I was just diagnosed with B. Cepacia! What is B. Cepacia???

[Sweetness81]

Lol. on moving to cali. I know how that goes. My father in law lives down there in Antioch. Talk about budget crisis! Anyway,
it seems that you have a really good routine going for you. I did until I got more things piled on me.
This is kind of what I am doing. Keep in mind that I do not have a local pulmonologist.

sinus irrigation
6 neb treatments daily alternating pulmazyme and hypertonic saline and xopenex.
Accolate (same as singulair)
The VEST 2-4x daily
The PEP valve
Peak flow meter
Flutter valve

I go to my specialist anywhere from 6 weeks to every 3 months. Primary doctor every two months in between portland visits. Cardiologist, counselor and all those 8 lovely doctor visits that pretty span throughout the year. I get to a point where I have to prioritize appointments to make sure that I am not putting myself in the hospital trying to stay out of the hospital. (Try saying that five times faster.) LOL.

Anyway, I also have a couple other serious health conditions that just overwhelm me all of the time. Thats why I have kinda been freaking out alittle bit because of the whole b. cepacia issue.
I know that sometimes our cf exacerbations can cause more exaggeration than what really happens. Especially reading about it on the internet.
I had to remind my husband that when I told him to look up cf that to remember that every case is different and can affect each of us in different ways.
For so many years, I didn't have many if any at all lung issues. It was about 3 years ago when everything just spiraled out of control. just in the last two years I have had pseudomonas pneumonia 4 times! Bronchitis 3x and sinus infections galore, and now the b. cepacia and fungus lung infections! So, I don't know what caused my cf to exacerbate out of control, but I am getting more desperate for help to get it back in control. I am so tired of being on o2 and having coughing fits that make my face turn blue and having my blood pressure down as low 75/36. I'm at a point where I am even willing to find the best up to date doctor in this country.!

Can you give me any good suggestions?

 

[Sweetness81]

Lol. on moving to cali. I know how that goes. My father in law lives down there in Antioch. Talk about budget crisis! Anyway,
it seems that you have a really good routine going for you. I did until I got more things piled on me.
This is kind of what I am doing. Keep in mind that I do not have a local pulmonologist.

sinus irrigation
6 neb treatments daily alternating pulmazyme and hypertonic saline and xopenex.
Accolate (same as singulair)
The VEST 2-4x daily
The PEP valve
Peak flow meter
Flutter valve

I go to my specialist anywhere from 6 weeks to every 3 months. Primary doctor every two months in between portland visits. Cardiologist, counselor and all those 8 lovely doctor visits that pretty span throughout the year. I get to a point where I have to prioritize appointments to make sure that I am not putting myself in the hospital trying to stay out of the hospital. (Try saying that five times faster.) LOL.

Anyway, I also have a couple other serious health conditions that just overwhelm me all of the time. Thats why I have kinda been freaking out alittle bit because of the whole b. cepacia issue.
I know that sometimes our cf exacerbations can cause more exaggeration than what really happens. Especially reading about it on the internet.
I had to remind my husband that when I told him to look up cf that to remember that every case is different and can affect each of us in different ways.
For so many years, I didn't have many if any at all lung issues. It was about 3 years ago when everything just spiraled out of control. just in the last two years I have had pseudomonas pneumonia 4 times! Bronchitis 3x and sinus infections galore, and now the b. cepacia and fungus lung infections! So, I don't know what caused my cf to exacerbate out of control, but I am getting more desperate for help to get it back in control. I am so tired of being on o2 and having coughing fits that make my face turn blue and having my blood pressure down as low 75/36. I'm at a point where I am even willing to find the best up to date doctor in this country.!

Can you give me any good suggestions?

 

[Sweetness81]

Lol. on moving to cali. I know how that goes. My father in law lives down there in Antioch. Talk about budget crisis! Anyway,
it seems that you have a really good routine going for you. I did until I got more things piled on me.
This is kind of what I am doing. Keep in mind that I do not have a local pulmonologist.

sinus irrigation
6 neb treatments daily alternating pulmazyme and hypertonic saline and xopenex.
Accolate (same as singulair)
The VEST 2-4x daily
The PEP valve
Peak flow meter
Flutter valve

I go to my specialist anywhere from 6 weeks to every 3 months. Primary doctor every two months in between portland visits. Cardiologist, counselor and all those 8 lovely doctor visits that pretty span throughout the year. I get to a point where I have to prioritize appointments to make sure that I am not putting myself in the hospital trying to stay out of the hospital. (Try saying that five times faster.) LOL.

Anyway, I also have a couple other serious health conditions that just overwhelm me all of the time. Thats why I have kinda been freaking out alittle bit because of the whole b. cepacia issue.
I know that sometimes our cf exacerbations can cause more exaggeration than what really happens. Especially reading about it on the internet.
I had to remind my husband that when I told him to look up cf that to remember that every case is different and can affect each of us in different ways.
For so many years, I didn't have many if any at all lung issues. It was about 3 years ago when everything just spiraled out of control. just in the last two years I have had pseudomonas pneumonia 4 times! Bronchitis 3x and sinus infections galore, and now the b. cepacia and fungus lung infections! So, I don't know what caused my cf to exacerbate out of control, but I am getting more desperate for help to get it back in control. I am so tired of being on o2 and having coughing fits that make my face turn blue and having my blood pressure down as low 75/36. I'm at a point where I am even willing to find the best up to date doctor in this country.!

Can you give me any good suggestions?

 

[Sweetness81]

Lol. on moving to cali. I know how that goes. My father in law lives down there in Antioch. Talk about budget crisis! Anyway,
it seems that you have a really good routine going for you. I did until I got more things piled on me.
This is kind of what I am doing. Keep in mind that I do not have a local pulmonologist.

sinus irrigation
6 neb treatments daily alternating pulmazyme and hypertonic saline and xopenex.
Accolate (same as singulair)
The VEST 2-4x daily
The PEP valve
Peak flow meter
Flutter valve

I go to my specialist anywhere from 6 weeks to every 3 months. Primary doctor every two months in between portland visits. Cardiologist, counselor and all those 8 lovely doctor visits that pretty span throughout the year. I get to a point where I have to prioritize appointments to make sure that I am not putting myself in the hospital trying to stay out of the hospital. (Try saying that five times faster.) LOL.

Anyway, I also have a couple other serious health conditions that just overwhelm me all of the time. Thats why I have kinda been freaking out alittle bit because of the whole b. cepacia issue.
I know that sometimes our cf exacerbations can cause more exaggeration than what really happens. Especially reading about it on the internet.
I had to remind my husband that when I told him to look up cf that to remember that every case is different and can affect each of us in different ways.
For so many years, I didn't have many if any at all lung issues. It was about 3 years ago when everything just spiraled out of control. just in the last two years I have had pseudomonas pneumonia 4 times! Bronchitis 3x and sinus infections galore, and now the b. cepacia and fungus lung infections! So, I don't know what caused my cf to exacerbate out of control, but I am getting more desperate for help to get it back in control. I am so tired of being on o2 and having coughing fits that make my face turn blue and having my blood pressure down as low 75/36. I'm at a point where I am even willing to find the best up to date doctor in this country.!

Can you give me any good suggestions?

 

[Sweetness81]

Lol. on moving to cali. I know how that goes. My father in law lives down there in Antioch. Talk about budget crisis! Anyway,
<br />it seems that you have a really good routine going for you. I did until I got more things piled on me.
<br />This is kind of what I am doing. Keep in mind that I do not have a local pulmonologist.
<br />
<br />sinus irrigation
<br />6 neb treatments daily alternating pulmazyme and hypertonic saline and xopenex.
<br />Accolate (same as singulair)
<br />The VEST 2-4x daily
<br />The PEP valve
<br />Peak flow meter
<br />Flutter valve
<br />
<br />I go to my specialist anywhere from 6 weeks to every 3 months. Primary doctor every two months in between portland visits. Cardiologist, counselor and all those 8 lovely doctor visits that pretty span throughout the year. I get to a point where I have to prioritize appointments to make sure that I am not putting myself in the hospital trying to stay out of the hospital. (Try saying that five times faster.) LOL.
<br />
<br />Anyway, I also have a couple other serious health conditions that just overwhelm me all of the time. Thats why I have kinda been freaking out alittle bit because of the whole b. cepacia issue.
<br />I know that sometimes our cf exacerbations can cause more exaggeration than what really happens. Especially reading about it on the internet.
<br />I had to remind my husband that when I told him to look up cf that to remember that every case is different and can affect each of us in different ways.
<br />For so many years, I didn't have many if any at all lung issues. It was about 3 years ago when everything just spiraled out of control. just in the last two years I have had pseudomonas pneumonia 4 times! Bronchitis 3x and sinus infections galore, and now the b. cepacia and fungus lung infections! So, I don't know what caused my cf to exacerbate out of control, but I am getting more desperate for help to get it back in control. I am so tired of being on o2 and having coughing fits that make my face turn blue and having my blood pressure down as low 75/36. I'm at a point where I am even willing to find the best up to date doctor in this country.!
<br />
<br />Can you give me any good suggestions?

 

[theLostMiler]

From <i>my</i> understandings, well known places for CF centers:

Toronto, Canada <img src="i/expressions/face-icon-small-smile.gif" border="0">

North Carolina (I believe for frequency of risky tx)
Pittsburg (good for mycobacteriums and cepecia I believe)
Denver (experienced with mycobacteriums, Im not sure about tx experience though)
Stanford, CA (lots of research here)

from other cf'ers here on the forums, I have since been interested in:

Cleveland
Columbia (they have good stats from what it looks like)

My doctors have talked about and looked at centers in (besides some listed above)

S.F.
LA
Seattle
Colorado
Arizona


Wonder what others will say if they offer any input... it would be nice to hear more suggestions!

 

[theLostMiler]

From <i>my</i> understandings, well known places for CF centers:

Toronto, Canada <img src="i/expressions/face-icon-small-smile.gif" border="0">

North Carolina (I believe for frequency of risky tx)
Pittsburg (good for mycobacteriums and cepecia I believe)
Denver (experienced with mycobacteriums, Im not sure about tx experience though)
Stanford, CA (lots of research here)

from other cf'ers here on the forums, I have since been interested in:

Cleveland
Columbia (they have good stats from what it looks like)

My doctors have talked about and looked at centers in (besides some listed above)

S.F.
LA
Seattle
Colorado
Arizona


Wonder what others will say if they offer any input... it would be nice to hear more suggestions!

 

[theLostMiler]

From <i>my</i> understandings, well known places for CF centers:

Toronto, Canada <img src="i/expressions/face-icon-small-smile.gif" border="0">

North Carolina (I believe for frequency of risky tx)
Pittsburg (good for mycobacteriums and cepecia I believe)
Denver (experienced with mycobacteriums, Im not sure about tx experience though)
Stanford, CA (lots of research here)

from other cf'ers here on the forums, I have since been interested in:

Cleveland
Columbia (they have good stats from what it looks like)

My doctors have talked about and looked at centers in (besides some listed above)

S.F.
LA
Seattle
Colorado
Arizona


Wonder what others will say if they offer any input... it would be nice to hear more suggestions!

 

[theLostMiler]

From <i>my</i> understandings, well known places for CF centers:

Toronto, Canada <img src="i/expressions/face-icon-small-smile.gif" border="0">

North Carolina (I believe for frequency of risky tx)
Pittsburg (good for mycobacteriums and cepecia I believe)
Denver (experienced with mycobacteriums, Im not sure about tx experience though)
Stanford, CA (lots of research here)

from other cf'ers here on the forums, I have since been interested in:

Cleveland
Columbia (they have good stats from what it looks like)

My doctors have talked about and looked at centers in (besides some listed above)

S.F.
LA
Seattle
Colorado
Arizona


Wonder what others will say if they offer any input... it would be nice to hear more suggestions!

 

[theLostMiler]

From <i>my</i> understandings, well known places for CF centers:
<br />
<br />Toronto, Canada <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />North Carolina (I believe for frequency of risky tx)
<br />Pittsburg (good for mycobacteriums and cepecia I believe)
<br />Denver (experienced with mycobacteriums, Im not sure about tx experience though)
<br />Stanford, CA (lots of research here)
<br />
<br />from other cf'ers here on the forums, I have since been interested in:
<br />
<br />Cleveland
<br />Columbia (they have good stats from what it looks like)
<br />
<br />My doctors have talked about and looked at centers in (besides some listed above)
<br />
<br />S.F.
<br />LA
<br />Seattle
<br />Colorado
<br />Arizona
<br />
<br />
<br />Wonder what others will say if they offer any input... it would be nice to hear more suggestions!

 

[dasjsmum]

HI Mary

I just cannot believe that you have only just found out that you have cepacia!! That clinic you are in is incompetent! Cepacia is the reason that separation of cf people was instigated world wide approx twenty years ago.

Cepacia patients usually visit clinic on separate days and are hospitalised on separate wards here. Plenty of people on this forum do culture cepacia and appear to be doing well, but it is one of the dreaded bugs that we all try to avoid.

As someone said, it used to be called pseudomonas cepacia, and is different to staph a. or mrsa. it just infuriated me that your clinic has not put world best practice responses into place with you culturing cepacia...it means that others may have unnecessarily been exposed to cepacia due to their (the clinics) incompetence.

Anyhow, sorry about my rant and to hear your news, and am not holding you responsible, please dont take it that way <img src="i/expressions/face-icon-small-smile.gif" border="0"> and as someone said, sounds like you are doing well, so hope that remains the case <img src="i/expressions/face-icon-small-smile.gif" border="0"> The forums are very helpful places, and you will find cf adults here who can give you advice regarding their experiences with cepacia <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[dasjsmum]

HI Mary

I just cannot believe that you have only just found out that you have cepacia!! That clinic you are in is incompetent! Cepacia is the reason that separation of cf people was instigated world wide approx twenty years ago.

Cepacia patients usually visit clinic on separate days and are hospitalised on separate wards here. Plenty of people on this forum do culture cepacia and appear to be doing well, but it is one of the dreaded bugs that we all try to avoid.

As someone said, it used to be called pseudomonas cepacia, and is different to staph a. or mrsa. it just infuriated me that your clinic has not put world best practice responses into place with you culturing cepacia...it means that others may have unnecessarily been exposed to cepacia due to their (the clinics) incompetence.

Anyhow, sorry about my rant and to hear your news, and am not holding you responsible, please dont take it that way <img src="i/expressions/face-icon-small-smile.gif" border="0"> and as someone said, sounds like you are doing well, so hope that remains the case <img src="i/expressions/face-icon-small-smile.gif" border="0"> The forums are very helpful places, and you will find cf adults here who can give you advice regarding their experiences with cepacia <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[dasjsmum]

HI Mary

I just cannot believe that you have only just found out that you have cepacia!! That clinic you are in is incompetent! Cepacia is the reason that separation of cf people was instigated world wide approx twenty years ago.

Cepacia patients usually visit clinic on separate days and are hospitalised on separate wards here. Plenty of people on this forum do culture cepacia and appear to be doing well, but it is one of the dreaded bugs that we all try to avoid.

As someone said, it used to be called pseudomonas cepacia, and is different to staph a. or mrsa. it just infuriated me that your clinic has not put world best practice responses into place with you culturing cepacia...it means that others may have unnecessarily been exposed to cepacia due to their (the clinics) incompetence.

Anyhow, sorry about my rant and to hear your news, and am not holding you responsible, please dont take it that way <img src="i/expressions/face-icon-small-smile.gif" border="0"> and as someone said, sounds like you are doing well, so hope that remains the case <img src="i/expressions/face-icon-small-smile.gif" border="0"> The forums are very helpful places, and you will find cf adults here who can give you advice regarding their experiences with cepacia <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[dasjsmum]

HI Mary

I just cannot believe that you have only just found out that you have cepacia!! That clinic you are in is incompetent! Cepacia is the reason that separation of cf people was instigated world wide approx twenty years ago.

Cepacia patients usually visit clinic on separate days and are hospitalised on separate wards here. Plenty of people on this forum do culture cepacia and appear to be doing well, but it is one of the dreaded bugs that we all try to avoid.

As someone said, it used to be called pseudomonas cepacia, and is different to staph a. or mrsa. it just infuriated me that your clinic has not put world best practice responses into place with you culturing cepacia...it means that others may have unnecessarily been exposed to cepacia due to their (the clinics) incompetence.

Anyhow, sorry about my rant and to hear your news, and am not holding you responsible, please dont take it that way <img src="i/expressions/face-icon-small-smile.gif" border="0"> and as someone said, sounds like you are doing well, so hope that remains the case <img src="i/expressions/face-icon-small-smile.gif" border="0"> The forums are very helpful places, and you will find cf adults here who can give you advice regarding their experiences with cepacia <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[dasjsmum]

HI Mary
<br />
<br />I just cannot believe that you have only just found out that you have cepacia!! That clinic you are in is incompetent! Cepacia is the reason that separation of cf people was instigated world wide approx twenty years ago.
<br />
<br />Cepacia patients usually visit clinic on separate days and are hospitalised on separate wards here. Plenty of people on this forum do culture cepacia and appear to be doing well, but it is one of the dreaded bugs that we all try to avoid.
<br />
<br />As someone said, it used to be called pseudomonas cepacia, and is different to staph a. or mrsa. it just infuriated me that your clinic has not put world best practice responses into place with you culturing cepacia...it means that others may have unnecessarily been exposed to cepacia due to their (the clinics) incompetence.
<br />
<br />Anyhow, sorry about my rant and to hear your news, and am not holding you responsible, please dont take it that way <img src="i/expressions/face-icon-small-smile.gif" border="0"> and as someone said, sounds like you are doing well, so hope that remains the case <img src="i/expressions/face-icon-small-smile.gif" border="0"> The forums are very helpful places, and you will find cf adults here who can give you advice regarding their experiences with cepacia <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sweetness81]

Don't worry I'm not thinking that you would hold anything against me. If I knew that I had the b. cepacia that would be when I deserve some responsibility. But the fact is, that I did just find out literally just two weeks ago! I will definitely look up some of those recommendations. Thank you for those. I have come to a realization that dr.s don't necessarily know more than we do about our own cf cases. We are the key to the cure afterall. I hope that didn't come out as prideful. I am just stating a fact. Anyway, I don't take anything personally here, unless it is said otherwise. I have been on here alot lately, for the very reason of asking for help.
I honestly don't know that much about b. cepacia multivorans. I didn't know it was even a huge thing that most cfers try to avoid. I didn't know that it is very easily spread either. So I guess the only thing that I can do is hope that I didn't expose anyone to this bacteria unknowningly. I would feel so much worse if I did.
As for being seperated from other cfers? Nope, I go on the same day as everyone else. I just am required to wear a mask into the building. I am not kept away from anyone really. I was even near another cfer when I was in the hospital a month ago. We shared a wall!
I knew better than to just go talk to her, so I didn't go within like 20ft. But there were times we accidently got closer than that. We both made sure to take seperate elevators when going down to lobby floors. For the most part, I was around others alot of the time. So I did not know that it was a bad thing. No one had told me otherwise. Every dr. kept encouraging me to walk around and exercise with others too!
Now, that I know what could have happened? I will defintely be asking if there is anything else that they are holding back from me. Now, I am officially frustrated. Especially for the very fact that I could have gotten sicker faster, or even gotten other cfers very sick! I will be asking for the MRSA treatment. Which at my hospital means, gown, mask, and gloves when examining me. Most of the time I don't get that so. I really thank everyone for makeing me aware of these very real and potentially serious dangers.! This could be very life threatening to someone. I am so mad that I wasn't even made aware of this stuff. This is just not right.
Thanks for everyone imput and help. I wouldn't have known this very important information otherwise. I will continue to keep an open mind. I am always wanting to learn more and more. I know that some people have wisdom beyone there years. Please don't ever be afraid to think that I don't want to know more, because I do. I will be having a very important talk with my dr. in a month or so. I will keep everyone updated.

 

[Sweetness81]

Don't worry I'm not thinking that you would hold anything against me. If I knew that I had the b. cepacia that would be when I deserve some responsibility. But the fact is, that I did just find out literally just two weeks ago! I will definitely look up some of those recommendations. Thank you for those. I have come to a realization that dr.s don't necessarily know more than we do about our own cf cases. We are the key to the cure afterall. I hope that didn't come out as prideful. I am just stating a fact. Anyway, I don't take anything personally here, unless it is said otherwise. I have been on here alot lately, for the very reason of asking for help.
I honestly don't know that much about b. cepacia multivorans. I didn't know it was even a huge thing that most cfers try to avoid. I didn't know that it is very easily spread either. So I guess the only thing that I can do is hope that I didn't expose anyone to this bacteria unknowningly. I would feel so much worse if I did.
As for being seperated from other cfers? Nope, I go on the same day as everyone else. I just am required to wear a mask into the building. I am not kept away from anyone really. I was even near another cfer when I was in the hospital a month ago. We shared a wall!
I knew better than to just go talk to her, so I didn't go within like 20ft. But there were times we accidently got closer than that. We both made sure to take seperate elevators when going down to lobby floors. For the most part, I was around others alot of the time. So I did not know that it was a bad thing. No one had told me otherwise. Every dr. kept encouraging me to walk around and exercise with others too!
Now, that I know what could have happened? I will defintely be asking if there is anything else that they are holding back from me. Now, I am officially frustrated. Especially for the very fact that I could have gotten sicker faster, or even gotten other cfers very sick! I will be asking for the MRSA treatment. Which at my hospital means, gown, mask, and gloves when examining me. Most of the time I don't get that so. I really thank everyone for makeing me aware of these very real and potentially serious dangers.! This could be very life threatening to someone. I am so mad that I wasn't even made aware of this stuff. This is just not right.
Thanks for everyone imput and help. I wouldn't have known this very important information otherwise. I will continue to keep an open mind. I am always wanting to learn more and more. I know that some people have wisdom beyone there years. Please don't ever be afraid to think that I don't want to know more, because I do. I will be having a very important talk with my dr. in a month or so. I will keep everyone updated.

 

[Sweetness81]

Don't worry I'm not thinking that you would hold anything against me. If I knew that I had the b. cepacia that would be when I deserve some responsibility. But the fact is, that I did just find out literally just two weeks ago! I will definitely look up some of those recommendations. Thank you for those. I have come to a realization that dr.s don't necessarily know more than we do about our own cf cases. We are the key to the cure afterall. I hope that didn't come out as prideful. I am just stating a fact. Anyway, I don't take anything personally here, unless it is said otherwise. I have been on here alot lately, for the very reason of asking for help.
I honestly don't know that much about b. cepacia multivorans. I didn't know it was even a huge thing that most cfers try to avoid. I didn't know that it is very easily spread either. So I guess the only thing that I can do is hope that I didn't expose anyone to this bacteria unknowningly. I would feel so much worse if I did.
As for being seperated from other cfers? Nope, I go on the same day as everyone else. I just am required to wear a mask into the building. I am not kept away from anyone really. I was even near another cfer when I was in the hospital a month ago. We shared a wall!
I knew better than to just go talk to her, so I didn't go within like 20ft. But there were times we accidently got closer than that. We both made sure to take seperate elevators when going down to lobby floors. For the most part, I was around others alot of the time. So I did not know that it was a bad thing. No one had told me otherwise. Every dr. kept encouraging me to walk around and exercise with others too!
Now, that I know what could have happened? I will defintely be asking if there is anything else that they are holding back from me. Now, I am officially frustrated. Especially for the very fact that I could have gotten sicker faster, or even gotten other cfers very sick! I will be asking for the MRSA treatment. Which at my hospital means, gown, mask, and gloves when examining me. Most of the time I don't get that so. I really thank everyone for makeing me aware of these very real and potentially serious dangers.! This could be very life threatening to someone. I am so mad that I wasn't even made aware of this stuff. This is just not right.
Thanks for everyone imput and help. I wouldn't have known this very important information otherwise. I will continue to keep an open mind. I am always wanting to learn more and more. I know that some people have wisdom beyone there years. Please don't ever be afraid to think that I don't want to know more, because I do. I will be having a very important talk with my dr. in a month or so. I will keep everyone updated.

 

[Sweetness81]

Don't worry I'm not thinking that you would hold anything against me. If I knew that I had the b. cepacia that would be when I deserve some responsibility. But the fact is, that I did just find out literally just two weeks ago! I will definitely look up some of those recommendations. Thank you for those. I have come to a realization that dr.s don't necessarily know more than we do about our own cf cases. We are the key to the cure afterall. I hope that didn't come out as prideful. I am just stating a fact. Anyway, I don't take anything personally here, unless it is said otherwise. I have been on here alot lately, for the very reason of asking for help.
I honestly don't know that much about b. cepacia multivorans. I didn't know it was even a huge thing that most cfers try to avoid. I didn't know that it is very easily spread either. So I guess the only thing that I can do is hope that I didn't expose anyone to this bacteria unknowningly. I would feel so much worse if I did.
As for being seperated from other cfers? Nope, I go on the same day as everyone else. I just am required to wear a mask into the building. I am not kept away from anyone really. I was even near another cfer when I was in the hospital a month ago. We shared a wall!
I knew better than to just go talk to her, so I didn't go within like 20ft. But there were times we accidently got closer than that. We both made sure to take seperate elevators when going down to lobby floors. For the most part, I was around others alot of the time. So I did not know that it was a bad thing. No one had told me otherwise. Every dr. kept encouraging me to walk around and exercise with others too!
Now, that I know what could have happened? I will defintely be asking if there is anything else that they are holding back from me. Now, I am officially frustrated. Especially for the very fact that I could have gotten sicker faster, or even gotten other cfers very sick! I will be asking for the MRSA treatment. Which at my hospital means, gown, mask, and gloves when examining me. Most of the time I don't get that so. I really thank everyone for makeing me aware of these very real and potentially serious dangers.! This could be very life threatening to someone. I am so mad that I wasn't even made aware of this stuff. This is just not right.
Thanks for everyone imput and help. I wouldn't have known this very important information otherwise. I will continue to keep an open mind. I am always wanting to learn more and more. I know that some people have wisdom beyone there years. Please don't ever be afraid to think that I don't want to know more, because I do. I will be having a very important talk with my dr. in a month or so. I will keep everyone updated.

 

[Sweetness81]

Don't worry I'm not thinking that you would hold anything against me. If I knew that I had the b. cepacia that would be when I deserve some responsibility. But the fact is, that I did just find out literally just two weeks ago! I will definitely look up some of those recommendations. Thank you for those. I have come to a realization that dr.s don't necessarily know more than we do about our own cf cases. We are the key to the cure afterall. I hope that didn't come out as prideful. I am just stating a fact. Anyway, I don't take anything personally here, unless it is said otherwise. I have been on here alot lately, for the very reason of asking for help.
<br />I honestly don't know that much about b. cepacia multivorans. I didn't know it was even a huge thing that most cfers try to avoid. I didn't know that it is very easily spread either. So I guess the only thing that I can do is hope that I didn't expose anyone to this bacteria unknowningly. I would feel so much worse if I did.
<br />As for being seperated from other cfers? Nope, I go on the same day as everyone else. I just am required to wear a mask into the building. I am not kept away from anyone really. I was even near another cfer when I was in the hospital a month ago. We shared a wall!
<br />I knew better than to just go talk to her, so I didn't go within like 20ft. But there were times we accidently got closer than that. We both made sure to take seperate elevators when going down to lobby floors. For the most part, I was around others alot of the time. So I did not know that it was a bad thing. No one had told me otherwise. Every dr. kept encouraging me to walk around and exercise with others too!
<br />Now, that I know what could have happened? I will defintely be asking if there is anything else that they are holding back from me. Now, I am officially frustrated. Especially for the very fact that I could have gotten sicker faster, or even gotten other cfers very sick! I will be asking for the MRSA treatment. Which at my hospital means, gown, mask, and gloves when examining me. Most of the time I don't get that so. I really thank everyone for makeing me aware of these very real and potentially serious dangers.! This could be very life threatening to someone. I am so mad that I wasn't even made aware of this stuff. This is just not right.
<br />Thanks for everyone imput and help. I wouldn't have known this very important information otherwise. I will continue to keep an open mind. I am always wanting to learn more and more. I know that some people have wisdom beyone there years. Please don't ever be afraid to think that I don't want to know more, because I do. I will be having a very important talk with my dr. in a month or so. I will keep everyone updated.