Cepacia Aliens

[anonymous]

Hey,

I was recently explaining to some people that I have cepacia and can't be with any other people with CF. They were telling me I should join a support group, and I explained as best I could that CFers generally are told not to be around each other, but with cepacia definately to not be with each other. I can't explain the expression on their faces. They were fascinated! I swear they thought we are supernatural aliens or something.
Anyone have any good cepacia/quarantine stories?
I know a few teenage hospital trysts...

christian

 

[Diane]

Well when i was first diagnosed with cepacia , i was in the process of finding a primary care physician closer to my home. I hate the idea of having to have a primary care physician give me "permission" to see my cf doctor but thats a whole other topic. Anyway i found one around the block to where i lived and went for my first visit. I was so happy to have one so close to me so it would be easier to pick up my referrals when i needed to go to my cf center. While i was there i noticed when i was in the one examining room the nurses would go by and make sure to look at me. I kind of felt they all wanted to see the cf patient they never had before. But what got me was when the doctor came in and read my chart and said are you sure they said you have cepacia? Cepacia is an "old" infection and nobody gets that anymore. And i told him i was positive, and he said maybe i heard it wrong when my doctor diagnosed it. I told him i guarantee it was cepacia because i just had spent two weeks in the hospital being treated for it . He still seemed skeptical and i explained to him about cf and how we can get all kinds of super infections because of our lungs being breeding grounds for bacteria, Needless to say i never went back to him . I hated to think this guy who knows NOTHING AT ALL about cf was going to be in charge of when i get to see my cf doctor.

 

[JazzysMom]

oh Diane.....its so good he wasnt your only health care provider! <img src="i/expressions/face-icon-small-frown.gif" border="0">

 

[Faust]

I personally wouldn't date/marry another CF'r, but I wouldn't have any issue with casual interaction.

 

[anonymous]

My son likes to refer to have Cepacia like being the "Human gerbil in the little ball". He will comment when we go places "Here comes bubble boy". I think it is his way to deal with it.
Even doctors at his old hospital treated him like he had the plague. Thank god we have a wonderful doctor and new hospital that does their best to treat him wonderfully.
Michelle

 

[Allie]

haha...Ry used to say that Cepacia patients were the untouchables of the Cf world. Like Diane's experience, the goal is to protect everyone else from you..and not so much to protect you. It's irritating. <img src="i/expressions/face-icon-small-tongue.gif" border="0">

 

[JustDucky]

I know what you mean...I went to the CF clinic today, it wasn't the usual day that other CF'ers are seen because of my cepacia. I am masked immediately and escorted to a room just as quickly. I understand that it is a nasty bug, but sometimes it saddens me that I can't see some friends because of the cepacia. Does kind of feel like a "girl in a bubble". Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hey,
When I was about 16 in-patient, they were just starting to get really strict with infection control. I had cepacia, too. I was next door to this girl with CF and cepacia. We became good friends though we were constantly getting in trouble with the nurses for talking. One night, she came to my room and we were talking, and the doctor was on her way down the hall. The nurse was nice enough to warn us, but we didn't have time to get out. She hid in the bathroom shower while my doc sat on my bed and lectured me about quarantine. It was great!! We had so much fun back then. Racing down the halls on IV polls. Good times.

Christian