cfers spreading germs to each other

anonymous

New member
How has it been determined that CFers pass serious infections to each ohter verses just normal kids passing them, say colds or hemaphillus or something else. I saw once, that CFers shouldn't be more then arms length within each other is that true?

Any information regarding this serious but complacated situation would be appreciated.

Thanks
 

AbsintheSorrow

New member
The CFF no longer advocates CFers meeting in person. We pass stuff just like regular kids, but we have worse bugs to pass. Not just colds and flus, but MRSA, staph, pseudomonas, and other lung bacteria. I want to say we pass stuff at the same rate, but we have more dangerous stuff to pass.

However. My personal opinion is as follows: I do not avoid all CFers. Before they knew that we passed bugs, I grew up going to CF parties, and fundraisers. I grew up around other CFers. And I wouldn't trade it for anything. It's a very personal decision, and many people would tell you to NEVER go near other CFers. I don't live that way, myself. Twice in the past few months I've met up with NoDayButToday, Coll from this board. She lives in NJ and I live in CT, so it's not too far. As long as you don't do anything really stupid, I'd say still do it. But, of course, it's up to you. Just take normal precautions if you do... don't share drinks, don't cough in each other's faces, cover your mouths, etc. As long as you're somewhat careful, you should be okay. Mind you, you're still at risk for passing bacteria. But you cannot avoid pseudomonas no matter what you do. If someone's got cepacia, maybe you'd want to be a little more careful. Maybe wear masks when you're around each other? Like I said, though, it's up to each individual person or family. I personally wouldn't advise against avoiding other CFers at all costs. For me, as well as for others (Coll, for instance), the benefits outweigh the risks. Being able to be friends with someone who *truly* understands EVERYTHING that you go through, whereas most people haven't the slighteset clue, is priceless.
 

Emily65Roses

New member
Okay I have NO IDEA what my computer's problem is. It keeps losing my automatic saved passwords, and for some reason, totally unknown to me, it pulled my old name and password out of it's USB butt. But that was me.
 

julie

New member
lol, technology....

to answer the question, I won't repeat what emily said about the CFF because it's accurate. My husband is the one with CF and he prefers to live and remember his life by the quality and not so much the quantity. Meaning, he realizes the risks of socializing with other Cfers (and he is very secretive of his CF so he doesn't have friends with CF, but has run into and tried to inspire a few youngsters with CF) might be risky health wise, but what's more important in the end? Living a long life with very little friends and very limited activites OR living a life that might be a little bit shorter but has all the friends and fun time one could ever want to remember.

Not sure if this is exactly what you were asking, if not, let me/us know... I'll try to give you a more clear answer.
 
L

luke

Guest
I agree with the Emily, I never avoid someone because they have CF. I went to CF camp 15 years ago and it is a lasting memory for me. Actually, I don't have the opportunity to meet many other CF patients anymore but would love to be more active with others. With that being said, I am afraid of cepacia and unfortunately would error to the side of caution and not get to physically "close" to those guys.


luke
 

anonymous

New member
i go to all kinds of cf fundraisers were there are other cf people we just take extra care like no hugging,drinking after each other, coughing without covering and we use a lot of hand cleaner. but you need to be careful last year at a walk two brothers showed up that i know has mrsa. I left after they got there, somethings i don't like to be around
 

Emily65Roses

New member
See, that again is a matter of opinion, and personal choice. I myself had MRSA back in 01. Granted, I haven't cultured it since, but Coll knew that when she met me... and met me anyway. Heh. So in the end, it's all up to you.
 

anonymous

New member
I agree with everyone else.. I chat on a different board and last year I met up with about 10 other CFers at the transplant game in MN. It was one of the most wonderful experiences in my life.. I have become really close with some of those ppl, in fact I have been back there to visit them and they came to visit me...

The first time I went I shared a room with a girl that was post transplant, it was safe for her to be with me because I don't culture anything and we were careful... I was around lots of ppl with MRSA. Staph and all types of Pseduo. One of my close friends has Cepacia and I was around him a great deal of the time... We were just careful.

Last time I was there was over Christmas and I stayed at one of my friends house with him and his girlfriend (they are both my dear friends) we just used sep. bathrooms and any common eating utensils went in the dishwasher... I was fine and so was he.

I wouldn't trade my relationships with these ppl for anything in the world.. I think it is a personal choice as well.. For me, I can't wait to go back and I am already planning my next trip.


Jennifer 32 w/ CF and Addison's
 

anonymous

New member
Hey guys and gals, please don't take this the wrong way, however, although priceless relationships with fellow CFers can be more then gratifying, I have to ask. Is it safe to say, that most of your relationships that are priceless and irraplaceable, are based on the fact that you are all of mature age group, therefore, having the undoubtibly respect for each other when it comes to personal space and that of not coughing and or sneezing or spreading of germs respectively within each others personal space?

I mean, if you were two four year olds, and in the play ground, would you respectively be cautious of each others space? I mean would you not sneeze near each other, or cough on each other, or even wipe some form of nose secreation on each other accidentely?

Although, I totally understand friendship and respect the common ground between CFers, would it be safe to say, that a younger age group would be less capable of iddentifying with potential danger amongs each other, in comparison with an older much more mature age group?

In that I mean, a four year old can be told to wash their hands over and over again, but might only wash their hands a third of the time requested. Where as an adult or at least teanager, would respectively appreciate the potential danger and won't contaminate your personal body and/ or space.

In Cf clinics, I find that all age groups are keeping their distance, walking around, not sitting too close, and even avoiding conversation. Is it really a personal choice cause I have been reading these post and find that everyone says they are all, for being up, close and personal, but in the end who will say " no thanks, I will take the next lung transplant that I desperately need and give it to him, only to wait for another six months for a potential donor for myself.

I'm just trying to get a realistic view on this subject, because, unlike AIDS victims and/ or hepetitis "C" victims, grave quantities of bodily fluids would need to be exchange in order to cross-contaminate, however, CFers, need only to cough on each other and infections can be transfered with serious consequences.

It is very noble of most of you and others such as my child to be friends with fellow Cfers, however, does friendship override life, safety, longevity for our children? I tend to air on the side of caution, their are other great relationships my child or yours can have with children their own age, until they are of mature age to respect and to appreciate common personal space and bounderies, I feel that their is a questionable allowance on the closeness one can share with a fellow Cfer at such a young age.

What do you think? ALL comments welcome, just keep in mind honesty!!!!! Need responses ASAP!!!!

Thanks.
 

anonymous

New member
Dear Annonymous
I totally agree with you. I have a 9 year old with CF who goes to school with another 9 year old with CF, they are friends and really like each other alot. They are both in the 4th grade and were sooo excited that they were in the same classroom this year. My daughter is normally pretty healthy for having CF and the other child unfortunatly is not. I have met the mother and i think that we both share the same concerns for our children, during school orientation it took me by surprise to learn that her child was hospitalized all summer and very sick, it broke my heart and i left the school in tears, it also broke my heart to have to explain to my child why i switched her classroom. It is hard to explain to a 9 year old that the both of them can get each other very sick and why they can't be in the same class. The other little girl almost lost her battle with CF this summer and i do not want my child to get her sick and vice-versa. I am very open with the parents about what bacteria my daughter cultures and unfortunalty they are not as open with me about their child, I can respect their privacy but i know that i also have to protect my child and do what i think is right for both children. This starting of this school year has been tough and very touching and my heart breaks for both girls.

kaitsmom<img src="i/expressions/rose.gif" border="0">
 

Emily65Roses

New member
I didn't know we were talking about young children. I myself am 21, and the CFer I go and visit is a VERY mature 16. So we know enough to pay attention to little things that kids tend to ignore.
 

wuffles

New member
When I was younger (meaning aged 3 to about 12), I had two friends with CF that I socialised with once every few months. We did all the things regular kids do when they hang out with each other - swimming, running, playing with animals. My CF was the mildest, and one of them has passed away since. Despite this, I didn't culture pseudemonas or anything else until I was 18, was never in hospital.

I really think it depends on the different infections and personal choice.
 

anonymous

New member
I would err on the side of caution with children. It only takes one time of being exposed to B Cepacia or MRSA to pretty much have it for life & that can make things hell.
In my opinion, for Kaits mom, the fact that they are not being 'open' about what their daughter cultures may indicate that there is an issue that they don't want you to know about or simply that they don't know what their daughter cultures, although I think they would almost have to know. Maybe they are private, though, and don't think it's anyone's business--who knows?
Is there a way the 2 girls could talk on the phone knowing that getting together in the same area is just not best for both of them? Then at least they could talk to someone that understands about doing treatments, taking enzymes, having tune ups, etc and not feel so different or alone.
Just an idea.
 

Emily65Roses

New member
Just to go along with what Emma Wuffles said... I was around CFers constantly for (at least) my first ten years of life. I was a poster child, and was constantly surrounded by other CFers, at CF walks, bikeathons, parties, etc. The first thing I ever contacted was MRSA, and it was from working in a retirement home. I was 16. I didn't culture pseudomonas until after that. So despite being around those kids and people all my life, I didn't culture a damn thing until I was 16. It changes from one situation to the next... I just wanted to point that out.
 

anonymous

New member
One thing I wanted to run past Emily is....was b cepacia even around (to your knowledge) when you were 10 and under?
When I was little we all went to the same clinic and played with the same toys, but I don't remember B Cepacia or even MRSA being around then. So to me, that would make a difference for today's kids vs. us that were kids 10-20 years ago--just the fact that possibly more is at risk these days? Just food for thought....
Elle
 

anonymous

New member
Hey guys and gals, it's me again. Thank you for your comments and of course need to ask some more questions. Is it safe to say, that their are no guarantees when it comes to who/when/what/where/ or how someone will get infected with a bacteria that could potentially be hazardous and ultimately deadly in some cases? I mean, sure have friends that is important, but to put your child ( I mean young, under 10) at risk to say the least is questionable don't you think? If we know the danger is there. why don't they have CF camps? or why do they suggest keeping minnamal space, three feet to be exact from fellow CFers? and why do they recommend not sociallizing at clinic? I think they know the reasons just can't be concrete about it, don't you think? My daughter went to a Birthday party on the 6th of August, where they went swimming at a gym pool, well chlorined and such, very popular. ON the 15th she had clinic and they found pseudomonas, my daughter has never been sick with any infection and only takes enzymes and the occasional puffer. Now we are retesting tomorow and she might have to start an agressive tobi treatment. Some say we shouldn't shelter our kids, however, just swimming in a pool has compramised my daughters health by too much. this is why I have been asking all these questions, cause if it was that easy to get a bacteria through swimming, how likely is it through other CFers. No offense, but I value my daughters life more then any others next to her brothers over yours or my neighbors. I mean I would never ever put your child in harms way and would give my life to save someones child from say drowning or car accident, but don't ultimately ask me to chose between my child or yours cause I will always chose mine without a doubt. I would give my life for anyones child but would never compramise my childs. So I ask you, do we err on the side of caution? Or do we just go with the flow and hope for the best? My daughter is 5yrs old and might have compromised her health by going to a b-day party.
 

Emily65Roses

New member
Elle - good question. I haven't the slightest clue. Heh. But think about it this way: When I was under 10 (I was 10 in 1994), pseudomonas was a much bigger deal all by itself. When it started, once a CFer got pseudomonas, that was the beginning of the end. And they knew that was around. So maybe cepacia and MRSA weren't around then, maybe they were. I have no idea. But pseudomonas was also more dangerous back 10-15 years ago. Good question though. And very good point, I must say.

Original poster - Before I start, I will remind everyone that this is my personal opinion. If you're going to be cautious in some areas and not others... (which would be a good way to go, so that you keep your kids as safe as possible, without locking them in a closet), I would keep them away from other CFers. But don't keep her from going swimming and stuff. You want to try and avoid MRSA and cepacia, most certainly. Like Elle said, these are riskier. But pseudomonas, no matter what you do, will eventually pop up at some point or another. You can't kill 100% of germs 100% of the time. Swimming pools are obviously a bigger risk, yes, but you know pseudomonas is also probably in your own bathroom. If you want a happy medium, I'd say keep your daughter away from other CFers (in real life, but ABSOLUTELY introduce her to people online, maybe let her talk to some on the phone, or a webcam - if you don't see CFers in real life, you must still allow your child to talk to others, I find it's very important), but don't keep her away from regular public places like pools. I think that would serve as a pretty good middle ground.
 

anonymous

New member
Emily
I do agree with you, i was very excited when Kait met her friend 3 years ago at school, i thought that it would be great for both girls to get to know each other and understand that they are not alone or different. This family put kaits name in the Earth Angel foundation and Kait was granted her dream vacation. The girls did spend 1st grade in the same classroom and didn't have any problems but the more that i have learned about the horrible bacterias that CFers culture the more that it scares me and the more that i want to protect my child. I do not shelter kait as far as playing and swimming and doing all of the things that kids her age do, however when one of her friends are sick or she is sick i do become the very OVER PROTECTIVE mother. Kait enjoys life and everything that it has to offer her, she is very active and i hope that she will always live her life to the fullest. I sometimes think that i want to homeschool and put her in a little bubble and keep her all to myself (selfishness) but she would resent that so much. She has much to offer this world and it has much to offer her with CF or without.

Kaitsmom<img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Hey there,
I have been reading everyones posts about this subject, which is very important to me. My daughter was diangosed with CF about 6 months ago. A child accross the street also has CF. Almost every evening we go outside and meet all the neighbors and their kids to play in the street. My daughter is two so, I cannot explain to her to stay away from the other childs bike or toys. My daughter is also very tempermental and it is hard to tell her no to anything. The other child has a many cool outdoor toys my daughter doesn't have. Up until now I have been letting her play with them. I am starting to rethink this, because so far my daughter has mild CF symptoms. The other child has been sick and has cultured pseudomonis (I have no idea if that is how to spell it). My daughter does not have it. Maybe we shouldn't let them play with eachothers things? But if they are outside, aren't in eachothers faces, don't touch eachothers toys and we wash hands before and after shouldn't it be ok? Having the other family accross the street has been a true blessing to us. I hope changing their playing habits won't make a difference in the relationship I have with the other childs family. What do you think?
 

anonymous

New member
Hey, I wish I can say that we can live in a world free of threats to our children and such, but the fact of the matter is, it isn't. We can't and unfortunately, I have serious concerns with my CFer being so close to another. Toy sharing, clinic sharing, school sharing, ect..... I mean don't get me wrong, like I said before, when your child is of mature age to comprehend personal space, and my child is of the same age to comprehend, absolutely, unconditionally, they will be great friends. However, at 1, 2, 3, 4, even 10, only cause little 10 yr old boys are so, well, boyish lol. I would never forgive myself nor would I ever be free of questionable doubt on my desicion to allow something to go wrong. I meen what if they harm each other? what if one gets deathly ill? I could never forgive myself. And I know they can get hit by a car tomorow, but not in any time soon, ever, will I be throwing my child in front of a moving car!!!!!! Here is a question?? Honest answers only please!!!! If you know a child who cultures some sort of bacteria, and/or is of just bad health and the mother is just too eager to, well let's just say insist on her child playing or even joining in some common activities with your healthy fchild CFer, would you not question her motives or lack, there of concern for your child?? If she insists that her child has a cousin near by and therefore should have the right to allow her child in the activities, adding potential danger for your child to catch or culture her bacteria, would you not second guest her motives??? I mean if they cross paths in the hall way and she sneezes on your daughter/son, are you not that afraid to sacrifice or compromise your childs life for the sake of neighbors??

take care
 
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