New with cf

[anonymous]

I'm 38 and have just recently been diagnosed with cf as well as Mycobacterium avium (MAC). I'm from Missouri. I'v obviously had cf all my life and never been properly diagnosed and have had MAC for almost three years as well an Iga deficiency also since birth. I'm currently in search of a doc who will know how to treat me. From what little I've read it seems I have alot to learn.
Why can't people with cf be around eachother? What do they do at the clinics to keep everyone separate? How do you function at a job when you have to be worried about everybodys germs? Living in a bubble is not something I'm open to. And I have two teenage children in school who can't escape every virus that goes around the schools. Then they bring it home to me. How do you deal with that?

 

[anonymous]

I'm 38 and have just recently been diagnosed with cf as well as Mycobacterium avium (MAC). I'm from Missouri. I'v obviously had cf all my life and never been properly diagnosed and have had MAC for almost three years as well an Iga deficiency also since birth. I'm currently in search of a doc who will know how to treat me. From what little I've read it seems I have alot to learn.
Why can't people with cf be around eachother? What do they do at the clinics to keep everyone separate? How do you function at a job when you have to be worried about everybodys germs? Living in a bubble is not something I'm open to. And I have two teenage children in school who can't escape every virus that goes around the schools. Then they bring it home to me. How do you deal with that?

 

[ClashPunk82]

well in my hospital we are put into a room right away no sitting in the waiting room. and the docs have to gown and glove and after we leave the room is cleaned to kill any bacteria. i myself do not work at the moment i went to college to become a surgical tech. i completed college but got very ill after i was done and since then i havent been able to get a job and im sure no one would hire me if i was never there <img src="i/expressions/face-icon-small-smile.gif" border="0"> also to keep viruses away i wash my hands all the time. its good to wash your hands when you come home from being out and anytime you touch something dirty wash your hands before putting them anywhere near your face. CF people cannot be around eachother becuz we all have different bacterias and its not good to mix and mingle those bacterias! its for everyones safety. i hope that helps a little bit and im sure other ppl will reply and give ya some more info <img src="i/expressions/heart.gif" border="0">

Nicole 22 CF

 

[ClashPunk82]

well in my hospital we are put into a room right away no sitting in the waiting room. and the docs have to gown and glove and after we leave the room is cleaned to kill any bacteria. i myself do not work at the moment i went to college to become a surgical tech. i completed college but got very ill after i was done and since then i havent been able to get a job and im sure no one would hire me if i was never there <img src="i/expressions/face-icon-small-smile.gif" border="0"> also to keep viruses away i wash my hands all the time. its good to wash your hands when you come home from being out and anytime you touch something dirty wash your hands before putting them anywhere near your face. CF people cannot be around eachother becuz we all have different bacterias and its not good to mix and mingle those bacterias! its for everyones safety. i hope that helps a little bit and im sure other ppl will reply and give ya some more info <img src="i/expressions/heart.gif" border="0">

Nicole 22 CF

 

[anonymous]

Nicole
Thanks for answering some of my questions. I know we have to be very carful about all bacteria, but your description almost makes me feel like I have the plague. Life can't be like the dr. office, and I know about the washing your hands and not touching your face part. But how is it that we can make eachother sick in a different way than being around someone that does not have cf?
Joy

 

[anonymous]

Nicole
Thanks for answering some of my questions. I know we have to be very carful about all bacteria, but your description almost makes me feel like I have the plague. Life can't be like the dr. office, and I know about the washing your hands and not touching your face part. But how is it that we can make eachother sick in a different way than being around someone that does not have cf?
Joy

 

[ClashPunk82]

we all have different strands of different bacterias. some people have like Cepacia or MRSA and if you dont have it you dont wanna be around other ppl who do. a lot of those bacterias are resistant to a lot of drugs so its not good to mix people with CF we just have so many little bacteria guys in our body and not everyone has the same ones. its funny tho my brother has MRSA but i do not and we live in the same house. i would think i would have it but i guess CF works in myserious ways <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Nicole 22 CF

 

[ClashPunk82]

we all have different strands of different bacterias. some people have like Cepacia or MRSA and if you dont have it you dont wanna be around other ppl who do. a lot of those bacterias are resistant to a lot of drugs so its not good to mix people with CF we just have so many little bacteria guys in our body and not everyone has the same ones. its funny tho my brother has MRSA but i do not and we live in the same house. i would think i would have it but i guess CF works in myserious ways <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Nicole 22 CF

 

[anonymous]

Hi,
I am 39w/cf and micobacterial infection, I also was diagnosed late (tho not as late as you!) at 19 and I have a teenage son. When he was younger it was difficult, he brought a lot of germs home from school. Now that he is older he understands and uses good handwashing. I tell him if his friends are sick they can't come over to our house. I try to wash my hands a lot and carry disinfectant gel with me for using when I am out after touching things like doors in the stores and shopping cart handles. At my clinic we are put in rooms right away, the medical staff use good handwashing. When I am inpatient I am the only cf patient on the floor, the patients are spread out around the hospital, so everyone is not in one place spreading germs to each other. I don't work any more,I stopped 7 years ago after I was really sick from the mycobacterium. I feel much better since I stopped, it is a wonderful to be able to take care of myself and rest when I am tired. Have you checked the CFF website, they have a listing of all the CF clinics, you should be able to find a cf doc there. The knowledge is so specialized it is important to see someone who is a specialist. Hope this helped, good luck and take care! Kim

 

[anonymous]

Hi,
I am 39w/cf and micobacterial infection, I also was diagnosed late (tho not as late as you!) at 19 and I have a teenage son. When he was younger it was difficult, he brought a lot of germs home from school. Now that he is older he understands and uses good handwashing. I tell him if his friends are sick they can't come over to our house. I try to wash my hands a lot and carry disinfectant gel with me for using when I am out after touching things like doors in the stores and shopping cart handles. At my clinic we are put in rooms right away, the medical staff use good handwashing. When I am inpatient I am the only cf patient on the floor, the patients are spread out around the hospital, so everyone is not in one place spreading germs to each other. I don't work any more,I stopped 7 years ago after I was really sick from the mycobacterium. I feel much better since I stopped, it is a wonderful to be able to take care of myself and rest when I am tired. Have you checked the CFF website, they have a listing of all the CF clinics, you should be able to find a cf doc there. The knowledge is so specialized it is important to see someone who is a specialist. Hope this helped, good luck and take care! Kim

 

[anonymous]

Just a recommendation, when you go see a CF doctor take a list of questions (just like some that you have posted on this site). That way you won't be too nervous to remember all those things you were curious about.
Julie

 

[anonymous]

Just a recommendation, when you go see a CF doctor take a list of questions (just like some that you have posted on this site). That way you won't be too nervous to remember all those things you were curious about.
Julie

 

[anonymous]

Hi,
Thanks for the cff. I did find a cf dr. I hope I like him. I will see him on Nov. one. And I will write down a list of Q. Thanks Joy

 

[anonymous]

Hi,
Thanks for the cff. I did find a cf dr. I hope I like him. I will see him on Nov. one. And I will write down a list of Q. Thanks Joy

 

[anonymous]

hi! I was just diagnosed this past summer (at 18) and am trying to fit in all my treatments and get used to college life. I've been trying to talk with people with cf but its a little hard to find them. anyway, its comforting to know i'm not the only one diagnosed so late.

 

[anonymous]

hi! I was just diagnosed this past summer (at 18) and am trying to fit in all my treatments and get used to college life. I've been trying to talk with people with cf but its a little hard to find them. anyway, its comforting to know i'm not the only one diagnosed so late.

 

[ClashPunk82]

it's so weird that so many people are diagnosed so late i always thought right from the start you would have issues but it seems a lot of people do pretty well. i however am not that lucky. i was diagnosed at 6 weeks because my brother was diagnosed with it. ive been in and out of the hospital all my life and now i am about to be evaluated for a lung transplant. im so glad though that a lot of people held it off for so long and are doing well with it! <img src="i/expressions/heart.gif" border="0">

Nicole 22 CF

 

[ClashPunk82]

it's so weird that so many people are diagnosed so late i always thought right from the start you would have issues but it seems a lot of people do pretty well. i however am not that lucky. i was diagnosed at 6 weeks because my brother was diagnosed with it. ive been in and out of the hospital all my life and now i am about to be evaluated for a lung transplant. im so glad though that a lot of people held it off for so long and are doing well with it! <img src="i/expressions/heart.gif" border="0">

Nicole 22 CF

 

[anonymous]

Hope your appointment goes well. It is weird that people get diagnosed late, but as my cf specialist is revealing, there were little things, at least for me, that indicated CF. I've never been a good runner despite always being involved in sports, always having a cough, clubbing of the fingers etc. It's a little scary though cause I don't know what to expect. Anyway, hope all is going well

Jamie 18 w/cf

 

[anonymous]

Hope your appointment goes well. It is weird that people get diagnosed late, but as my cf specialist is revealing, there were little things, at least for me, that indicated CF. I've never been a good runner despite always being involved in sports, always having a cough, clubbing of the fingers etc. It's a little scary though cause I don't know what to expect. Anyway, hope all is going well

Jamie 18 w/cf