live2breath
New member
OHHHH ok ya I am all caught up now my friend had that but they called it something else they kept using the medical term but they found ways to beat it now but still should be careful
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Ideas for venus
- Thread starter live2breath
- Start date
live2breath
New member
OHHHH ok ya I am all caught up now my friend had that but they called it something else they kept using the medical term but they found ways to beat it now but still should be careful
Incomudrox
New member
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>live2breath</strong></em> OHHHH ok ya I am all caught up now my friend had that but they called it something else they kept using the medical term but they found ways to beat it now but still should be careful</end quote>
I regret to inform you that this could not be further from the truth. I think you maybe confusing it with something else. Burkholderia Cepacia is extremely hard to kill, even Iodine has a hard time wiping it out. For fear of you being lynched by the members on here with B Cepacia for such a comment you may want to educate yourself more on the topic. They have made some minor improvements in treatment for it but once it colonizes the lungs it is not coming out. No dice.
Also if you manage to contract it, this really limits the number of centers that are willing to do a transplant. Most do not see the point in it as your body is colonized with a theoritically impossible bacteria to oust. There are only about 3-4 in the U.S. that will accept tx with B Cepacia UPMC in Pittsburgh is one of them.
I regret to inform you that this could not be further from the truth. I think you maybe confusing it with something else. Burkholderia Cepacia is extremely hard to kill, even Iodine has a hard time wiping it out. For fear of you being lynched by the members on here with B Cepacia for such a comment you may want to educate yourself more on the topic. They have made some minor improvements in treatment for it but once it colonizes the lungs it is not coming out. No dice.
Also if you manage to contract it, this really limits the number of centers that are willing to do a transplant. Most do not see the point in it as your body is colonized with a theoritically impossible bacteria to oust. There are only about 3-4 in the U.S. that will accept tx with B Cepacia UPMC in Pittsburgh is one of them.
Incomudrox
New member
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>live2breath</strong></em> OHHHH ok ya I am all caught up now my friend had that but they called it something else they kept using the medical term but they found ways to beat it now but still should be careful</end quote>
I regret to inform you that this could not be further from the truth. I think you maybe confusing it with something else. Burkholderia Cepacia is extremely hard to kill, even Iodine has a hard time wiping it out. For fear of you being lynched by the members on here with B Cepacia for such a comment you may want to educate yourself more on the topic. They have made some minor improvements in treatment for it but once it colonizes the lungs it is not coming out. No dice.
Also if you manage to contract it, this really limits the number of centers that are willing to do a transplant. Most do not see the point in it as your body is colonized with a theoritically impossible bacteria to oust. There are only about 3-4 in the U.S. that will accept tx with B Cepacia UPMC in Pittsburgh is one of them.
I regret to inform you that this could not be further from the truth. I think you maybe confusing it with something else. Burkholderia Cepacia is extremely hard to kill, even Iodine has a hard time wiping it out. For fear of you being lynched by the members on here with B Cepacia for such a comment you may want to educate yourself more on the topic. They have made some minor improvements in treatment for it but once it colonizes the lungs it is not coming out. No dice.
Also if you manage to contract it, this really limits the number of centers that are willing to do a transplant. Most do not see the point in it as your body is colonized with a theoritically impossible bacteria to oust. There are only about 3-4 in the U.S. that will accept tx with B Cepacia UPMC in Pittsburgh is one of them.
live2breath
New member
I am almost sure that the new inhaled antibiotic cayston is proven to help it that was one of the big selling point when they wanted to test it and it got approved by the FDA so quick
live2breath
New member
I am almost sure that the new inhaled antibiotic cayston is proven to help it that was one of the big selling point when they wanted to test it and it got approved by the FDA so quick
Cayston is for Pseudomonas Aeruginosa.
I agree that you can't let CF dictate your life, but it isn't worth the risk to attend a benefit with other people with CF. Instead I can do something else fun (like go to a bar if that's what I want to do) and donate some money to the CF foundation. And then I have a lot lower risk of catching a nasty bug. Not going to get togethers with other CFers doesn't really impact my life. When people say, "You can't let CF rule your life" it's usually for bigger deal things like deciding to go to college, not deciding to spend a few hours at a benefit.
I agree that you can't let CF dictate your life, but it isn't worth the risk to attend a benefit with other people with CF. Instead I can do something else fun (like go to a bar if that's what I want to do) and donate some money to the CF foundation. And then I have a lot lower risk of catching a nasty bug. Not going to get togethers with other CFers doesn't really impact my life. When people say, "You can't let CF rule your life" it's usually for bigger deal things like deciding to go to college, not deciding to spend a few hours at a benefit.
Cayston is for Pseudomonas Aeruginosa.
I agree that you can't let CF dictate your life, but it isn't worth the risk to attend a benefit with other people with CF. Instead I can do something else fun (like go to a bar if that's what I want to do) and donate some money to the CF foundation. And then I have a lot lower risk of catching a nasty bug. Not going to get togethers with other CFers doesn't really impact my life. When people say, "You can't let CF rule your life" it's usually for bigger deal things like deciding to go to college, not deciding to spend a few hours at a benefit.
I agree that you can't let CF dictate your life, but it isn't worth the risk to attend a benefit with other people with CF. Instead I can do something else fun (like go to a bar if that's what I want to do) and donate some money to the CF foundation. And then I have a lot lower risk of catching a nasty bug. Not going to get togethers with other CFers doesn't really impact my life. When people say, "You can't let CF rule your life" it's usually for bigger deal things like deciding to go to college, not deciding to spend a few hours at a benefit.
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i> Cayston is for Pseudomonas Aeruginosa. I agree that you can't let CF dictate your life, but it isn't worth the risk to attend a benefit with other people with CF. Instead I can do something else fun (like go to a bar if that's what I want to do) and donate some money to the CF foundation. And then I have a lot lower risk of catching a nasty bug. Not going to get togethers with other CFers doesn't really impact my life. When people say, "You can't let CF rule your life" it's usually for bigger deal things like deciding to go to college, not deciding to spend a few hours at a benefit.</end quote>
Very well put.
Very well put.
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i> Cayston is for Pseudomonas Aeruginosa. I agree that you can't let CF dictate your life, but it isn't worth the risk to attend a benefit with other people with CF. Instead I can do something else fun (like go to a bar if that's what I want to do) and donate some money to the CF foundation. And then I have a lot lower risk of catching a nasty bug. Not going to get togethers with other CFers doesn't really impact my life. When people say, "You can't let CF rule your life" it's usually for bigger deal things like deciding to go to college, not deciding to spend a few hours at a benefit.</end quote>
Very well put.
Very well put.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>live2breath</b></i> I am almost sure that the new inhaled antibiotic cayston is proven to help it that was one of the big selling point when they wanted to test it and it got approved by the FDA so quick</end quote>
I'm floored by how much factual, scientific information you aren't aware of.
I would recommend educating yourself on some of these issues so you don't further discredit yourself.
I'm floored by how much factual, scientific information you aren't aware of.
I would recommend educating yourself on some of these issues so you don't further discredit yourself.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>live2breath</b></i> I am almost sure that the new inhaled antibiotic cayston is proven to help it that was one of the big selling point when they wanted to test it and it got approved by the FDA so quick</end quote>
I'm floored by how much factual, scientific information you aren't aware of.
I would recommend educating yourself on some of these issues so you don't further discredit yourself.
I'm floored by how much factual, scientific information you aren't aware of.
I would recommend educating yourself on some of these issues so you don't further discredit yourself.
Incomudrox
New member
Any Bacteria that can use PENICILLIN for nutrients is NOT MY FRIEND!
^^ True fact.
^^ True fact.
Incomudrox
New member
Any Bacteria that can use PENICILLIN for nutrients is NOT MY FRIEND!
^^ True fact.
^^ True fact.
live2breath
New member
save go ***** off dude who are you to call me dumb I am going by what I have been told so dont even try it ass
live2breath
New member
save go ***** off dude who are you to call me dumb I am going by what I have been told so dont even try it ass
Actually, if I were you I would be greatful rather than defensive. These people have replied to warn you of potential risk of cross-contamination with really nasty bacteria. Would you want to be responsible for someone's serious health decline after having contracted B. cepacia at your event? Furthermore, Saveferris did not call you dumb. I think this can be an extremely important lesson for all of us. You CANNOT go by what somebody told you, nor can you believe everything you read on the internet. You must know your disease inside and out. That includes treatment options, medications, complications, risk factors etc. The more you know the safer you are. This is a public forum where skepticism and questioning should be welcomed and respected. If, in fact, you are speaking the truth, all the questioning in the world should only make your case stronger. If it turns out you are wrong, you should welcome the opportunity to learn.
Actually, if I were you I would be greatful rather than defensive. These people have replied to warn you of potential risk of cross-contamination with really nasty bacteria. Would you want to be responsible for someone's serious health decline after having contracted B. cepacia at your event? Furthermore, Saveferris did not call you dumb. I think this can be an extremely important lesson for all of us. You CANNOT go by what somebody told you, nor can you believe everything you read on the internet. You must know your disease inside and out. That includes treatment options, medications, complications, risk factors etc. The more you know the safer you are. This is a public forum where skepticism and questioning should be welcomed and respected. If, in fact, you are speaking the truth, all the questioning in the world should only make your case stronger. If it turns out you are wrong, you should welcome the opportunity to learn.