Due to go to CF Clinic next week -- haven't been for almost a year because they have all the CF patients sit in a waiting room. They claim we're all safe 'cuz they haven't had any cepacia cases; however, there are still other bugs we should worry about, plus I do know of someone who was awaiting a transplant who just died due to complication of cepacia.

The doctor assured us that we can have a choice if we want to be assigned our own room, vs. hanging out in the waiting room the "visit" with other cf families. We're planning to have DH and DS wait in the lobby until we are assigned a room, but I'm still just worried sick abouat all this.

At our hospital, they just made it policy for anybody testing positive with cepacia or pseudomonas to wear face masks while in any part of the clinic. Could you possibly take masks to wear? I understand your concern and wish you the best.

I called to verify that we'll get our own room and was told "yes everyone gets their own room now 'cuz they're all contagious" Still have to trek to the 3rd floor, but don't want to take the elevator or hang out in the waiting room until we get our room assignment. We'll try the mask and I'll throw a blanket over his head if need be. The other thing I'm going to really pay attention to is handwashing. Most everyone washes their hands or uses antibacterial foam when they enter the room, but still need to be vigilant.

Friday we took our Grandaughter to the Doctor. We are new to CF our Grandchild was just diagnosed in November. After we left, I started thinking about all the people in the waiting room. Coughing etc. There was a boy in there who sounded terrible. I think they may have put us in the same examing room that he was in. I worried and worried about it. I do not think the Doctors office is being careful. I am not sure how to handle this situation, nor do I fully understand about pseudomonas or cepacia. It seems to me that there would still be germs in the examing rooms. They are so small and they keep the door shut. :eek:

Were you at a CF clinic or a regular clinic? Regular clinic I'm not as concerned about because it's the CFers bugs that worry me, but I still worry. I make sure to wipe off ds' hands after he touches things in the clinic -- I use wipes and the antibacterial foam the have.

Being around other CFers is just plain scary and doctors SHOULD know better 'cuz of the risk of bugs.

It is a regular clinic. But the Dr. flies in once a month and sees a whole bunch of CF patients from this area. So there were several CF kids in the office. I am not sure what to do. We can see the Dr. at this clinic which is two hours away or drive 5 hours and go to his base clinic where I think that they try to schedule the kids where they are not all there at once. It is the pits!!!

DH and I just decided it wasn't worth risking DS' health or lung function by attending the local "cattle call" CF clinic. We thought it'd be a good idea to get to know the local doctors in case we had a problem, but if they didn't change the way they handled the waiting area, etc. there was no way we were going to continue to attend. We also go to an accredited CF clinic about 4 hours drive away every 4 months.

The local clinic DID change their policies after a doctor attended the annual CF conference. So we attended shortly afterwards. Arrived at the clinic -- we were the only family in the waiting room and we were wisked away to a private room. I still have a couple of concerns -- I swear I constantly have to remind doctors, etc. to WASH their hands before touching our child. Also, we all ended up at the lab and xray at the same time...

Our main concern is cepacia -- a horrible nasty bug that destroy lung function, is very very contagious to CFers and there are only very few transplant centers that even consider doing lung tx on patients with CF. Our doctors swear there haven't been any local cases, but I know of a local person who did have it and died awaiting a transplant. This person may have switched to the regional accredited cf clinic while awaiting transplant and may have picked it up there.

I spoke with a local mom who goes to an accredited CF clinic and hospital and said she was SHOCKED when they had a bunch of cf children playing together in the waiting room. I've also heard that while in the hospital, a lot of times CF patients go visting and hang out in eachothers rooms, so that could very well be where the cepacia came from in the case I referred to before.

The important thing is to keep your child/grandchild safe. Who cares if you think you look silly -- a lot of parents make their children wear masks, bring along their own cleaning supplies and wipe thiings down and wash hands frequently