clinic procedures

[anonymous]

After being around on these boards for a while, I have read about a lot of people who think they may have picked up pseudenomas or cepacias and other bugs too, from the hospitals and or their clinics. I am coming up on a clinic visit this winter (I go twice a year), the first since I joined this board, and so I am really concerned about "catching" a bug like these. As far as I know, my clinic doesn't separate people with bugs - though they might, seeing as I don't yet have any, maybe I just don't know about it. I can say I will be really peeved if I pick up something on a clinic visit. Does anyone know if the CF foundation has certain procedures in place for this that my clinic should be following, or precautions I can take? I am 28 and so far haven't cultured anything, and I'd rather not start now!
wanderlost 28 w/CF

 

[anonymous]

i'd say just wash your hands, make sure everyone who comes in washes thier hands and that all the equipment has been cleaned between patients, and that you get all new tubing etc. on your pft machines (which I am sure they do obviously). Just be aware and make sure everyone is clean, and thats the best you can do! I caught cepacia and my mom was the most paranoid mother around when it came to cleanliness, so who knows how i caught it. there is so much they dont know, but being hygenic doesnt hurt!

Caitlin

 

[anonymous]

We walked out of our CF Clinic appointment last summer because of concerns with spreading germs. They feel it's important for CFers and their families to interact. HELLO!? Teeny tiny crowded waiting room. Elbow to elbow. A TOY area!!!

We'd expressed concerns in the past that unless we were immediately placed in a private room, we wouldn't be staying. Their response -- well you shouldn't worry 'cuz you send DS to a daycare. We provided germ prevention info from the CF site and stanford's webside and were promised from now on patients could have a choice. Their own room or sit with everyone else. Showed up 15 minutes before the appointment and proceeded to wait half an hour in the waiting room We walked out.

 

[anonymous]

that is shocking. what clinic/hospital? germs from daycare ARE NOT the same as CF PATIENT germs!!!! ugh people can be so thick.

 

[JazzysMom]

The CF Foundation does have regulations that the accredited centers must go by. If they do not they can lose their accreditation. Its is difficult for a clinic to juggle this, but it can happen. My clinic sees Adults & Kids in the same office, but they have delegated days that patients with cepcia can be seen. Patients also are not to wait in the waiting room or even be in the same room like during check out. Before you are allowed to leave for the day, the staff makes sure the "coast is clear" to allow you to return to the waiting room & make your next appointment etc. Another is that all exam rooms have the santizing gell dispenser right outside the door for not only the staff, but the patients & you are not to touch it with your bare hands. This is a short cut version, but the point is there are guidelines!

 

[anonymous]

My CFC has us use hand gel when we first arrive and we wear a mask as soon as we get there & anytime we are in the halls, etc until we get into our room and then we can remove it. I understood these were guidelines set up by the CFF?
And Caitlin, as perfect as that would be, I think the hoses/tubing on the PFT machine are changed daily at my CFC. They claim the filter inside the disposible mouthpiece we use (& then toss) catches 99% of the germs from going into the tubing/machine.
I think Julie had mentioned she & Mark have them change the tubing, hoses, etc before he does his PFT and I think I will suggest the same next time I have one done. Julie, if you're reading this, how long does this process normally take and I'm sure it's something they don't like to do but what's the normal reaction when you ask them to do this?
And elbow to elbow in a waiting area is definately a no-no in my opinion unless masks are used.
Elle

 

[Alyssa]

We go to Children's Hospital in Seattle, WA. The staff there are excellent! We have never attended anywhere else but from some of the things I have read on other lists, I'd have to say they are doing things right -- we were taught to be cautious and the policies they have in place keep cross contamination in check. I am always amazed when I hear stories about other clinics doing things that would never happen here.

The waiting room is small so nobody with CF ever stays there -- we are given pagers and are free to go anywhere else in the hospital until they are ready to put us in a private room. Face masks are available at the waiting room, but we always pick one up at the very first door we enter.

Yes, everyone washes their hands or uses sanitizer the minute they walk in the room.

No, there is no encouragement for anyone to socialize -- only the parents at parent meetings -- no patients allowed to attend, but they are professionally video taped so anyone can get a copy and they are free! We have always been encouraged to follow the three foot rule with any coughing person but especially if you know they have cf. I know they have other guidelines for when patients are in the hospital, but so far we have not had to be admitted But I have heard other parents talk about "the rules" and such when it comes to some of the common areas for patients or things like getting the video game cart in your room and such.

Our doctor told us that people with cepatia come to clinic on a different day than the rest of the cf patients.

 

[anonymous]

I just wanted to move this topic up the ladder so that Julie may see my question in case she missed it.
Elle

 

[anonymous]

Hi,


When I go to clinic for a CF appointment, all CF'ers must wear masks. And depending what organism you have depends on what day you will be seen. Also, when admitted into the hosptal, patients with more harmful organisms are kept and contained to certain wings of the hospital. I was instructed not to make physical contact with anyone besides my sister with CF. My doctors told me that she and I are even contagious to each other. My hospital even discontinued all social events in which CF patients are together. Picnics, bowling, walks. They even discourage the CF Strides walk!

 

[anonymous]

We go to a small non-accredited CF clinic in North Dakota and they don't have any rules. In fact they enourage people to socialize. Too frightening. We just sit off in a hallway, away from everyone else, until our room is available. We go to an accredited clinic in the City about 250 miles away and have only run into another CFer once and we were introduced to them across the hall -- just waved and said hello. A friend of mine goes to the CF Clinic in Minneapolis and said they actually have a PLAY ROOM!!! for all the kids. Seemed kinda weird considering their supposed to be tops in the nation.