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Is it safe for cfer's to attend the walk-a thons
- Thread starter regina65
- Start date
K
Keepercjr
Guest
well we just had our yesterday and there were at least 5 CFers there (me included). It is an open air environment and we don't really intermingle much. In fact, till a few years ago I don't know who had CF (except 1 friend of mine who had a transplant 11 years ago). This year I briefly chatted with a 9yo girl who was SO excited to meet someone else with CF, caught up with my transplant friend for a while, and spoke maybe 1 minute to a CF teen about my port. Otherwise everyone just stays with their respective groups. Oh and nobody there would know (or knew) that I have CF except that the lady from the CF foundation asked me to speak briefly. The peds CF clinic nurses attend every year as well as the child life specialist - and each year they say they are so happy to see me - so it appears they don't see a problem.
I wouldn't go if I had cepacia or MRSA
I wouldn't go if I had cepacia or MRSA
K
Keepercjr
Guest
well we just had our yesterday and there were at least 5 CFers there (me included). It is an open air environment and we don't really intermingle much. In fact, till a few years ago I don't know who had CF (except 1 friend of mine who had a transplant 11 years ago). This year I briefly chatted with a 9yo girl who was SO excited to meet someone else with CF, caught up with my transplant friend for a while, and spoke maybe 1 minute to a CF teen about my port. Otherwise everyone just stays with their respective groups. Oh and nobody there would know (or knew) that I have CF except that the lady from the CF foundation asked me to speak briefly. The peds CF clinic nurses attend every year as well as the child life specialist - and each year they say they are so happy to see me - so it appears they don't see a problem.
I wouldn't go if I had cepacia or MRSA
I wouldn't go if I had cepacia or MRSA
K
Keepercjr
Guest
well we just had our yesterday and there were at least 5 CFers there (me included). It is an open air environment and we don't really intermingle much. In fact, till a few years ago I don't know who had CF (except 1 friend of mine who had a transplant 11 years ago). This year I briefly chatted with a 9yo girl who was SO excited to meet someone else with CF, caught up with my transplant friend for a while, and spoke maybe 1 minute to a CF teen about my port. Otherwise everyone just stays with their respective groups. Oh and nobody there would know (or knew) that I have CF except that the lady from the CF foundation asked me to speak briefly. The peds CF clinic nurses attend every year as well as the child life specialist - and each year they say they are so happy to see me - so it appears they don't see a problem.
I wouldn't go if I had cepacia or MRSA
I wouldn't go if I had cepacia or MRSA
K
Keepercjr
Guest
well we just had our yesterday and there were at least 5 CFers there (me included). It is an open air environment and we don't really intermingle much. In fact, till a few years ago I don't know who had CF (except 1 friend of mine who had a transplant 11 years ago). This year I briefly chatted with a 9yo girl who was SO excited to meet someone else with CF, caught up with my transplant friend for a while, and spoke maybe 1 minute to a CF teen about my port. Otherwise everyone just stays with their respective groups. Oh and nobody there would know (or knew) that I have CF except that the lady from the CF foundation asked me to speak briefly. The peds CF clinic nurses attend every year as well as the child life specialist - and each year they say they are so happy to see me - so it appears they don't see a problem.
I wouldn't go if I had cepacia or MRSA
I wouldn't go if I had cepacia or MRSA
K
Keepercjr
Guest
well we just had our yesterday and there were at least 5 CFers there (me included). It is an open air environment and we don't really intermingle much. In fact, till a few years ago I don't know who had CF (except 1 friend of mine who had a transplant 11 years ago). This year I briefly chatted with a 9yo girl who was SO excited to meet someone else with CF, caught up with my transplant friend for a while, and spoke maybe 1 minute to a CF teen about my port. Otherwise everyone just stays with their respective groups. Oh and nobody there would know (or knew) that I have CF except that the lady from the CF foundation asked me to speak briefly. The peds CF clinic nurses attend every year as well as the child life specialist - and each year they say they are so happy to see me - so it appears they don't see a problem.
<br />
<br />I wouldn't go if I had cepacia or MRSA
<br />
<br />I wouldn't go if I had cepacia or MRSA
BaylorCrew07
New member
I've attended some Great Strides events...3 I think? I don't get in contact with other CFers or anything though, just stay in my little group with my friends/family.
However, at the last one (My CF doc & her team happened to be there too), someone had the great idea of getting all the CFers together for a group photo. They even said the "squeeze in; get closer" bit. WHO DOES THAT?! I think my doc almost had a heart attack. lol
However, at the last one (My CF doc & her team happened to be there too), someone had the great idea of getting all the CFers together for a group photo. They even said the "squeeze in; get closer" bit. WHO DOES THAT?! I think my doc almost had a heart attack. lol
BaylorCrew07
New member
I've attended some Great Strides events...3 I think? I don't get in contact with other CFers or anything though, just stay in my little group with my friends/family.
However, at the last one (My CF doc & her team happened to be there too), someone had the great idea of getting all the CFers together for a group photo. They even said the "squeeze in; get closer" bit. WHO DOES THAT?! I think my doc almost had a heart attack. lol
However, at the last one (My CF doc & her team happened to be there too), someone had the great idea of getting all the CFers together for a group photo. They even said the "squeeze in; get closer" bit. WHO DOES THAT?! I think my doc almost had a heart attack. lol
BaylorCrew07
New member
I've attended some Great Strides events...3 I think? I don't get in contact with other CFers or anything though, just stay in my little group with my friends/family.
However, at the last one (My CF doc & her team happened to be there too), someone had the great idea of getting all the CFers together for a group photo. They even said the "squeeze in; get closer" bit. WHO DOES THAT?! I think my doc almost had a heart attack. lol
However, at the last one (My CF doc & her team happened to be there too), someone had the great idea of getting all the CFers together for a group photo. They even said the "squeeze in; get closer" bit. WHO DOES THAT?! I think my doc almost had a heart attack. lol
BaylorCrew07
New member
I've attended some Great Strides events...3 I think? I don't get in contact with other CFers or anything though, just stay in my little group with my friends/family.
However, at the last one (My CF doc & her team happened to be there too), someone had the great idea of getting all the CFers together for a group photo. They even said the "squeeze in; get closer" bit. WHO DOES THAT?! I think my doc almost had a heart attack. lol
However, at the last one (My CF doc & her team happened to be there too), someone had the great idea of getting all the CFers together for a group photo. They even said the "squeeze in; get closer" bit. WHO DOES THAT?! I think my doc almost had a heart attack. lol
BaylorCrew07
New member
I've attended some Great Strides events...3 I think? I don't get in contact with other CFers or anything though, just stay in my little group with my friends/family.
<br />
<br />However, at the last one (My CF doc & her team happened to be there too), someone had the great idea of getting all the CFers together for a group photo. They even said the "squeeze in; get closer" bit. WHO DOES THAT?! I think my doc almost had a heart attack. lol
<br />
<br />However, at the last one (My CF doc & her team happened to be there too), someone had the great idea of getting all the CFers together for a group photo. They even said the "squeeze in; get closer" bit. WHO DOES THAT?! I think my doc almost had a heart attack. lol
theLostMiler
New member
I was the only cf'er in my small town back when someone did one while I was in high school.... that was when I found out about Great Strides.
Last year, I tested positive for b. cepecia so my family all went last year though and there were only 2 other cf'ers... a little 4 year old and a 19 year old.
I think that I would be nervous for sure, but you are in the open (with wind and breezes and 3 feet) and as long as you didnt touch other food and such it would be fun, internet is great but to actually see a live CF'er makes it even more real that you are not alone.
I also have the MA and before when it was just m. cholenea I actually attended 2 "informative" conferences put on my old ped doctor here in my college town... knowing what I know now, I would have never went or at least wore a mask... yes we were in a room, w/o masks!! So dumb, I wasnt very educated on CF and was aware of bug transfer but trusted my doc but it doesnt make any sense now. I actually feel guilty, b/c there were little kids there, and I hope an pray to God I didnt not give them anything... so many mistakes. I did try to sit as far away from anyone though... I just didnt know that what the potential I had with my bug.
At Stanford they dont let anywone w/ mrsa or b. cep go or any other drug resistant bacterias... they are more strict w/ cf conferences and such which I would appreciate if I could go.
Oh and I do get bummed though that I cant go to my local GS, last year my sister was the chairman of our town and so I helped get it ready but couldnt really see how it turned out except for pictures. This year i am even more involved but am laying out the course, so I feel like I am contributing in a bigger way.
Last year, I tested positive for b. cepecia so my family all went last year though and there were only 2 other cf'ers... a little 4 year old and a 19 year old.
I think that I would be nervous for sure, but you are in the open (with wind and breezes and 3 feet) and as long as you didnt touch other food and such it would be fun, internet is great but to actually see a live CF'er makes it even more real that you are not alone.
I also have the MA and before when it was just m. cholenea I actually attended 2 "informative" conferences put on my old ped doctor here in my college town... knowing what I know now, I would have never went or at least wore a mask... yes we were in a room, w/o masks!! So dumb, I wasnt very educated on CF and was aware of bug transfer but trusted my doc but it doesnt make any sense now. I actually feel guilty, b/c there were little kids there, and I hope an pray to God I didnt not give them anything... so many mistakes. I did try to sit as far away from anyone though... I just didnt know that what the potential I had with my bug.
At Stanford they dont let anywone w/ mrsa or b. cep go or any other drug resistant bacterias... they are more strict w/ cf conferences and such which I would appreciate if I could go.
Oh and I do get bummed though that I cant go to my local GS, last year my sister was the chairman of our town and so I helped get it ready but couldnt really see how it turned out except for pictures. This year i am even more involved but am laying out the course, so I feel like I am contributing in a bigger way.
theLostMiler
New member
I was the only cf'er in my small town back when someone did one while I was in high school.... that was when I found out about Great Strides.
Last year, I tested positive for b. cepecia so my family all went last year though and there were only 2 other cf'ers... a little 4 year old and a 19 year old.
I think that I would be nervous for sure, but you are in the open (with wind and breezes and 3 feet) and as long as you didnt touch other food and such it would be fun, internet is great but to actually see a live CF'er makes it even more real that you are not alone.
I also have the MA and before when it was just m. cholenea I actually attended 2 "informative" conferences put on my old ped doctor here in my college town... knowing what I know now, I would have never went or at least wore a mask... yes we were in a room, w/o masks!! So dumb, I wasnt very educated on CF and was aware of bug transfer but trusted my doc but it doesnt make any sense now. I actually feel guilty, b/c there were little kids there, and I hope an pray to God I didnt not give them anything... so many mistakes. I did try to sit as far away from anyone though... I just didnt know that what the potential I had with my bug.
At Stanford they dont let anywone w/ mrsa or b. cep go or any other drug resistant bacterias... they are more strict w/ cf conferences and such which I would appreciate if I could go.
Oh and I do get bummed though that I cant go to my local GS, last year my sister was the chairman of our town and so I helped get it ready but couldnt really see how it turned out except for pictures. This year i am even more involved but am laying out the course, so I feel like I am contributing in a bigger way.
Last year, I tested positive for b. cepecia so my family all went last year though and there were only 2 other cf'ers... a little 4 year old and a 19 year old.
I think that I would be nervous for sure, but you are in the open (with wind and breezes and 3 feet) and as long as you didnt touch other food and such it would be fun, internet is great but to actually see a live CF'er makes it even more real that you are not alone.
I also have the MA and before when it was just m. cholenea I actually attended 2 "informative" conferences put on my old ped doctor here in my college town... knowing what I know now, I would have never went or at least wore a mask... yes we were in a room, w/o masks!! So dumb, I wasnt very educated on CF and was aware of bug transfer but trusted my doc but it doesnt make any sense now. I actually feel guilty, b/c there were little kids there, and I hope an pray to God I didnt not give them anything... so many mistakes. I did try to sit as far away from anyone though... I just didnt know that what the potential I had with my bug.
At Stanford they dont let anywone w/ mrsa or b. cep go or any other drug resistant bacterias... they are more strict w/ cf conferences and such which I would appreciate if I could go.
Oh and I do get bummed though that I cant go to my local GS, last year my sister was the chairman of our town and so I helped get it ready but couldnt really see how it turned out except for pictures. This year i am even more involved but am laying out the course, so I feel like I am contributing in a bigger way.
theLostMiler
New member
I was the only cf'er in my small town back when someone did one while I was in high school.... that was when I found out about Great Strides.
Last year, I tested positive for b. cepecia so my family all went last year though and there were only 2 other cf'ers... a little 4 year old and a 19 year old.
I think that I would be nervous for sure, but you are in the open (with wind and breezes and 3 feet) and as long as you didnt touch other food and such it would be fun, internet is great but to actually see a live CF'er makes it even more real that you are not alone.
I also have the MA and before when it was just m. cholenea I actually attended 2 "informative" conferences put on my old ped doctor here in my college town... knowing what I know now, I would have never went or at least wore a mask... yes we were in a room, w/o masks!! So dumb, I wasnt very educated on CF and was aware of bug transfer but trusted my doc but it doesnt make any sense now. I actually feel guilty, b/c there were little kids there, and I hope an pray to God I didnt not give them anything... so many mistakes. I did try to sit as far away from anyone though... I just didnt know that what the potential I had with my bug.
At Stanford they dont let anywone w/ mrsa or b. cep go or any other drug resistant bacterias... they are more strict w/ cf conferences and such which I would appreciate if I could go.
Oh and I do get bummed though that I cant go to my local GS, last year my sister was the chairman of our town and so I helped get it ready but couldnt really see how it turned out except for pictures. This year i am even more involved but am laying out the course, so I feel like I am contributing in a bigger way.
Last year, I tested positive for b. cepecia so my family all went last year though and there were only 2 other cf'ers... a little 4 year old and a 19 year old.
I think that I would be nervous for sure, but you are in the open (with wind and breezes and 3 feet) and as long as you didnt touch other food and such it would be fun, internet is great but to actually see a live CF'er makes it even more real that you are not alone.
I also have the MA and before when it was just m. cholenea I actually attended 2 "informative" conferences put on my old ped doctor here in my college town... knowing what I know now, I would have never went or at least wore a mask... yes we were in a room, w/o masks!! So dumb, I wasnt very educated on CF and was aware of bug transfer but trusted my doc but it doesnt make any sense now. I actually feel guilty, b/c there were little kids there, and I hope an pray to God I didnt not give them anything... so many mistakes. I did try to sit as far away from anyone though... I just didnt know that what the potential I had with my bug.
At Stanford they dont let anywone w/ mrsa or b. cep go or any other drug resistant bacterias... they are more strict w/ cf conferences and such which I would appreciate if I could go.
Oh and I do get bummed though that I cant go to my local GS, last year my sister was the chairman of our town and so I helped get it ready but couldnt really see how it turned out except for pictures. This year i am even more involved but am laying out the course, so I feel like I am contributing in a bigger way.
theLostMiler
New member
I was the only cf'er in my small town back when someone did one while I was in high school.... that was when I found out about Great Strides.
Last year, I tested positive for b. cepecia so my family all went last year though and there were only 2 other cf'ers... a little 4 year old and a 19 year old.
I think that I would be nervous for sure, but you are in the open (with wind and breezes and 3 feet) and as long as you didnt touch other food and such it would be fun, internet is great but to actually see a live CF'er makes it even more real that you are not alone.
I also have the MA and before when it was just m. cholenea I actually attended 2 "informative" conferences put on my old ped doctor here in my college town... knowing what I know now, I would have never went or at least wore a mask... yes we were in a room, w/o masks!! So dumb, I wasnt very educated on CF and was aware of bug transfer but trusted my doc but it doesnt make any sense now. I actually feel guilty, b/c there were little kids there, and I hope an pray to God I didnt not give them anything... so many mistakes. I did try to sit as far away from anyone though... I just didnt know that what the potential I had with my bug.
At Stanford they dont let anywone w/ mrsa or b. cep go or any other drug resistant bacterias... they are more strict w/ cf conferences and such which I would appreciate if I could go.
Oh and I do get bummed though that I cant go to my local GS, last year my sister was the chairman of our town and so I helped get it ready but couldnt really see how it turned out except for pictures. This year i am even more involved but am laying out the course, so I feel like I am contributing in a bigger way.
Last year, I tested positive for b. cepecia so my family all went last year though and there were only 2 other cf'ers... a little 4 year old and a 19 year old.
I think that I would be nervous for sure, but you are in the open (with wind and breezes and 3 feet) and as long as you didnt touch other food and such it would be fun, internet is great but to actually see a live CF'er makes it even more real that you are not alone.
I also have the MA and before when it was just m. cholenea I actually attended 2 "informative" conferences put on my old ped doctor here in my college town... knowing what I know now, I would have never went or at least wore a mask... yes we were in a room, w/o masks!! So dumb, I wasnt very educated on CF and was aware of bug transfer but trusted my doc but it doesnt make any sense now. I actually feel guilty, b/c there were little kids there, and I hope an pray to God I didnt not give them anything... so many mistakes. I did try to sit as far away from anyone though... I just didnt know that what the potential I had with my bug.
At Stanford they dont let anywone w/ mrsa or b. cep go or any other drug resistant bacterias... they are more strict w/ cf conferences and such which I would appreciate if I could go.
Oh and I do get bummed though that I cant go to my local GS, last year my sister was the chairman of our town and so I helped get it ready but couldnt really see how it turned out except for pictures. This year i am even more involved but am laying out the course, so I feel like I am contributing in a bigger way.
theLostMiler
New member
I was the only cf'er in my small town back when someone did one while I was in high school.... that was when I found out about Great Strides.
<br />
<br />Last year, I tested positive for b. cepecia so my family all went last year though and there were only 2 other cf'ers... a little 4 year old and a 19 year old.
<br />
<br />I think that I would be nervous for sure, but you are in the open (with wind and breezes and 3 feet) and as long as you didnt touch other food and such it would be fun, internet is great but to actually see a live CF'er makes it even more real that you are not alone.
<br />
<br />I also have the MA and before when it was just m. cholenea I actually attended 2 "informative" conferences put on my old ped doctor here in my college town... knowing what I know now, I would have never went or at least wore a mask... yes we were in a room, w/o masks!! So dumb, I wasnt very educated on CF and was aware of bug transfer but trusted my doc but it doesnt make any sense now. I actually feel guilty, b/c there were little kids there, and I hope an pray to God I didnt not give them anything... so many mistakes. I did try to sit as far away from anyone though... I just didnt know that what the potential I had with my bug.
<br />
<br />At Stanford they dont let anywone w/ mrsa or b. cep go or any other drug resistant bacterias... they are more strict w/ cf conferences and such which I would appreciate if I could go.
<br />
<br />Oh and I do get bummed though that I cant go to my local GS, last year my sister was the chairman of our town and so I helped get it ready but couldnt really see how it turned out except for pictures. This year i am even more involved but am laying out the course, so I feel like I am contributing in a bigger way.
<br />
<br />
<br />
<br />Last year, I tested positive for b. cepecia so my family all went last year though and there were only 2 other cf'ers... a little 4 year old and a 19 year old.
<br />
<br />I think that I would be nervous for sure, but you are in the open (with wind and breezes and 3 feet) and as long as you didnt touch other food and such it would be fun, internet is great but to actually see a live CF'er makes it even more real that you are not alone.
<br />
<br />I also have the MA and before when it was just m. cholenea I actually attended 2 "informative" conferences put on my old ped doctor here in my college town... knowing what I know now, I would have never went or at least wore a mask... yes we were in a room, w/o masks!! So dumb, I wasnt very educated on CF and was aware of bug transfer but trusted my doc but it doesnt make any sense now. I actually feel guilty, b/c there were little kids there, and I hope an pray to God I didnt not give them anything... so many mistakes. I did try to sit as far away from anyone though... I just didnt know that what the potential I had with my bug.
<br />
<br />At Stanford they dont let anywone w/ mrsa or b. cep go or any other drug resistant bacterias... they are more strict w/ cf conferences and such which I would appreciate if I could go.
<br />
<br />Oh and I do get bummed though that I cant go to my local GS, last year my sister was the chairman of our town and so I helped get it ready but couldnt really see how it turned out except for pictures. This year i am even more involved but am laying out the course, so I feel like I am contributing in a bigger way.
<br />
<br />