepaciagal's comments on the big PFT machine really made me think, too about our clinic. DS is still to young to have that test, but I'm pretty sure they still use that type of machine.
Liza
I believe it's important to be made aware of the risks to cfers. Some have indicated that they've never been told that CFers shouldn't play together. Cepaciagal's comments on the big PFT machine really made me think, too about our clinic. DS is still to young to have that test, but I'm pretty sure they still use that type of machine.
Liza
Jan may not have a PhD, but she has lived with someone who had cepacia and was successfully transplanted. Wonderful story about greg BTW! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I believe it's important to be made aware of the risks to cfers. Some have indicated that they've never been told that CFers shouldn't play together. Cepaciagal's comments on the big PFT machine really made me think, too about our clinic. DS is still to young to have that test, but I'm pretty sure they still use that type of machine.
Liza
I believe it's important to be made aware of the risks to cfers. Some have indicated that they've never been told that CFers shouldn't play together. Cepaciagal's comments on the big PFT machine really made me think, too about our clinic. DS is still to young to have that test, but I'm pretty sure they still use that type of machine.
Liza
-No waiting areas, everyone gets a room immediately!
-Purell dispensers outside every room
-Hands-free automatic bathroom
-Specialists come directly to you in the exam room so you don't wander the hospital
-No waiting in x-ray or the ER
-gowns and gloves for everyone entering the room
-A custodian in clinic all day to wash rooms, seats, door knobs etc.
-portable lap-top pft machine
-When in-patient, each patient gets their own stethoscope
I'll keep thinking
-Purell dispensers outside every room
-Hands-free automatic bathroom
-Specialists come directly to you in the exam room so you don't wander the hospital
-No waiting in x-ray or the ER
-gowns and gloves for everyone entering the room
-A custodian in clinic all day to wash rooms, seats, door knobs etc.
-portable lap-top pft machine
-When in-patient, each patient gets their own stethoscope
I'll keep thinking
-No waiting areas, everyone gets a room immediately!
-Purell dispensers outside every room
-Hands-free automatic bathroom
-Specialists come directly to you in the exam room so you don't wander the hospital
-No waiting in x-ray or the ER
-gowns and gloves for everyone entering the room
-A custodian in clinic all day to wash rooms, seats, door knobs etc.
-portable lap-top pft machine
-When in-patient, each patient gets their own stethoscope
I'll keep thinking
-Purell dispensers outside every room
-Hands-free automatic bathroom
-Specialists come directly to you in the exam room so you don't wander the hospital
-No waiting in x-ray or the ER
-gowns and gloves for everyone entering the room
-A custodian in clinic all day to wash rooms, seats, door knobs etc.
-portable lap-top pft machine
-When in-patient, each patient gets their own stethoscope
I'll keep thinking
I don't agree with Cfers being insane and all that, but Cepacia is one bug you want to avoid if at all possible. Trust me on this. LIke someone's reference earlier said, as many as a third of patients have a rapid decline. Ry was 65% when he cultured it. 2.5 years later, dead. That's HUGE. I would tell people to be careful about it...
I don't agree with Cfers being insane and all that, but Cepacia is one bug you want to avoid if at all possible. Trust me on this. LIke someone's reference earlier said, as many as a third of patients have a rapid decline. Ry was 65% when he cultured it. 2.5 years later, dead. That's HUGE. I would tell people to be careful about it...
Meghan - please don't mistake my passion for mean spiritedness. If one person takes more precautions because of my husband's story then that is a blessing I can find among the dark cloud cepacia brought into my life, nearly taking my husband from me. No need to shout or curse - I'm not into arguing. Sorry if I offended you or anyone else. No, of course I don't have a phd, or an md for that matter. I did pretty much read everything on the web about cepacia, and talked to many cf'ers who cultured it, spending many hours trying to help save my husband's life or make it easier. I didn't mean to sound like a know it all.
take care all, jan
wife to Greg, 46 cf'er w/cepacia, tx'd 10-31-05 @ Methodist, Indianapolis
www.standinginthegap4greg.org
take care all, jan
wife to Greg, 46 cf'er w/cepacia, tx'd 10-31-05 @ Methodist, Indianapolis
www.standinginthegap4greg.org
Meghan - please don't mistake my passion for mean spiritedness. If one person takes more precautions because of my husband's story then that is a blessing I can find among the dark cloud cepacia brought into my life, nearly taking my husband from me. No need to shout or curse - I'm not into arguing. Sorry if I offended you or anyone else. No, of course I don't have a phd, or an md for that matter. I did pretty much read everything on the web about cepacia, and talked to many cf'ers who cultured it, spending many hours trying to help save my husband's life or make it easier. I didn't mean to sound like a know it all.
take care all, jan
wife to Greg, 46 cf'er w/cepacia, tx'd 10-31-05 @ Methodist, Indianapolis
www.standinginthegap4greg.org
take care all, jan
wife to Greg, 46 cf'er w/cepacia, tx'd 10-31-05 @ Methodist, Indianapolis
www.standinginthegap4greg.org
JennifersHope
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>lilMeggies</b></i><br>pretty sure there are precautions as I stated before so read the whole thread and don't skim! where's your PHD???? YEAH PRETTY SURE YOU DON'T HAVE ONE! So take your statitics and shove them!<hr></blockquote>
Meg, You are entitled to your own veiws as is Jan. Just because someone doesn't agree with you or has a different veiw doesn't mean you can be so rude. Really, you are coming across very immature and I know that you are not.
I don't care what you post, but I do care when I see people being rude to each other, very uncalled for.
Jennifer
Meg, You are entitled to your own veiws as is Jan. Just because someone doesn't agree with you or has a different veiw doesn't mean you can be so rude. Really, you are coming across very immature and I know that you are not.
I don't care what you post, but I do care when I see people being rude to each other, very uncalled for.
Jennifer
JennifersHope
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>lilMeggies</b></i><br>pretty sure there are precautions as I stated before so read the whole thread and don't skim! where's your PHD???? YEAH PRETTY SURE YOU DON'T HAVE ONE! So take your statitics and shove them!<hr></blockquote>
Meg, You are entitled to your own veiws as is Jan. Just because someone doesn't agree with you or has a different veiw doesn't mean you can be so rude. Really, you are coming across very immature and I know that you are not.
I don't care what you post, but I do care when I see people being rude to each other, very uncalled for.
Jennifer
Meg, You are entitled to your own veiws as is Jan. Just because someone doesn't agree with you or has a different veiw doesn't mean you can be so rude. Really, you are coming across very immature and I know that you are not.
I don't care what you post, but I do care when I see people being rude to each other, very uncalled for.
Jennifer
Sorry, but I have to speak on this one.
Bravo, Jennifer for your statement. I agree 100%. I didn't think that you were being a know-it-all, Jan.
If anyone, through their own experiences, has any input to offer or their story to tell, then I'm all ears.
Seriously, Meghan-I'm not trying to be rude at all when I say this, but are you having a bad day or is something going on?
Because like Jennifer said, your unneccesary comments were very immature and did not seem like you at all. (If someone had been posing as you, I would have believed it!)
Anyway, I also want to give props to Jan for your peace-seeking statement, and for your apology which I don't think you really needed to give. But, the point is that the gesture of it was appreciated.
Christian
Bravo, Jennifer for your statement. I agree 100%. I didn't think that you were being a know-it-all, Jan.
If anyone, through their own experiences, has any input to offer or their story to tell, then I'm all ears.
Seriously, Meghan-I'm not trying to be rude at all when I say this, but are you having a bad day or is something going on?
Because like Jennifer said, your unneccesary comments were very immature and did not seem like you at all. (If someone had been posing as you, I would have believed it!)
Anyway, I also want to give props to Jan for your peace-seeking statement, and for your apology which I don't think you really needed to give. But, the point is that the gesture of it was appreciated.
Christian
Sorry, but I have to speak on this one.
Bravo, Jennifer for your statement. I agree 100%. I didn't think that you were being a know-it-all, Jan.
If anyone, through their own experiences, has any input to offer or their story to tell, then I'm all ears.
Seriously, Meghan-I'm not trying to be rude at all when I say this, but are you having a bad day or is something going on?
Because like Jennifer said, your unneccesary comments were very immature and did not seem like you at all. (If someone had been posing as you, I would have believed it!)
Anyway, I also want to give props to Jan for your peace-seeking statement, and for your apology which I don't think you really needed to give. But, the point is that the gesture of it was appreciated.
Christian
Bravo, Jennifer for your statement. I agree 100%. I didn't think that you were being a know-it-all, Jan.
If anyone, through their own experiences, has any input to offer or their story to tell, then I'm all ears.
Seriously, Meghan-I'm not trying to be rude at all when I say this, but are you having a bad day or is something going on?
Because like Jennifer said, your unneccesary comments were very immature and did not seem like you at all. (If someone had been posing as you, I would have believed it!)
Anyway, I also want to give props to Jan for your peace-seeking statement, and for your apology which I don't think you really needed to give. But, the point is that the gesture of it was appreciated.
Christian
By the way, the reason I clicked on this thread in the first place-in case anyone here is actually interested in the cepacia thread-
is I found some interesting links specifically on eradicating B. Cepacia.
www.pubmedcentral.nih.gov/articlerender.fcgi?artid=89053
and
<a target=new class=ftalternatingbarlinklarge href="http://erj.ersjournals.com/cgi/content/abstract/26/2/305
">http://erj.ersjournals.com/cgi/content/abstract/26/2/305
</a>
Christian
is I found some interesting links specifically on eradicating B. Cepacia.
www.pubmedcentral.nih.gov/articlerender.fcgi?artid=89053
and
<a target=new class=ftalternatingbarlinklarge href="http://erj.ersjournals.com/cgi/content/abstract/26/2/305
">http://erj.ersjournals.com/cgi/content/abstract/26/2/305
</a>
Christian
By the way, the reason I clicked on this thread in the first place-in case anyone here is actually interested in the cepacia thread-
is I found some interesting links specifically on eradicating B. Cepacia.
www.pubmedcentral.nih.gov/articlerender.fcgi?artid=89053
and
<a target=new class=ftalternatingbarlinklarge href="http://erj.ersjournals.com/cgi/content/abstract/26/2/305
">http://erj.ersjournals.com/cgi/content/abstract/26/2/305
</a>
Christian
is I found some interesting links specifically on eradicating B. Cepacia.
www.pubmedcentral.nih.gov/articlerender.fcgi?artid=89053
and
<a target=new class=ftalternatingbarlinklarge href="http://erj.ersjournals.com/cgi/content/abstract/26/2/305
">http://erj.ersjournals.com/cgi/content/abstract/26/2/305
</a>
Christian
S
skh
Guest
You know this always worries me. My daughter has CF but so do two of her cousins. She is around them on holidays and other times throughout the year. How do you stay away from other CF'ers if they are your family?
Sue
Sue
S
skh
Guest
You know this always worries me. My daughter has CF but so do two of her cousins. She is around them on holidays and other times throughout the year. How do you stay away from other CF'ers if they are your family?
Sue
Sue
<blockquote>Quote<br><hr><i>Originally posted by: <b>skh</b></i><br>You know this always worries me. My daughter has CF but so do two of her cousins. She is around them on holidays and other times throughout the year. How do you stay away from other CF'ers if they are your family?
Sue<hr></blockquote>
You don't have to live in a bubble from other CF patients to keep your own bugs. You can socialize with people. The problem comes from coughing/sneezeing on/close to the other CF patient, and all of them not constantly washing their hands. If they were to keep their contact to a minimum as in ok to hug but not share glasses and obvious things like that, they should be fine to be in the same room and be social as a family. Expecting a cystic with cystic family members to totally distance themself from the others isn't realistic, and isn't right. I've hung out with a ton of CF patients all growing up, and aside from these last 2 hospital bugs I picked up, it took me a while to get regular pseudo. You can get regular pseudo or cepacia in many other ways besides being around CF patients. I've known many CF patients who played the "omg get away from me" game regarding other cystics, and all of them got pseudo anyways, and some got cepacia, most are dead. Oddly enough, the social CF patients lives the longest. There is no one rule regarding transmission, aside from common sense approaches like washing hands, not coughing/sneezing on others, not sharing drinks/utensils, etc.
Sue<hr></blockquote>
You don't have to live in a bubble from other CF patients to keep your own bugs. You can socialize with people. The problem comes from coughing/sneezeing on/close to the other CF patient, and all of them not constantly washing their hands. If they were to keep their contact to a minimum as in ok to hug but not share glasses and obvious things like that, they should be fine to be in the same room and be social as a family. Expecting a cystic with cystic family members to totally distance themself from the others isn't realistic, and isn't right. I've hung out with a ton of CF patients all growing up, and aside from these last 2 hospital bugs I picked up, it took me a while to get regular pseudo. You can get regular pseudo or cepacia in many other ways besides being around CF patients. I've known many CF patients who played the "omg get away from me" game regarding other cystics, and all of them got pseudo anyways, and some got cepacia, most are dead. Oddly enough, the social CF patients lives the longest. There is no one rule regarding transmission, aside from common sense approaches like washing hands, not coughing/sneezing on others, not sharing drinks/utensils, etc.
<blockquote>Quote<br><hr><i>Originally posted by: <b>skh</b></i><br>You know this always worries me. My daughter has CF but so do two of her cousins. She is around them on holidays and other times throughout the year. How do you stay away from other CF'ers if they are your family?
Sue<hr></blockquote>
You don't have to live in a bubble from other CF patients to keep your own bugs. You can socialize with people. The problem comes from coughing/sneezeing on/close to the other CF patient, and all of them not constantly washing their hands. If they were to keep their contact to a minimum as in ok to hug but not share glasses and obvious things like that, they should be fine to be in the same room and be social as a family. Expecting a cystic with cystic family members to totally distance themself from the others isn't realistic, and isn't right. I've hung out with a ton of CF patients all growing up, and aside from these last 2 hospital bugs I picked up, it took me a while to get regular pseudo. You can get regular pseudo or cepacia in many other ways besides being around CF patients. I've known many CF patients who played the "omg get away from me" game regarding other cystics, and all of them got pseudo anyways, and some got cepacia, most are dead. Oddly enough, the social CF patients lives the longest. There is no one rule regarding transmission, aside from common sense approaches like washing hands, not coughing/sneezing on others, not sharing drinks/utensils, etc.
Sue<hr></blockquote>
You don't have to live in a bubble from other CF patients to keep your own bugs. You can socialize with people. The problem comes from coughing/sneezeing on/close to the other CF patient, and all of them not constantly washing their hands. If they were to keep their contact to a minimum as in ok to hug but not share glasses and obvious things like that, they should be fine to be in the same room and be social as a family. Expecting a cystic with cystic family members to totally distance themself from the others isn't realistic, and isn't right. I've hung out with a ton of CF patients all growing up, and aside from these last 2 hospital bugs I picked up, it took me a while to get regular pseudo. You can get regular pseudo or cepacia in many other ways besides being around CF patients. I've known many CF patients who played the "omg get away from me" game regarding other cystics, and all of them got pseudo anyways, and some got cepacia, most are dead. Oddly enough, the social CF patients lives the longest. There is no one rule regarding transmission, aside from common sense approaches like washing hands, not coughing/sneezing on others, not sharing drinks/utensils, etc.