Contact with other CFer's

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anonymous

New member
Hi
My friend is in her 40's with CF (diagnosed 3yrs. ago) and recently she has been on IV anitbiotics, (cipro), not sure what infection she has, etc... My daughter is 15 and has CF, never been hospitalized, very mild CF so far. From what I have learned I do not think it is safe for them to be in contact at all, right????? Thanks so much for your help. Joan
 
M

momtologan

New member
Joan,
My name is Karen, hello. Be sure to check with your child's Doctor, my sons Doctor says that he is not contagious to me or my other children but he would be contagious to someone else with CF. I guess this is when he has an infection or is coughing really bad is how I understood it. Are seeing the Dr. tomorrow that was something on my list to ask. My son was just Dx in August and is being Hospitalized for the first time this week, this is all still new to me. Hope this helps.
Karen
~Mom to Logan 4 1/2 wc/f
 
I

IG

Guest
Check with the doctors...
if one or the other has something like MRSA, or b. cepacia... stay away at all costs, my opinion because once you [by you I mean the CFer] gets either of those... it's not good, nor is it easy [if even possible] to get rid of them.
It depends really on what the doctors says... and what he recommends you do to prevent cross contamination.
 
A

anonymous

New member
She probably at least has pseudamonas if she is hospitalized and on cipro, and in that case, if your daughter does not have it it would really be in her best interest to not get it, or to catch any bug that your friend might have. My guess is that if your daughter has been fairly healthy so far that she probably doesnt grow anything significant, and she definitely would want to keep it that way!! I personally would advise not having your daughter hang out with your friend...even when she's not "sick." A healthy cf-er is too good a thing to waste!
 
A

anonymous

New member
That's a crappy thing about having CF. There are so many other people with CF that you can relate to, but really shouldn't be near for fear of getting each other sick. My doctor has always advised me not to be with other CFers on the chance that we'd exchange bugs. When I'm in the hospital getting IV meds, I have to wear a mask anytime I'm out of the room to lessen the chance of giving other CFers MRSA. So, yes, that's true...our lungs are so susceptable to bacteria that it's easy for us to share our bugs with each other.


erin
20/f/cf
 
J

JennifersHope

New member
I know they say that Cfers shouldn't be together.... I understand why they say that and I don't feel like kids with CF should be together because they may not be able to maintain safe precautions...

I as an adult have been around other CFers.. I met up with a whole bunch of other ppl that I met on CF 2 Chat and we had a wonderful time.. We all met in MN at the transplant games. I at the time was not culturing anything in my lungs so I roomed with a girl who had a lung transplant.. SHe was awesome....

I also have stayed at my friends house in Wisconsin and he has CF and did culture stuff.. We were just careful... My other good, dear friend has Cepecia and I didn't go to his house but we hung out and went places together....and I was fine......

My experience with being around other CFers has made my life so much richer....and the bonds that I have with these ppl will never break...

That being said.. I wouldn't bring your daughter to the hospital to see her, to many germs there, esp if her lungs have not been damaged yet. I would ask your dr what they think, I think the CFF.org rules are you should be at least three feet away from each other... and then you know the normal precautions, good hand washing, throwing away tissues right away and stuff like that....


Good Luck..

Jennifer
 
A

anonymous

New member
It is very sad that we can't 'bond' with other CFers. As a kid, we all played with the same toys in the same waiting room while our parents visited. It was like one big family and that support for both kids & parents was very beneficial. I'm sure we all passed the same pseudomonas strains around, but didn't know any better.
Now, though w/ MRSA and burkholder cepacia as risks, kids just can't do that anymore.<img src="i/expressions/brokenheart.gif" border="0">
 
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