Got the boot from BABY CF CLINIC DAY

Keepercjr · Jul 21, 2011

Wow! I was out of town when this thread started so I didn't see it until today. I go to the adult clinic at UCSF (san francisco). They have CF clinic twice a month though the doctors seem to see ppl with other problems at the same time. We wait in a communal waiting area but are pretty soon called into a room. Oh before our own room we are taken into the little room that they do the temp, pulse ox and blood pressure. The only person gowned and masked is the person administering the PFTs. And that is a relatively new change. The doctors and other specialists go room to room to see the patients. There is a sink in each room as well as antibacterial stuff everywhere.

I have never felt unsafe and do take advantage of the antibacterial gel. Maybe it is a product of me growing up in more lax times? Like when CF patients shared a room in the hospital. And I attended CF camp till 2004 (I am currently multi resistant so can't go anymore).

Keepercjr · Jul 21, 2011

Wow! I was out of town when this thread started so I didn't see it until today. I go to the adult clinic at UCSF (san francisco). They have CF clinic twice a month though the doctors seem to see ppl with other problems at the same time. We wait in a communal waiting area but are pretty soon called into a room. Oh before our own room we are taken into the little room that they do the temp, pulse ox and blood pressure. The only person gowned and masked is the person administering the PFTs. And that is a relatively new change. The doctors and other specialists go room to room to see the patients. There is a sink in each room as well as antibacterial stuff everywhere.
 
 I have never felt unsafe and do take advantage of the antibacterial gel. Maybe it is a product of me growing up in more lax times? Like when CF patients shared a room in the hospital. And I attended CF camp till 2004 (I am currently multi resistant so can't go anymore).

ymikhale · Jul 25, 2011

I always have my dd wear a FFP2 mask, the one that protects HER from outside bugs. Our clinic asks (not very insistently) to wear regular masks, but they protect other people from my dd's bugs more than they protect her. I also always ask for the first appointment and sit at the very end of the hall far from any other kids. I never let my dd use common toys and wash all her clothes once we get back home.

ymikhale · Jul 25, 2011

I always have my dd wear a FFP2 mask, the one that protects HER from outside bugs. Our clinic asks (not very insistently) to wear regular masks, but they protect other people from my dd's bugs more than they protect her. I also always ask for the first appointment and sit at the very end of the hall far from any other kids. I never let my dd use common toys and wash all her clothes once we get back home.

ymikhale · Jul 25, 2011

I always have my dd wear a FFP2 mask, the one that protects HER from outside bugs. Our clinic asks (not very insistently) to wear regular masks, but they protect other people from my dd's bugs more than they protect her. I also always ask for the first appointment and sit at the very end of the hall far from any other kids. I never let my dd use common toys and wash all her clothes once we get back home.

cindylou · Jul 26, 2011

Wow - I'm another one who has not had clinics be THAT careful! Both clinics I've been to in the last few years (Duke and the University of Utah) provide masks if you ask for them, but don't require you to wear them. I've only worn them at times where I'm feeling particularly nervous about bugs or compromised. I do wait in a shared waiting room, but there's usually only 3-4 people in it tops at any one time, and it's nearly ALWAYS old people (i.e. not CFers). As far as I know, they stagger the appointment times so that no two CFers will be in the room at one time. I got to an appointment really late a few months ago and that was the first time I've ever seen anyone young and skinny enough to have been a CF patient. I've never had anyone come gowned and masked to my exam room, either - at Duke that was the protocol while you were in the hospital, but not at the clinic. At the U that is only the protocol in hospital if you are culturing resistant bugs.

cindylou · Jul 26, 2011

Wow - I'm another one who has not had clinics be THAT careful! Both clinics I've been to in the last few years (Duke and the University of Utah) provide masks if you ask for them, but don't require you to wear them. I've only worn them at times where I'm feeling particularly nervous about bugs or compromised. I do wait in a shared waiting room, but there's usually only 3-4 people in it tops at any one time, and it's nearly ALWAYS old people (i.e. not CFers). As far as I know, they stagger the appointment times so that no two CFers will be in the room at one time. I got to an appointment really late a few months ago and that was the first time I've ever seen anyone young and skinny enough to have been a CF patient. I've never had anyone come gowned and masked to my exam room, either - at Duke that was the protocol while you were in the hospital, but not at the clinic. At the U that is only the protocol in hospital if you are culturing resistant bugs.

cindylou · Jul 26, 2011

Wow - I'm another one who has not had clinics be THAT careful! Both clinics I've been to in the last few years (Duke and the University of Utah) provide masks if you ask for them, but don't require you to wear them. I've only worn them at times where I'm feeling particularly nervous about bugs or compromised. I do wait in a shared waiting room, but there's usually only 3-4 people in it tops at any one time, and it's nearly ALWAYS old people (i.e. not CFers). As far as I know, they stagger the appointment times so that no two CFers will be in the room at one time. I got to an appointment really late a few months ago and that was the first time I've ever seen anyone young and skinny enough to have been a CF patient. I've never had anyone come gowned and masked to my exam room, either - at Duke that was the protocol while you were in the hospital, but not at the clinic. At the U that is only the protocol in hospital if you are culturing resistant bugs.

cfpatience · Aug 10, 2011

I just happened to be browsing on the site tonight and noticed this post. Wow. I can't believe the differences in clinics. I have been taking my son to the same clinic for 8 years now and we have never worn masks and neither has any of the staff. There are times when those coming in to see him don't even wash their hands. Maybe my son picked up his PA from the clinic. We always stay in the same room the whole time except for getting weight and height and using the bathroom, the same bathroom as other cf patients use. I am kinda feeling a little sick over this right now.

cfpatience · Aug 10, 2011

I just happened to be browsing on the site tonight and noticed this post. Wow. I can't believe the differences in clinics. I have been taking my son to the same clinic for 8 years now and we have never worn masks and neither has any of the staff. There are times when those coming in to see him don't even wash their hands. Maybe my son picked up his PA from the clinic. We always stay in the same room the whole time except for getting weight and height and using the bathroom, the same bathroom as other cf patients use. I am kinda feeling a little sick over this right now.

cfpatience · Aug 10, 2011

I just happened to be browsing on the site tonight and noticed this post. Wow. I can't believe the differences in clinics. I have been taking my son to the same clinic for 8 years now and we have never worn masks and neither has any of the staff. There are times when those coming in to see him don't even wash their hands. Maybe my son picked up his PA from the clinic. We always stay in the same room the whole time except for getting weight and height and using the bathroom, the same bathroom as other cf patients use. I am kinda feeling a little sick over this right now.

tarheel · Aug 10, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Keepercjr Wow! I was out of town when this thread started so I didn't see it until today. I go to the adult clinic at UCSF (san francisco). They have CF clinic twice a month though the doctors seem to see ppl with other problems at the same time. We wait in a communal waiting area but are pretty soon called into a room. Oh before our own room we are taken into the little room that they do the temp, pulse ox and blood pressure. The only person gowned and masked is the person administering the PFTs. And that is a relatively new change. The doctors and other specialists go room to room to see the patients. There is a sink in each room as well as antibacterial stuff everywhere. I have never felt unsafe and do take advantage of the antibacterial gel. Maybe it is a product of me growing up in more lax times? Like when CF patients shared a room in the hospital. And I attended CF camp till 2004 (I am currently multi resistant so can't go anymore).</end quote></div> 
 
Anti-Bacterial gel does not kill gram negative bacteria. 
So anything anti-bacterial will protect you from some things, but not others. 
I think this is one of the negatives of having CF clinics. The positives are that you are able to develop "CF specialists" who have a pretty good idea of the disease. But on the downside you concentrate all these germs in one place, and hospital cleaning staff is SO uneducated as to the importance of doing their job. Even one nurse slipping up on wiping one countertop can lead to someone culturing Cepacia. (Perhaps overdramatic...)
 but I would reccomend reading "Better"- A surgeon's notes on performance about all these questions. Then ask yourself again. Is what your center is doing enough? For my small rinky-dink so called "clinic" in DE I decided the answer was HELL NO.

tarheel · Aug 10, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Keepercjr Wow! I was out of town when this thread started so I didn't see it until today. I go to the adult clinic at UCSF (san francisco). They have CF clinic twice a month though the doctors seem to see ppl with other problems at the same time. We wait in a communal waiting area but are pretty soon called into a room. Oh before our own room we are taken into the little room that they do the temp, pulse ox and blood pressure. The only person gowned and masked is the person administering the PFTs. And that is a relatively new change. The doctors and other specialists go room to room to see the patients. There is a sink in each room as well as antibacterial stuff everywhere. I have never felt unsafe and do take advantage of the antibacterial gel. Maybe it is a product of me growing up in more lax times? Like when CF patients shared a room in the hospital. And I attended CF camp till 2004 (I am currently multi resistant so can't go anymore).</end quote> 

Anti-Bacterial gel does not kill gram negative bacteria. 
So anything anti-bacterial will protect you from some things, but not others. 
I think this is one of the negatives of having CF clinics. The positives are that you are able to develop "CF specialists" who have a pretty good idea of the disease. But on the downside you concentrate all these germs in one place, and hospital cleaning staff is SO uneducated as to the importance of doing their job. Even one nurse slipping up on wiping one countertop can lead to someone culturing Cepacia. (Perhaps overdramatic...)
but I would reccomend reading "Better"- A surgeon's notes on performance about all these questions. Then ask yourself again. Is what your center is doing enough? For my small rinky-dink so called "clinic" in DE I decided the answer was HELL NO.

tarheel · Aug 10, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Keepercjr Wow! I was out of town when this thread started so I didn't see it until today. I go to the adult clinic at UCSF (san francisco). They have CF clinic twice a month though the doctors seem to see ppl with other problems at the same time. We wait in a communal waiting area but are pretty soon called into a room. Oh before our own room we are taken into the little room that they do the temp, pulse ox and blood pressure. The only person gowned and masked is the person administering the PFTs. And that is a relatively new change. The doctors and other specialists go room to room to see the patients. There is a sink in each room as well as antibacterial stuff everywhere. I have never felt unsafe and do take advantage of the antibacterial gel. Maybe it is a product of me growing up in more lax times? Like when CF patients shared a room in the hospital. And I attended CF camp till 2004 (I am currently multi resistant so can't go anymore).</end quote> 

Anti-Bacterial gel does not kill gram negative bacteria. 
So anything anti-bacterial will protect you from some things, but not others. 
I think this is one of the negatives of having CF clinics. The positives are that you are able to develop "CF specialists" who have a pretty good idea of the disease. But on the downside you concentrate all these germs in one place, and hospital cleaning staff is SO uneducated as to the importance of doing their job. Even one nurse slipping up on wiping one countertop can lead to someone culturing Cepacia. (Perhaps overdramatic...)
but I would reccomend reading "Better"- A surgeon's notes on performance about all these questions. Then ask yourself again. Is what your center is doing enough? For my small rinky-dink so called "clinic" in DE I decided the answer was HELL NO.

Hardak · Aug 11, 2011

Here is the thing to remember on this one. the older a CF patent gets the more likely they are to culture something nasty. Like wise most things a CF patient will grow, don't live long out side of the body. Different clinics do have different rules, generally tho the younger the patent the more likely its protecting them from somebody else, the older.. its the other way around.

Was likely about 22-23 years ago was the last time a CF camp was held. There is also little to no hard data supporting the idea that a CF patent can inadvertently pass a microbe from one to the next. In what one would consider casual adult/semi adult like behavior. Granted where your dealing with kids putting things in there mouths and licking random objects that's another matter.

Some one commented on the anti-bacterial gel's, while these are a good tool, they shouldn't be used in replacement of a good hand washing with soap and water.

Keith

Hardak · Aug 11, 2011

Here is the thing to remember on this one. the older a CF patent gets the more likely they are to culture something nasty. Like wise most things a CF patient will grow, don't live long out side of the body. Different clinics do have different rules, generally tho the younger the patent the more likely its protecting them from somebody else, the older.. its the other way around.

Was likely about 22-23 years ago was the last time a CF camp was held. There is also little to no hard data supporting the idea that a CF patent can inadvertently pass a microbe from one to the next. In what one would consider casual adult/semi adult like behavior. Granted where your dealing with kids putting things in there mouths and licking random objects that's another matter.

Some one commented on the anti-bacterial gel's, while these are a good tool, they shouldn't be used in replacement of a good hand washing with soap and water.

Keith

Hardak · Aug 11, 2011

Here is the thing to remember on this one. the older a CF patent gets the more likely they are to culture something nasty. Like wise most things a CF patient will grow, don't live long out side of the body. Different clinics do have different rules, generally tho the younger the patent the more likely its protecting them from somebody else, the older.. its the other way around.
 
 Was likely about 22-23 years ago was the last time a CF camp was held. There is also little to no hard data supporting the idea that a CF patent can inadvertently pass a microbe from one to the next. In what one would consider casual adult/semi adult like behavior. Granted where your dealing with kids putting things in there mouths and licking random objects that's another matter.
 
 Some one commented on the anti-bacterial gel's, while these are a good tool, they shouldn't be used in replacement of a good hand washing with soap and water.
 
 Keith

BarbaraW · Aug 12, 2011

At our clinic we are brought into a room right away. They do height and weight in the room, someone comes in gowned to do ttheir PFTs, then the nurse comes in gowned to do cultures, then the doctor comes in gowned for the appointment. If they need x-rays or whatever, when we go down to radiology, we are also put in a room right away and everyone is gowned.
 
We have been to the ER when DD broke her arm, and they would not let her wait in the ER waiting room. She was bumped ahead of everyone.
 
If for some reason they do not have a room available - only twice - they ask us to wait somewhere else, like the lobby, and call me on my cell when they are ready for them.
 
Our appointments usually last 4 or 5 hours, but its for two kids.

BarbaraW · Aug 12, 2011

At our clinic we are brought into a room right away. They do height and weight in the room, someone comes in gowned to do ttheir PFTs, then the nurse comes in gowned to do cultures, then the doctor comes in gowned for the appointment. If they need x-rays or whatever, when we go down to radiology, we are also put in a room right away and everyone is gowned.

We have been to the ER when DD broke her arm, and they would not let her wait in the ER waiting room. She was bumped ahead of everyone.

If for some reason they do not have a room available - only twice - they ask us to wait somewhere else, like the lobby, and call me on my cell when they are ready for them.

Our appointments usually last 4 or 5 hours, but its for two kids.

BarbaraW · Aug 12, 2011

At our clinic we are brought into a room right away. They do height and weight in the room, someone comes in gowned to do ttheir PFTs, then the nurse comes in gowned to do cultures, then the doctor comes in gowned for the appointment. If they need x-rays or whatever, when we go down to radiology, we are also put in a room right away and everyone is gowned.

We have been to the ER when DD broke her arm, and they would not let her wait in the ER waiting room. She was bumped ahead of everyone.

If for some reason they do not have a room available - only twice - they ask us to wait somewhere else, like the lobby, and call me on my cell when they are ready for them.

Our appointments usually last 4 or 5 hours, but its for two kids.

Got the boot from BABY CF CLINIC DAY

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