"Bugs" transmission between cf patients

nocode

New member
Just wondering, just recently i was told seriously by my doctors that there are great chances of transmiting bugs between cf patients who have different ones. It's a shame because sometimes we meet someone and we'd like to hang out with them and if they have cf that chance is normally ruined. Is it to be taken serioulsy? I wouldn't risk it,no, but just wondering about what way you doctors put it for you.
Also,if you would like to share a story about the subject, go ahead.

Thanks.
 

nocode

New member
Just wondering, just recently i was told seriously by my doctors that there are great chances of transmiting bugs between cf patients who have different ones. It's a shame because sometimes we meet someone and we'd like to hang out with them and if they have cf that chance is normally ruined. Is it to be taken serioulsy? I wouldn't risk it,no, but just wondering about what way you doctors put it for you.
Also,if you would like to share a story about the subject, go ahead.

Thanks.
 

nocode

New member
Just wondering, just recently i was told seriously by my doctors that there are great chances of transmiting bugs between cf patients who have different ones. It's a shame because sometimes we meet someone and we'd like to hang out with them and if they have cf that chance is normally ruined. Is it to be taken serioulsy? I wouldn't risk it,no, but just wondering about what way you doctors put it for you.
Also,if you would like to share a story about the subject, go ahead.

Thanks.
 

coltsfan715

New member
"Bugs

I will be completely honest on this topic.

I have been told not to hang out wit other CFs, but there are a handful that I have met and interact with. I try to keep my distance as in most cases I am the one with the more serious bugs -meaning Psuedo and Staph. The people that I know either grow nothing regularly or only grow Psuedo.

I think so long as you keep some distance between you and so long as all people involved are aware of their germies that it isn't to big of a problem.

That being said I would not be very likely to hang out in person with CFers that have more serious bugs than me. It is nothing personal to them - I just have enough issues with the bugs that I have I really don't want to take on another one. That and I don't trust 100% that people will keep their germs to themselves lol.

It is definitely a very personal choice for people.

Lindsey
 

coltsfan715

New member
"Bugs

I will be completely honest on this topic.

I have been told not to hang out wit other CFs, but there are a handful that I have met and interact with. I try to keep my distance as in most cases I am the one with the more serious bugs -meaning Psuedo and Staph. The people that I know either grow nothing regularly or only grow Psuedo.

I think so long as you keep some distance between you and so long as all people involved are aware of their germies that it isn't to big of a problem.

That being said I would not be very likely to hang out in person with CFers that have more serious bugs than me. It is nothing personal to them - I just have enough issues with the bugs that I have I really don't want to take on another one. That and I don't trust 100% that people will keep their germs to themselves lol.

It is definitely a very personal choice for people.

Lindsey
 

coltsfan715

New member
"Bugs

I will be completely honest on this topic.

I have been told not to hang out wit other CFs, but there are a handful that I have met and interact with. I try to keep my distance as in most cases I am the one with the more serious bugs -meaning Psuedo and Staph. The people that I know either grow nothing regularly or only grow Psuedo.

I think so long as you keep some distance between you and so long as all people involved are aware of their germies that it isn't to big of a problem.

That being said I would not be very likely to hang out in person with CFers that have more serious bugs than me. It is nothing personal to them - I just have enough issues with the bugs that I have I really don't want to take on another one. That and I don't trust 100% that people will keep their germs to themselves lol.

It is definitely a very personal choice for people.

Lindsey
 
S

sdelorenzo

Guest
"Bugs

You just never know when a bacteria will spread between those with cf. If you are around others with cf, you are taking a chance that your child might catch a bacteria they have.

Both of my children as well as my nephew have cf, so this spreading germs between them is a concern for us. I do not keep my children separated as it is nearly impossible. They do not share the same drinks, etc, however. My daughter has always just cultured staph. My son did not culture staph until he was two. So it took two years for him to culture her bacteria. But I still don't even know if he cultured it from her. After all, where did she culture it from?? My son has now cultured psuedomonas twice. Once at his first birthday and now this past month. He also cultured E. Coli for his first year and my daughter never did.

We spent a weekend with my nephew in August. He and my son both cultured pseudomonas a few weeks later. My nephew had never cultured it before. Did they pass it to each other before we knew one of them had it? Possibly. It was a risk that we knew we were taking when we all spent time together.

I do not have my kids spend time with anyone else that has cf. It is just not worth the risk. They run enough risk just going to the cf clinic. There is a child down the street that has cf as well. My son is in this boy's brothers class at school. They are really good friends, but my son is not going over to his house to play. It is just not worth the risk of my son or his brother passing on bacteria to one another.

So like everything else, you just have to ask yourself if it is worth the chance of getting their bacteria if your son spends time with them.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf and aunt to Joseph, 9 with cf
 
S

sdelorenzo

Guest
"Bugs

You just never know when a bacteria will spread between those with cf. If you are around others with cf, you are taking a chance that your child might catch a bacteria they have.

Both of my children as well as my nephew have cf, so this spreading germs between them is a concern for us. I do not keep my children separated as it is nearly impossible. They do not share the same drinks, etc, however. My daughter has always just cultured staph. My son did not culture staph until he was two. So it took two years for him to culture her bacteria. But I still don't even know if he cultured it from her. After all, where did she culture it from?? My son has now cultured psuedomonas twice. Once at his first birthday and now this past month. He also cultured E. Coli for his first year and my daughter never did.

We spent a weekend with my nephew in August. He and my son both cultured pseudomonas a few weeks later. My nephew had never cultured it before. Did they pass it to each other before we knew one of them had it? Possibly. It was a risk that we knew we were taking when we all spent time together.

I do not have my kids spend time with anyone else that has cf. It is just not worth the risk. They run enough risk just going to the cf clinic. There is a child down the street that has cf as well. My son is in this boy's brothers class at school. They are really good friends, but my son is not going over to his house to play. It is just not worth the risk of my son or his brother passing on bacteria to one another.

So like everything else, you just have to ask yourself if it is worth the chance of getting their bacteria if your son spends time with them.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf and aunt to Joseph, 9 with cf
 
S

sdelorenzo

Guest
"Bugs

You just never know when a bacteria will spread between those with cf. If you are around others with cf, you are taking a chance that your child might catch a bacteria they have.

Both of my children as well as my nephew have cf, so this spreading germs between them is a concern for us. I do not keep my children separated as it is nearly impossible. They do not share the same drinks, etc, however. My daughter has always just cultured staph. My son did not culture staph until he was two. So it took two years for him to culture her bacteria. But I still don't even know if he cultured it from her. After all, where did she culture it from?? My son has now cultured psuedomonas twice. Once at his first birthday and now this past month. He also cultured E. Coli for his first year and my daughter never did.

We spent a weekend with my nephew in August. He and my son both cultured pseudomonas a few weeks later. My nephew had never cultured it before. Did they pass it to each other before we knew one of them had it? Possibly. It was a risk that we knew we were taking when we all spent time together.

I do not have my kids spend time with anyone else that has cf. It is just not worth the risk. They run enough risk just going to the cf clinic. There is a child down the street that has cf as well. My son is in this boy's brothers class at school. They are really good friends, but my son is not going over to his house to play. It is just not worth the risk of my son or his brother passing on bacteria to one another.

So like everything else, you just have to ask yourself if it is worth the chance of getting their bacteria if your son spends time with them.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf and aunt to Joseph, 9 with cf
 

spicyone18

New member
"Bugs

Like others have said its a very personal choice. I myself risk it. One of my best friends that I have grown up with has CF. We have always done stuff together, I have spent time with her even while shes in the hospital. I culture stuff regularly where as she doesn't. So you can never tell I guess.
 

spicyone18

New member
"Bugs

Like others have said its a very personal choice. I myself risk it. One of my best friends that I have grown up with has CF. We have always done stuff together, I have spent time with her even while shes in the hospital. I culture stuff regularly where as she doesn't. So you can never tell I guess.
 

spicyone18

New member
"Bugs

Like others have said its a very personal choice. I myself risk it. One of my best friends that I have grown up with has CF. We have always done stuff together, I have spent time with her even while shes in the hospital. I culture stuff regularly where as she doesn't. So you can never tell I guess.
 

Bumblebee

New member
"Bugs

I have a twin sister with CF so have grown up constantly in a cross
contamination situation.  However there is no way i wouldn't
hug or kiss her, she is my happiness!  The only time she
wasn't allowed into see me was when i was in hospital and my immune
system had shut down due to a drug reaction- she waved at the
window hehe. But no one with a cold or anything was allowed in, not
just her.  I've also had a serious relationship with another
CFer in the past.  We knew the risks, but had the same bugs
and were both of the opinion of life is too short - when you
connect like we did even though it didn't last it was worth
it .<br>
<br>
I will not meet with anyone who has more serious bugs than me i.e.
cepecia.  I will also not meet up with people who have less
bugs than me but hardly anyone past the age of 18 doesn't not have
pseudo.  But i'd hate to think i'd infected them.  I
completely respect other peoples decisions if they don't want to
meet as well.<br>
xxxx
 

Bumblebee

New member
"Bugs

I have a twin sister with CF so have grown up constantly in a cross
contamination situation.  However there is no way i wouldn't
hug or kiss her, she is my happiness!  The only time she
wasn't allowed into see me was when i was in hospital and my immune
system had shut down due to a drug reaction- she waved at the
window hehe. But no one with a cold or anything was allowed in, not
just her.  I've also had a serious relationship with another
CFer in the past.  We knew the risks, but had the same bugs
and were both of the opinion of life is too short - when you
connect like we did even though it didn't last it was worth
it .<br>
<br>
I will not meet with anyone who has more serious bugs than me i.e.
cepecia.  I will also not meet up with people who have less
bugs than me but hardly anyone past the age of 18 doesn't not have
pseudo.  But i'd hate to think i'd infected them.  I
completely respect other peoples decisions if they don't want to
meet as well.<br>
xxxx
 

Bumblebee

New member
"Bugs

I have a twin sister with CF so have grown up constantly in a cross
contamination situation.  However there is no way i wouldn't
hug or kiss her, she is my happiness!  The only time she
wasn't allowed into see me was when i was in hospital and my immune
system had shut down due to a drug reaction- she waved at the
window hehe. But no one with a cold or anything was allowed in, not
just her.  I've also had a serious relationship with another
CFer in the past.  We knew the risks, but had the same bugs
and were both of the opinion of life is too short - when you
connect like we did even though it didn't last it was worth
it .<br>
<br>
I will not meet with anyone who has more serious bugs than me i.e.
cepecia.  I will also not meet up with people who have less
bugs than me but hardly anyone past the age of 18 doesn't not have
pseudo.  But i'd hate to think i'd infected them.  I
completely respect other peoples decisions if they don't want to
meet as well.<br>
xxxx
 

lilmac7

New member
"Bugs

well....here we go, a very intersting topic and now I will disclose something that I haven't done before. My girlfriend has Immotile Cylia Syndrome, basically the cylia doesn't work so the musus doesn't get cleared easily and stays there and becomes a breeding ground for bacteria. Symtoms will lead up to being very similar with CF lung wise, the mucus will become thicker because it's not being cleared and bacteria will grow. Now she cultures pseudomonas and staph regularly from many years ago, we only met last year around February or March, we clicked and needless to say we began dating and we knew the risks and discussed it. Now when either of us are sick we keep our distance for the most part, no kissing, keep our faces away from each other when we're sleeping, no sharing drinks, that sort of thing. I on the other hand culture Staph and Cepacia (which I told her about obviously) regularly, I had trouble with pseudomonas too for many years untill sometime 2002 which I seemed to have gotten rid of it and it hasn't showed up since (knock on wood). She hasn't caught any of my bugs (the supposedly extremely contageous Cepacia) nor have I showed up with pseudomonas from her. Personally I believe we are exposed to these bugs all the time and depending on our health at the time and intensity of the bug being exposed to affects whether we get it or not. I basically had no contact with any person with CF as for the longest while I was the only person where I live (Grand Cayman, Cayman Islands) who had it, it's only recently that other cases are showing up and they are young kids not adults. So where did I get pseudomas, staph and cepacia from? I personally believe that contact with rotted produce (potatoes, tomatoes, onions, etc) got me the caepacia as many times I would have to dump them because my mom's eyesight is really bad so she cant see to know they're soiled untill she picks them up or they're that bad that they smelled. As for the staph and pseudomonas, only God knows where I picked them up, but thankfully I've gotten rid of at least the pseudomonas.
So that's my story and opinion on it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

lilmac7

New member
"Bugs

well....here we go, a very intersting topic and now I will disclose something that I haven't done before. My girlfriend has Immotile Cylia Syndrome, basically the cylia doesn't work so the musus doesn't get cleared easily and stays there and becomes a breeding ground for bacteria. Symtoms will lead up to being very similar with CF lung wise, the mucus will become thicker because it's not being cleared and bacteria will grow. Now she cultures pseudomonas and staph regularly from many years ago, we only met last year around February or March, we clicked and needless to say we began dating and we knew the risks and discussed it. Now when either of us are sick we keep our distance for the most part, no kissing, keep our faces away from each other when we're sleeping, no sharing drinks, that sort of thing. I on the other hand culture Staph and Cepacia (which I told her about obviously) regularly, I had trouble with pseudomonas too for many years untill sometime 2002 which I seemed to have gotten rid of it and it hasn't showed up since (knock on wood). She hasn't caught any of my bugs (the supposedly extremely contageous Cepacia) nor have I showed up with pseudomonas from her. Personally I believe we are exposed to these bugs all the time and depending on our health at the time and intensity of the bug being exposed to affects whether we get it or not. I basically had no contact with any person with CF as for the longest while I was the only person where I live (Grand Cayman, Cayman Islands) who had it, it's only recently that other cases are showing up and they are young kids not adults. So where did I get pseudomas, staph and cepacia from? I personally believe that contact with rotted produce (potatoes, tomatoes, onions, etc) got me the caepacia as many times I would have to dump them because my mom's eyesight is really bad so she cant see to know they're soiled untill she picks them up or they're that bad that they smelled. As for the staph and pseudomonas, only God knows where I picked them up, but thankfully I've gotten rid of at least the pseudomonas.
So that's my story and opinion on it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

lilmac7

New member
"Bugs

well....here we go, a very intersting topic and now I will disclose something that I haven't done before. My girlfriend has Immotile Cylia Syndrome, basically the cylia doesn't work so the musus doesn't get cleared easily and stays there and becomes a breeding ground for bacteria. Symtoms will lead up to being very similar with CF lung wise, the mucus will become thicker because it's not being cleared and bacteria will grow. Now she cultures pseudomonas and staph regularly from many years ago, we only met last year around February or March, we clicked and needless to say we began dating and we knew the risks and discussed it. Now when either of us are sick we keep our distance for the most part, no kissing, keep our faces away from each other when we're sleeping, no sharing drinks, that sort of thing. I on the other hand culture Staph and Cepacia (which I told her about obviously) regularly, I had trouble with pseudomonas too for many years untill sometime 2002 which I seemed to have gotten rid of it and it hasn't showed up since (knock on wood). She hasn't caught any of my bugs (the supposedly extremely contageous Cepacia) nor have I showed up with pseudomonas from her. Personally I believe we are exposed to these bugs all the time and depending on our health at the time and intensity of the bug being exposed to affects whether we get it or not. I basically had no contact with any person with CF as for the longest while I was the only person where I live (Grand Cayman, Cayman Islands) who had it, it's only recently that other cases are showing up and they are young kids not adults. So where did I get pseudomas, staph and cepacia from? I personally believe that contact with rotted produce (potatoes, tomatoes, onions, etc) got me the caepacia as many times I would have to dump them because my mom's eyesight is really bad so she cant see to know they're soiled untill she picks them up or they're that bad that they smelled. As for the staph and pseudomonas, only God knows where I picked them up, but thankfully I've gotten rid of at least the pseudomonas.
So that's my story and opinion on it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Diane

New member
"Bugs

well, years ago (26 to be exact) when i was first diagnosed with diabetes i spent a lot of time in pediatrics at a childrens hospital and met several cf patients. Some i became friends with. I also had more than one cf patient as a room mate. Back then they kept 4 - 6 in a ward ( ooooooo what a bad idea). Any way i didnt have lung involvement back then and maybe that was a blessing, because i didnt pick anything up. I dont think they even knew about cepacia back then, and i never even heard the word psudomonas. There was never a mention of all these bactarial infections i could catch, and sadly i never knew the risks till i got cepacia 9 years ago. I am guessing when i switched Clinics when i was 27 they probably figured i HAD to know the risks by then, but i didnt. I am now very afraid to be around other cf patients because since i already have cepacia i am at risk of getting whatever they have , and i sure dont want to give them what i have. I did a car show this summer to benefit cf and there was a cf patient there that i met last year. We kept at least 4 feet apart to talk ( outdoors on the field ). He does not have cepacia and when i emailed him before the show i told him that i did, and that we have to keep distance. It really is a personal decision as everyone else has mentioned. Before i knew the risks i welcomed any cf patient as a friend, but now a days i dont even welcome people with the sniffles....lol
BUT i love my online cf friends <img src="i/expressions/heart.gif" border="0">
 

Diane

New member
"Bugs

well, years ago (26 to be exact) when i was first diagnosed with diabetes i spent a lot of time in pediatrics at a childrens hospital and met several cf patients. Some i became friends with. I also had more than one cf patient as a room mate. Back then they kept 4 - 6 in a ward ( ooooooo what a bad idea). Any way i didnt have lung involvement back then and maybe that was a blessing, because i didnt pick anything up. I dont think they even knew about cepacia back then, and i never even heard the word psudomonas. There was never a mention of all these bactarial infections i could catch, and sadly i never knew the risks till i got cepacia 9 years ago. I am guessing when i switched Clinics when i was 27 they probably figured i HAD to know the risks by then, but i didnt. I am now very afraid to be around other cf patients because since i already have cepacia i am at risk of getting whatever they have , and i sure dont want to give them what i have. I did a car show this summer to benefit cf and there was a cf patient there that i met last year. We kept at least 4 feet apart to talk ( outdoors on the field ). He does not have cepacia and when i emailed him before the show i told him that i did, and that we have to keep distance. It really is a personal decision as everyone else has mentioned. Before i knew the risks i welcomed any cf patient as a friend, but now a days i dont even welcome people with the sniffles....lol
BUT i love my online cf friends <img src="i/expressions/heart.gif" border="0">
 
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