Friend with Cepacia

[anonymous]

Hi
I'm kind of confused...don't really know what to do. K I have CF and one of my best friends who also has CF has just found out he has cepacia also. I can't just stop seeing him. And I've been told "talk on the phone, internet" etc etc but I don't want to do that! My dr said about a mask but he also said that won't guarantee any thing plus I don't really want to wear a mask. I don't know if I'm being melodramatic about this, and its hard to tell whether the risks outweigh the benefits. I just can't imagine not seeing Mark!
Any ideas.....or anything?
Thanks!

Laura 18 wcf cfrd

 

[anonymous]

Laura,
Here are some simple measures you can take to minimize your risk of contracting cepacia from your friend:

- meet only in open, airy spaces. avoid close quarters contact like riding in the same car, or hanging out at his place.
- avoid personal contact i.e. hugging and/or kissing, shaking hands etc
- obviously avoid his cough and insist that he cover his mouth (that's just plain manners)
- do not share cups/straws or anything you'd both put your mouths on
- wearing a mask is an option, especially in close contact
-wash, wash, wash your hands and avoid putting your hands into your mouth and eyes
*essentially employing the same methods you'd use if you didn't want to catch a cold from someone*

Those are just a couple of suggestions, obvious ones at that. Remember however, that you're the one that doesn't have it, so it's incumbent upon you to do whatever you have to do to avoid getting it. I have cepacia... got it many years ago ( 15 years ago ) before they knew it was transmitted so easily from patient to patient. Cepacia isn't something you want to fool around with, so if you must see your friend, use your head.

Good luck and God bless-
-Rich

 

[kybert]

above advice is good. common sense really. if you are one of those people who touches your mouth or eyes alot [hard habit to break i know] put something on your hands so if you go to touch your face you will be reminded not to do it! tie a ribbon around your finger, write something on your hands, whatever. also, if he comes to <b>your</b> house he should be wearing a mask and gloves so he doesnt 'contaminate' your things. no need to call off the friendship or restrict things to the phone <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

All infection control is good. Cepacia is a nasty bug and often takes more than that. My son has Cepacia. While in the hospital (prior to knowledge of it) it was carried from his room to another CFers room. Carried on stethoscope or clothes, gowns and masks were already being worn. Our doctors affice doesn't even see us until after hours-Special Cepacia hours to ensure that another CFer isn't at risk. The cleaning staff has special cleaning instructions to ensure. Are we offended by this. Not at all. I would much rather go through that then live with the guilt that we put another CF person at risk

 

[anonymous]

I agree, all the advice is good. Just wanted to say something about the risks outweighing the benefits etc. Cepacia is really bad and even if you dont get immediately sick, there is no denying that it makes you decline faster, makes you have to consequently work a lot harder to stay heealthy, and basically effects your life in the long run a lot. Cepacia can become resistant to drugs and this is a big problem. Plus there is just nothing that can compare with your health. If you have to see your friend I would advise using all the precautions even the mask if you feel stupid, but mostly I would avoid seeing him. If you actually got cepacia, you would see why. Its hard though, because seeing your friends is also a major part of "quality of life"...so I see why its hard for you, but trust me, cepacia sucks plain and simple, really bad.

Caitlin
22 with CF, b. cepacia

 

[Kay]

Hello--

This is my first time on here but I also have contracted Cepacia, and although I never really made any friends with other CF patients it isn't something you want to get at all. I just got it about a year ago and ever since I have been on a steady but slow decline. Most of the medications I used to be able to take don't work anymore, and I have a greater trouble trying to recover from major colds and the like. I can't see giving up your best friend but I also can't see giving up your health either. It is a tough choice and I think the precautions stated are good, but also need to be taken seriously and without any hesitation. I make it a habit now that if any hospital staff (doctors, nurses, PT) come into my room they "gown and glove" so that it won't be passed on.

I hope you figure out a way that the two of you can stay in close contact, but that you stay in good health as well.

Kathleen

 

[anonymous]

I had posted in the family section and someone suggested going to the adult section because more of you have the cepecia bug. We were just told that Brady- our 4 year old is growing it. I am scared to death because most generally it seems like you are an adult before you get it. I just got some info from this post and I was wondering if anyone else with the bug has any suggestions or things we should be doing?

Help...... worried mother on the verge of a nervous breakdown...............

Angie (4kidsmom- log in name-- forgot to login AGAIN)

Step Mom to Brittany 13 no cf
Mom to Tyler 12 no cf, but a carrier
Mom to Brady 4 with cf
Mom to Taylor 3 no cf, but chromosome deletion of 9q 21.2 q 22.1 <u>Text</u>

 

[Diane]

I agree with what everyone else here has said. B.cepacia is not something to fool around with. If i were you ,i would only hang out with him in very open spaces and always keep 3 feet of distance. Also carry a lot of hand sanitizer and use it often, especially if you handle things he has handled. It may sound over the top and overly cautious but it isnt, believe me. Now a days ,I try to live by the same rules even with my friends who are perfectly healthy. You can never be too cautious. Unfortunately, i didnt learn that till after i got b.cepacia. Def. do not give up the friendship entirely, just be more cautious.

 

[anonymous]

Diane -- this is Angie, Michelle had told me to get ahold of you if I have further questions on cepecia-- she said you had helped her alot, I seen that you had posted the exact same time that I had on this topic. Do you have an email address or could you post more on your experiences with this bug?? My son Brady is 4 years old and is growing the bug (already).

Thanks- for some reason I can't get logged on today. My log in name in 4 kidsmom

Angie

 

[Diane]

Hi Angie,
My email is jinxnick@aol.com ........ email me anytime , id be happy to help you out. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

dear caitlin, i am a mom of a son 16 with cf who is mrsa positive. His cousin was just diagnosed with cepacia she is also 16. what suggestions would you have for them as far as what kind of quality of time do they spend if any together. please help<a target=new class=ftalternatingbarlinklarge href="mailto:kkidsmom4@ucwphilly.rr.com">Text</a>

 

[anonymous]

don't risk it. is seeing your friend really worth risking both your lives for? i dont think so.

 

[Emily65Roses]

I agree with pretty much everyone except the last poster (at 8:02). You two are very close friends, it seems like, and quality of life is a huge huge deal with CF. So don't call the friendship off altogether, but go with what people said here. Masks, gloves, all that stuff. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

With Cepacia........Gloves, mask, gowns just isn't enough. The masks, they are good for 20 minutes. breathing makes them moist. Those with Cepacia feel isolated but they do it for good reason, to avoid other CFers from going through what they go through.
My son had lots of CF friends. I once thought that the friendships were worth the risks until he cultured Cepacia. Yes, one of his friends contracted Cepacia and they never even spent anytime in the same room as each other. Carried over from hospital staff and they wore all the gowns, gloves, and masks.
Most hospitals seperate non-Cepacia and Cepacia patients to seperate floors.
Internet, web cams, telephones. Keep your friendships that way but don't take the risks of contracting Cepacia!

 

[Emily65Roses]

I want to make one point... internet, webcams, and telephones are all good and nice, but they are NOT the same thing.

You'll never get everyone to agree on this subject one way or another. You'll get a general agreement that cepacia is not something you want to get, but whether or not to see other CFers is a sensitive subject. Still seeing your friend is really a decision you have to make. Sit down, think about the pros and cons for seeing him and for not seeing him. Figure out which side is more worth it to you. But don't make the decision lightly. Be sure whatever side you choose is really the way you want to go.

 

[anonymous]

I dont know, I dont think that it is as simple as trying to decide what you think is more important because the person who doesn't have cepacia does not have enough information to make the decision. By that I mean, they do NOT have it yet and therefore cannot fully weight the risks/benefits, because they haven't seen how much cepacia can suck. It changes your CF life, and basically then your life in general, it really does, and its not enough to just think "he's my friend, I dont' want to give that up" without really thinking of what you might eventually have to deal with if contacting cepacia. Another thing is that everyone handles cepacia differently; some people become resistant quickly, some dont. Your friend might be ok with cepacia or he might not, but he would also probably feel terrible if you caught it and became really sick, and then BOTH of you were really sick.

Of course it is the ones of us with cepacia who are so careful w/ gowns, gloves, etc, now that we have the stupid thing. And often it is people who were careful beforehand, like myself and a lot of others on this board, so obviously the "hospital precautions" aren't enough in some situations, because we really dont know how we caught it in most cases. Anyway, I would take the advice of everyone here on this board who actually has cepacia and they all seem to be saying, "stay away as much as you can!"

-Caitlin

PS to the person who asked about MRSA...I do not have it and am not sure why you directed this question to me directly but I would recommend the same precautions as with cepacia and any other bug, although I have not seen MRSA to be as detrimental as cepacia to health, although it is definitely not good.

 

[anonymous]

Hi all, Laura again. I've been thinking about this heaps and am still not completely sure what I'm going to do. I agree with Emily- phone and all is not the same as seeing him. He wants to see me but he's being the sensible one telling me to stay away. It's not as easy as I thought it would be. Thanks for all your advice...I'm still deciding though.

 

[anonymous]

Also (me again, Laura!) Just wanted to say i know if it was me with cepacia I'd telling him to keep the hell away. But because he has it and I want to see him I'm not thinking along those lines.

 

[anonymous]

Caitlin-
Very well put. I talked with my son about this topic last night(He is 18 with Cepacia). His words were exactly of yours. He said he cried and hated giving up his CF friends but saving his friends from "Hell" is worth it.
Laura- I know what a tough decision this is for you. I know how hard it was for my son. The guilt is what put it in prespective for him. The fact that you are still very supportive of your friend is admirable. Cory has ran across a great many of people with CF that won't even talk to him because he has Cepacia.

 

[anonymous]

Caitlin is right. I too have contacted cepacia, not through the environment BUT from association with another CF infected patient. If you want to court death, go right ahead. This is not said lightly. Why don't you speak to other health professionals?? if you are really concerned.... there are no benefits when it comes to cepacia and I am being honest, remember some of those who have responded to your post have cepacia, listen to these people please. Mark would not want to be responsible for your subsequent demise in your own health.