Meeting others with CF?

[meggzzie]

Hmm well, I wouldn't recommend meeting other CFers in person. That's why there is such a massive CF online community - the risk of passing an infection is massive. Mellybean17 made a point - they USED to have cf camps - they closed them down as there is a bug called B. Cepacia which is pretty horrible for a CFer to have, which aparently spread fairly fast through the camps. Plus bugs like Pseudomonas, which I managed to get when I was 7 - in hospital they would group the CF kids together, in ward beds next to each other rather than cubicles. And thats how I ended up with Pseudomonas, so I've made a point to try and stay away from otehr CFers in person. I don't like the risk that either I could pass on Pseudomonas to them (or MRSA, which I've had but supposedly gotten rid of) or they could pass on a bug to me.

I suppose all you can do is have friends with CF on forums, CF sites or blogs or whatever. Everyday I wonder if i would actually be healthier right now if I'd been in a cubicle rather than a bed ward when I was 7.

I know I've just repeated everything that all the others have said, but I felt like putting in my own 2 cents. xx

 

[meggzzie]

Hmm well, I wouldn't recommend meeting other CFers in person. That's why there is such a massive CF online community - the risk of passing an infection is massive. Mellybean17 made a point - they USED to have cf camps - they closed them down as there is a bug called B. Cepacia which is pretty horrible for a CFer to have, which aparently spread fairly fast through the camps. Plus bugs like Pseudomonas, which I managed to get when I was 7 - in hospital they would group the CF kids together, in ward beds next to each other rather than cubicles. And thats how I ended up with Pseudomonas, so I've made a point to try and stay away from otehr CFers in person. I don't like the risk that either I could pass on Pseudomonas to them (or MRSA, which I've had but supposedly gotten rid of) or they could pass on a bug to me.

I suppose all you can do is have friends with CF on forums, CF sites or blogs or whatever. Everyday I wonder if i would actually be healthier right now if I'd been in a cubicle rather than a bed ward when I was 7.

I know I've just repeated everything that all the others have said, but I felt like putting in my own 2 cents. xx

 

[meggzzie]

Hmm well, I wouldn't recommend meeting other CFers in person. That's why there is such a massive CF online community - the risk of passing an infection is massive. Mellybean17 made a point - they USED to have cf camps - they closed them down as there is a bug called B. Cepacia which is pretty horrible for a CFer to have, which aparently spread fairly fast through the camps. Plus bugs like Pseudomonas, which I managed to get when I was 7 - in hospital they would group the CF kids together, in ward beds next to each other rather than cubicles. And thats how I ended up with Pseudomonas, so I've made a point to try and stay away from otehr CFers in person. I don't like the risk that either I could pass on Pseudomonas to them (or MRSA, which I've had but supposedly gotten rid of) or they could pass on a bug to me.

I suppose all you can do is have friends with CF on forums, CF sites or blogs or whatever. Everyday I wonder if i would actually be healthier right now if I'd been in a cubicle rather than a bed ward when I was 7.

I know I've just repeated everything that all the others have said, but I felt like putting in my own 2 cents. xx

 

[meggzzie]

Hmm well, I wouldn't recommend meeting other CFers in person. That's why there is such a massive CF online community - the risk of passing an infection is massive. Mellybean17 made a point - they USED to have cf camps - they closed them down as there is a bug called B. Cepacia which is pretty horrible for a CFer to have, which aparently spread fairly fast through the camps. Plus bugs like Pseudomonas, which I managed to get when I was 7 - in hospital they would group the CF kids together, in ward beds next to each other rather than cubicles. And thats how I ended up with Pseudomonas, so I've made a point to try and stay away from otehr CFers in person. I don't like the risk that either I could pass on Pseudomonas to them (or MRSA, which I've had but supposedly gotten rid of) or they could pass on a bug to me.

I suppose all you can do is have friends with CF on forums, CF sites or blogs or whatever. Everyday I wonder if i would actually be healthier right now if I'd been in a cubicle rather than a bed ward when I was 7.

I know I've just repeated everything that all the others have said, but I felt like putting in my own 2 cents. xx

 

[meggzzie]

Hmm well, I wouldn't recommend meeting other CFers in person. That's why there is such a massive CF online community - the risk of passing an infection is massive. Mellybean17 made a point - they USED to have cf camps - they closed them down as there is a bug called B. Cepacia which is pretty horrible for a CFer to have, which aparently spread fairly fast through the camps. Plus bugs like Pseudomonas, which I managed to get when I was 7 - in hospital they would group the CF kids together, in ward beds next to each other rather than cubicles. And thats how I ended up with Pseudomonas, so I've made a point to try and stay away from otehr CFers in person. I don't like the risk that either I could pass on Pseudomonas to them (or MRSA, which I've had but supposedly gotten rid of) or they could pass on a bug to me.
<br />
<br />I suppose all you can do is have friends with CF on forums, CF sites or blogs or whatever. Everyday I wonder if i would actually be healthier right now if I'd been in a cubicle rather than a bed ward when I was 7.
<br />
<br />I know I've just repeated everything that all the others have said, but I felt like putting in my own 2 cents. xx

 

[LittleMissGrumbles]

Hahah I know how you feel, Its like you hear about someone with CF but you never actually meet them so its almost like your in a world of your own. I didnt know about it untill a few months ago when i was diagnosed with it I had always shrugged it off as a chronic cough and grew to accept it was just a part of my life. After being treated and having the cough go away its kinda funny because no one can find me in the house anymore because its always so quiet now.
Anyways. this last visit to my pulmonologist I saw a woman there with her newborn. He didnt have CF but she did, she said she was in her early 20's and she looked perfectly normal. just like me. I was so relieaved to see someone else like me with a mild form that can still go about daily life and no one has to know anything.

Although I have to admit, the rude stares we get when we have 'coughing fits' or for those of you who have to take treatment at work (it totally blows) is SERIOUSLY over-rated...

 

[LittleMissGrumbles]

Hahah I know how you feel, Its like you hear about someone with CF but you never actually meet them so its almost like your in a world of your own. I didnt know about it untill a few months ago when i was diagnosed with it I had always shrugged it off as a chronic cough and grew to accept it was just a part of my life. After being treated and having the cough go away its kinda funny because no one can find me in the house anymore because its always so quiet now.
Anyways. this last visit to my pulmonologist I saw a woman there with her newborn. He didnt have CF but she did, she said she was in her early 20's and she looked perfectly normal. just like me. I was so relieaved to see someone else like me with a mild form that can still go about daily life and no one has to know anything.

Although I have to admit, the rude stares we get when we have 'coughing fits' or for those of you who have to take treatment at work (it totally blows) is SERIOUSLY over-rated...

 

[LittleMissGrumbles]

Hahah I know how you feel, Its like you hear about someone with CF but you never actually meet them so its almost like your in a world of your own. I didnt know about it untill a few months ago when i was diagnosed with it I had always shrugged it off as a chronic cough and grew to accept it was just a part of my life. After being treated and having the cough go away its kinda funny because no one can find me in the house anymore because its always so quiet now.
Anyways. this last visit to my pulmonologist I saw a woman there with her newborn. He didnt have CF but she did, she said she was in her early 20's and she looked perfectly normal. just like me. I was so relieaved to see someone else like me with a mild form that can still go about daily life and no one has to know anything.

Although I have to admit, the rude stares we get when we have 'coughing fits' or for those of you who have to take treatment at work (it totally blows) is SERIOUSLY over-rated...

 

[LittleMissGrumbles]

Hahah I know how you feel, Its like you hear about someone with CF but you never actually meet them so its almost like your in a world of your own. I didnt know about it untill a few months ago when i was diagnosed with it I had always shrugged it off as a chronic cough and grew to accept it was just a part of my life. After being treated and having the cough go away its kinda funny because no one can find me in the house anymore because its always so quiet now.
Anyways. this last visit to my pulmonologist I saw a woman there with her newborn. He didnt have CF but she did, she said she was in her early 20's and she looked perfectly normal. just like me. I was so relieaved to see someone else like me with a mild form that can still go about daily life and no one has to know anything.

Although I have to admit, the rude stares we get when we have 'coughing fits' or for those of you who have to take treatment at work (it totally blows) is SERIOUSLY over-rated...

 

[LittleMissGrumbles]

Hahah I know how you feel, Its like you hear about someone with CF but you never actually meet them so its almost like your in a world of your own. I didnt know about it untill a few months ago when i was diagnosed with it I had always shrugged it off as a chronic cough and grew to accept it was just a part of my life. After being treated and having the cough go away its kinda funny because no one can find me in the house anymore because its always so quiet now.
<br />Anyways. this last visit to my pulmonologist I saw a woman there with her newborn. He didnt have CF but she did, she said she was in her early 20's and she looked perfectly normal. just like me. I was so relieaved to see someone else like me with a mild form that can still go about daily life and no one has to know anything.
<br />
<br />Although I have to admit, the rude stares we get when we have 'coughing fits' or for those of you who have to take treatment at work (it totally blows) is SERIOUSLY over-rated...