Attending a Great Strides walk

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iwantmypup

New member
Hi!

I was wondering, can you attend a Great Strides walk as a CF patient? I think somebody told me that if you cultured B. cepacia, that you can't, but otherwise you can, but I'm not sure.
There is one May 15th...a few days after I'm getting out of the hospital. If I am feeling well enough I'd love to go.

Thanks
 
I

iwantmypup

New member
Hi!

I was wondering, can you attend a Great Strides walk as a CF patient? I think somebody told me that if you cultured B. cepacia, that you can't, but otherwise you can, but I'm not sure.
There is one May 15th...a few days after I'm getting out of the hospital. If I am feeling well enough I'd love to go.

Thanks
 
I

iwantmypup

New member
Hi!
<br />
<br />I was wondering, can you attend a Great Strides walk as a CF patient? I think somebody told me that if you cultured B. cepacia, that you can't, but otherwise you can, but I'm not sure.
<br />There is one May 15th...a few days after I'm getting out of the hospital. If I am feeling well enough I'd love to go.
<br />
<br />Thanks
 
T

theLostMiler

New member
Yes cf'ers can go. The CFF has a policy that people who have cultured b. cep w/in the last 18-24 months (I think) cannot attend... that being said they also say that there is a possibility that cf'ers with b. cep can still end up being there and its kinda a "your choice" thing.

Up and coming policies for other CF things I have heard about are not allowing people who have also culutred MRSA and people who have cultured antibiotic resistant bacteria w/in the past 18 or 24 months... I think of it as, okay you know your bug has developed a bunch of resistances then you shouldnt go if you think other cf'ers will be there.


I was quite sad this year at mine b/c I put a lot of work into and I knew for sure (supposedly) one cf'er would be there and I have b. cep so I didnt go (i have thought about a mask and the 3+ foot rule but would feel horrible if I gave it away)... turns out the one cf'er didnt go but who knows, their could have been a new baby or something, you know?

I personally feel if you have the "typical" cf bugs its a great way to meet other cf'ers (standing far away) and get psyched up! I havent actually met any cf'ers once I figured out it wasnt the most ideal situation to be around each other... but mainly b/c I started getting b. cep.

I would like to hear if you decide to go and how you like it if you do go.
 
T

theLostMiler

New member
Yes cf'ers can go. The CFF has a policy that people who have cultured b. cep w/in the last 18-24 months (I think) cannot attend... that being said they also say that there is a possibility that cf'ers with b. cep can still end up being there and its kinda a "your choice" thing.

Up and coming policies for other CF things I have heard about are not allowing people who have also culutred MRSA and people who have cultured antibiotic resistant bacteria w/in the past 18 or 24 months... I think of it as, okay you know your bug has developed a bunch of resistances then you shouldnt go if you think other cf'ers will be there.


I was quite sad this year at mine b/c I put a lot of work into and I knew for sure (supposedly) one cf'er would be there and I have b. cep so I didnt go (i have thought about a mask and the 3+ foot rule but would feel horrible if I gave it away)... turns out the one cf'er didnt go but who knows, their could have been a new baby or something, you know?

I personally feel if you have the "typical" cf bugs its a great way to meet other cf'ers (standing far away) and get psyched up! I havent actually met any cf'ers once I figured out it wasnt the most ideal situation to be around each other... but mainly b/c I started getting b. cep.

I would like to hear if you decide to go and how you like it if you do go.
 
T

theLostMiler

New member
Yes cf'ers can go. The CFF has a policy that people who have cultured b. cep w/in the last 18-24 months (I think) cannot attend... that being said they also say that there is a possibility that cf'ers with b. cep can still end up being there and its kinda a "your choice" thing.
<br />
<br />Up and coming policies for other CF things I have heard about are not allowing people who have also culutred MRSA and people who have cultured antibiotic resistant bacteria w/in the past 18 or 24 months... I think of it as, okay you know your bug has developed a bunch of resistances then you shouldnt go if you think other cf'ers will be there.
<br />
<br />
<br />I was quite sad this year at mine b/c I put a lot of work into and I knew for sure (supposedly) one cf'er would be there and I have b. cep so I didnt go (i have thought about a mask and the 3+ foot rule but would feel horrible if I gave it away)... turns out the one cf'er didnt go but who knows, their could have been a new baby or something, you know?
<br />
<br />I personally feel if you have the "typical" cf bugs its a great way to meet other cf'ers (standing far away) and get psyched up! I havent actually met any cf'ers once I figured out it wasnt the most ideal situation to be around each other... but mainly b/c I started getting b. cep.
<br />
<br />I would like to hear if you decide to go and how you like it if you do go.
 
I

iwantmypup

New member
I just got out of the hospital and feel pretty good, so I am registering for it today.
I don't have B. cep, and haven't cultured anything non typical lately.
I really hope I don't get anything, should I wear a mask just in case?

theLostMiler, I'm sorry you couldn't go! that sucks. <img src="i/expressions/face-icon-small-sad.gif" border="0"> But yeah, better to be safe than sorry.
 
I

iwantmypup

New member
I just got out of the hospital and feel pretty good, so I am registering for it today.
I don't have B. cep, and haven't cultured anything non typical lately.
I really hope I don't get anything, should I wear a mask just in case?

theLostMiler, I'm sorry you couldn't go! that sucks. <img src="i/expressions/face-icon-small-sad.gif" border="0"> But yeah, better to be safe than sorry.
 
I

iwantmypup

New member
I just got out of the hospital and feel pretty good, so I am registering for it today.
<br />I don't have B. cep, and haven't cultured anything non typical lately.
<br />I really hope I don't get anything, should I wear a mask just in case?
<br />
<br />theLostMiler, I'm sorry you couldn't go! that sucks. <img src="i/expressions/face-icon-small-sad.gif" border="0"> But yeah, better to be safe than sorry.
 
I

izemmom

New member
Hi Ali -

I'm not a Cf'er, I'm a mom of one. I'd say, yes, wear a mask, and be prepared to keep your distance from others. Use sanitizer, don't eat food that isn't pre-wrapped...all the common sense things. Go and have fun, but use your head. I would think you'd be fine. Be prepared to change yor plans if you start feeling crummy!
 
I

izemmom

New member
Hi Ali -

I'm not a Cf'er, I'm a mom of one. I'd say, yes, wear a mask, and be prepared to keep your distance from others. Use sanitizer, don't eat food that isn't pre-wrapped...all the common sense things. Go and have fun, but use your head. I would think you'd be fine. Be prepared to change yor plans if you start feeling crummy!
 
I

izemmom

New member
Hi Ali -
<br />
<br />I'm not a Cf'er, I'm a mom of one. I'd say, yes, wear a mask, and be prepared to keep your distance from others. Use sanitizer, don't eat food that isn't pre-wrapped...all the common sense things. Go and have fun, but use your head. I would think you'd be fine. Be prepared to change yor plans if you start feeling crummy!
 
M

minimedic304

New member
I am a CF patient and I would go anyway....more than likely you are outside and not going to interact with Cf patients directly...plus I am not that firm of a believer that this bateria causes as many problems as the cff says...i think its more to CYA themselves.
 
M

minimedic304

New member
I am a CF patient and I would go anyway....more than likely you are outside and not going to interact with Cf patients directly...plus I am not that firm of a believer that this bateria causes as many problems as the cff says...i think its more to CYA themselves.
 
M

minimedic304

New member
I am a CF patient and I would go anyway....more than likely you are outside and not going to interact with Cf patients directly...plus I am not that firm of a believer that this bateria causes as many problems as the cff says...i think its more to CYA themselves.
 
K

Keepercjr

Guest
I have CF and I go to our local walks - I also run our raffle. I don't wear a mask though. It is an open air environment and everyone just kind of stays with their groups. I do say hi to a few others with CF that I know and only see once a year at the walk. This year I met a little 9yo girl who was SO excited to meet someone else with CF. They keep us so isolated from one another now in the hospital that the youngest generation doesn't have the sense of "community" that older generations had when everyone roomed with everyone else. I think for the kids it can feel really isolating and lonely - so meeting even just 1 other w/ CF was huge for her.
 
K

Keepercjr

Guest
I have CF and I go to our local walks - I also run our raffle. I don't wear a mask though. It is an open air environment and everyone just kind of stays with their groups. I do say hi to a few others with CF that I know and only see once a year at the walk. This year I met a little 9yo girl who was SO excited to meet someone else with CF. They keep us so isolated from one another now in the hospital that the youngest generation doesn't have the sense of "community" that older generations had when everyone roomed with everyone else. I think for the kids it can feel really isolating and lonely - so meeting even just 1 other w/ CF was huge for her.
 
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