I need someone with CF to talk to Please

A

Aspiemom

Guest
Josh, I don't have b. cepacia (yet) myself. I did want to point out <a target=_blank class=ftalternatingbarlinklarge href="http://www.helium.com/items/983431-cystic-fibrosis-and-b-cepacia-infection">an article</a>Lauren wrote on the topic, in case you haven't read it.

She has hundreds of articles written in Helium and I don't have the time to run through all of the titles. If you have the time you might want to go through and see if she has something on MRSA - it wouldn't surprise me.

I go to her <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/">old blog (Breathing Deeply)</a>, then look along the right side and you'll see "NEW! NEW! NEW! More than 100 online articles by ME!". That way you'll go straight to her articles and can just run down the titles and brief synopsis on each. Hope this helps. (She hasn't even been gone a whole week and already we're using those articles! She had amazing research and writing skills.)
 
A

Aspiemom

Guest
Josh, I don't have b. cepacia (yet) myself. I did want to point out <a target=_blank class=ftalternatingbarlinklarge href="http://www.helium.com/items/983431-cystic-fibrosis-and-b-cepacia-infection">an article</a>Lauren wrote on the topic, in case you haven't read it.

She has hundreds of articles written in Helium and I don't have the time to run through all of the titles. If you have the time you might want to go through and see if she has something on MRSA - it wouldn't surprise me.

I go to her <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/">old blog (Breathing Deeply)</a>, then look along the right side and you'll see "NEW! NEW! NEW! More than 100 online articles by ME!". That way you'll go straight to her articles and can just run down the titles and brief synopsis on each. Hope this helps. (She hasn't even been gone a whole week and already we're using those articles! She had amazing research and writing skills.)
 
A

Aspiemom

Guest
Josh, I don't have b. cepacia (yet) myself. I did want to point out <a target=_blank class=ftalternatingbarlinklarge href="http://www.helium.com/items/983431-cystic-fibrosis-and-b-cepacia-infection">an article</a>Lauren wrote on the topic, in case you haven't read it.

She has hundreds of articles written in Helium and I don't have the time to run through all of the titles. If you have the time you might want to go through and see if she has something on MRSA - it wouldn't surprise me.

I go to her <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/">old blog (Breathing Deeply)</a>, then look along the right side and you'll see "NEW! NEW! NEW! More than 100 online articles by ME!". That way you'll go straight to her articles and can just run down the titles and brief synopsis on each. Hope this helps. (She hasn't even been gone a whole week and already we're using those articles! She had amazing research and writing skills.)
 
A

Aspiemom

Guest
Josh, I don't have b. cepacia (yet) myself. I did want to point out <a target=_blank class=ftalternatingbarlinklarge href="http://www.helium.com/items/983431-cystic-fibrosis-and-b-cepacia-infection">an article</a>Lauren wrote on the topic, in case you haven't read it.

She has hundreds of articles written in Helium and I don't have the time to run through all of the titles. If you have the time you might want to go through and see if she has something on MRSA - it wouldn't surprise me.

I go to her <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/">old blog (Breathing Deeply)</a>, then look along the right side and you'll see "NEW! NEW! NEW! More than 100 online articles by ME!". That way you'll go straight to her articles and can just run down the titles and brief synopsis on each. Hope this helps. (She hasn't even been gone a whole week and already we're using those articles! She had amazing research and writing skills.)
 
A

Aspiemom

Guest
Josh, I don't have b. cepacia (yet) myself. I did want to point out <a target=_blank class=ftalternatingbarlinklarge href="http://www.helium.com/items/983431-cystic-fibrosis-and-b-cepacia-infection">an article</a>Lauren wrote on the topic, in case you haven't read it.
<br />
<br />She has hundreds of articles written in Helium and I don't have the time to run through all of the titles. If you have the time you might want to go through and see if she has something on MRSA - it wouldn't surprise me.
<br />
<br />I go to her <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/">old blog (Breathing Deeply)</a>, then look along the right side and you'll see "NEW! NEW! NEW! More than 100 online articles by ME!". That way you'll go straight to her articles and can just run down the titles and brief synopsis on each. Hope this helps. (She hasn't even been gone a whole week and already we're using those articles! She had amazing research and writing skills.)
 
R

regina65

New member
I dont know if this helps or not ,but i have 2 strands of cepacia and I recently cultured mrsa. Have had the cepacia since nov 2008. (proably a lot longer since i didn't get a culture for 2 yrs) I have cultured mrsa since may of this year. I can't tell a difference in my cough or the way i feel since i got the mrsa. I was hoping that the cepacia would kill the mrsa since it's suppose to be such a bad ass you know. (haha)Anyway when i was in the hospital on iv abx i felt so bad i didn't think i would ever recover. But i did it took a while and i did cough up some blood during that time and felt weak and dizzy. I dont recall reading what abx you are on but i was on meropenum and ceftazadine. The abx will make you feel like crap. One of them or both made me very depressed and caused me to have panic attacks. That was very scary. (the panic attacks and just finding out i had cepacia) So dont worry alot it will get better.

regina/44/w/cf/cepacia/mrsa
 
R

regina65

New member
I dont know if this helps or not ,but i have 2 strands of cepacia and I recently cultured mrsa. Have had the cepacia since nov 2008. (proably a lot longer since i didn't get a culture for 2 yrs) I have cultured mrsa since may of this year. I can't tell a difference in my cough or the way i feel since i got the mrsa. I was hoping that the cepacia would kill the mrsa since it's suppose to be such a bad ass you know. (haha)Anyway when i was in the hospital on iv abx i felt so bad i didn't think i would ever recover. But i did it took a while and i did cough up some blood during that time and felt weak and dizzy. I dont recall reading what abx you are on but i was on meropenum and ceftazadine. The abx will make you feel like crap. One of them or both made me very depressed and caused me to have panic attacks. That was very scary. (the panic attacks and just finding out i had cepacia) So dont worry alot it will get better.

regina/44/w/cf/cepacia/mrsa
 
R

regina65

New member
I dont know if this helps or not ,but i have 2 strands of cepacia and I recently cultured mrsa. Have had the cepacia since nov 2008. (proably a lot longer since i didn't get a culture for 2 yrs) I have cultured mrsa since may of this year. I can't tell a difference in my cough or the way i feel since i got the mrsa. I was hoping that the cepacia would kill the mrsa since it's suppose to be such a bad ass you know. (haha)Anyway when i was in the hospital on iv abx i felt so bad i didn't think i would ever recover. But i did it took a while and i did cough up some blood during that time and felt weak and dizzy. I dont recall reading what abx you are on but i was on meropenum and ceftazadine. The abx will make you feel like crap. One of them or both made me very depressed and caused me to have panic attacks. That was very scary. (the panic attacks and just finding out i had cepacia) So dont worry alot it will get better.

regina/44/w/cf/cepacia/mrsa
 
R

regina65

New member
I dont know if this helps or not ,but i have 2 strands of cepacia and I recently cultured mrsa. Have had the cepacia since nov 2008. (proably a lot longer since i didn't get a culture for 2 yrs) I have cultured mrsa since may of this year. I can't tell a difference in my cough or the way i feel since i got the mrsa. I was hoping that the cepacia would kill the mrsa since it's suppose to be such a bad ass you know. (haha)Anyway when i was in the hospital on iv abx i felt so bad i didn't think i would ever recover. But i did it took a while and i did cough up some blood during that time and felt weak and dizzy. I dont recall reading what abx you are on but i was on meropenum and ceftazadine. The abx will make you feel like crap. One of them or both made me very depressed and caused me to have panic attacks. That was very scary. (the panic attacks and just finding out i had cepacia) So dont worry alot it will get better.

regina/44/w/cf/cepacia/mrsa
 
R

regina65

New member
I dont know if this helps or not ,but i have 2 strands of cepacia and I recently cultured mrsa. Have had the cepacia since nov 2008. (proably a lot longer since i didn't get a culture for 2 yrs) I have cultured mrsa since may of this year. I can't tell a difference in my cough or the way i feel since i got the mrsa. I was hoping that the cepacia would kill the mrsa since it's suppose to be such a bad ass you know. (haha)Anyway when i was in the hospital on iv abx i felt so bad i didn't think i would ever recover. But i did it took a while and i did cough up some blood during that time and felt weak and dizzy. I dont recall reading what abx you are on but i was on meropenum and ceftazadine. The abx will make you feel like crap. One of them or both made me very depressed and caused me to have panic attacks. That was very scary. (the panic attacks and just finding out i had cepacia) So dont worry alot it will get better.
<br />
<br /> regina/44/w/cf/cepacia/mrsa
 
J

Jbenjamin152

New member
Regina,
Thanks for the info, I took Ceftaz as i call it for YEARS for my regular exasterbations and this one is diffrent. I feel right in there with u about being totally depressed at finding out about the b-cepecia, especially since I have kept myself from seeing my sister because of this simple factor. I haven't seen her for more than 30mins in a matter or 5 or 6 years. If the place has to be in side I simply don't show up...it's hard for her since she is 12 now....she was dx @ 2 and living with her I was in a diffrent part of the house(sleeping wise) but I was in a house where the older children raised the younger ones...it's pretty sad when she called me dad when she was younger than 2. It has been a hard battle to let her go and to not see her, I have shed many a tear for my younger sister. although back to my hospitalization. I am feeling a small amount stronger...not much of the weakness has subsided, still need the wheel chair, I also find my self RANDOMLY falling asleep...due to either lack of oxygen or pain meds. Not sure.
 
J

Jbenjamin152

New member
Regina,
Thanks for the info, I took Ceftaz as i call it for YEARS for my regular exasterbations and this one is diffrent. I feel right in there with u about being totally depressed at finding out about the b-cepecia, especially since I have kept myself from seeing my sister because of this simple factor. I haven't seen her for more than 30mins in a matter or 5 or 6 years. If the place has to be in side I simply don't show up...it's hard for her since she is 12 now....she was dx @ 2 and living with her I was in a diffrent part of the house(sleeping wise) but I was in a house where the older children raised the younger ones...it's pretty sad when she called me dad when she was younger than 2. It has been a hard battle to let her go and to not see her, I have shed many a tear for my younger sister. although back to my hospitalization. I am feeling a small amount stronger...not much of the weakness has subsided, still need the wheel chair, I also find my self RANDOMLY falling asleep...due to either lack of oxygen or pain meds. Not sure.
 
J

Jbenjamin152

New member
Regina,
Thanks for the info, I took Ceftaz as i call it for YEARS for my regular exasterbations and this one is diffrent. I feel right in there with u about being totally depressed at finding out about the b-cepecia, especially since I have kept myself from seeing my sister because of this simple factor. I haven't seen her for more than 30mins in a matter or 5 or 6 years. If the place has to be in side I simply don't show up...it's hard for her since she is 12 now....she was dx @ 2 and living with her I was in a diffrent part of the house(sleeping wise) but I was in a house where the older children raised the younger ones...it's pretty sad when she called me dad when she was younger than 2. It has been a hard battle to let her go and to not see her, I have shed many a tear for my younger sister. although back to my hospitalization. I am feeling a small amount stronger...not much of the weakness has subsided, still need the wheel chair, I also find my self RANDOMLY falling asleep...due to either lack of oxygen or pain meds. Not sure.
 
J

Jbenjamin152

New member
Regina,
Thanks for the info, I took Ceftaz as i call it for YEARS for my regular exasterbations and this one is diffrent. I feel right in there with u about being totally depressed at finding out about the b-cepecia, especially since I have kept myself from seeing my sister because of this simple factor. I haven't seen her for more than 30mins in a matter or 5 or 6 years. If the place has to be in side I simply don't show up...it's hard for her since she is 12 now....she was dx @ 2 and living with her I was in a diffrent part of the house(sleeping wise) but I was in a house where the older children raised the younger ones...it's pretty sad when she called me dad when she was younger than 2. It has been a hard battle to let her go and to not see her, I have shed many a tear for my younger sister. although back to my hospitalization. I am feeling a small amount stronger...not much of the weakness has subsided, still need the wheel chair, I also find my self RANDOMLY falling asleep...due to either lack of oxygen or pain meds. Not sure.
 
J

Jbenjamin152

New member
Regina,
<br />Thanks for the info, I took Ceftaz as i call it for YEARS for my regular exasterbations and this one is diffrent. I feel right in there with u about being totally depressed at finding out about the b-cepecia, especially since I have kept myself from seeing my sister because of this simple factor. I haven't seen her for more than 30mins in a matter or 5 or 6 years. If the place has to be in side I simply don't show up...it's hard for her since she is 12 now....she was dx @ 2 and living with her I was in a diffrent part of the house(sleeping wise) but I was in a house where the older children raised the younger ones...it's pretty sad when she called me dad when she was younger than 2. It has been a hard battle to let her go and to not see her, I have shed many a tear for my younger sister. although back to my hospitalization. I am feeling a small amount stronger...not much of the weakness has subsided, still need the wheel chair, I also find my self RANDOMLY falling asleep...due to either lack of oxygen or pain meds. Not sure.
 
H

Havoc

New member
I haven't cultured cepacia yet, but I did culture MRSA. It's gone now, however, and currently I am only culturing pan-sensitive Pseudomonas. I landed in the hospital last night. I think it was a viral thing, at least at first, and I ended up with a bacterial exacerbation on the heels of the virus.

Don't let the MRSA thing get u down too much. Educate yourself and fight back.
 
H

Havoc

New member
I haven't cultured cepacia yet, but I did culture MRSA. It's gone now, however, and currently I am only culturing pan-sensitive Pseudomonas. I landed in the hospital last night. I think it was a viral thing, at least at first, and I ended up with a bacterial exacerbation on the heels of the virus.

Don't let the MRSA thing get u down too much. Educate yourself and fight back.
 
H

Havoc

New member
I haven't cultured cepacia yet, but I did culture MRSA. It's gone now, however, and currently I am only culturing pan-sensitive Pseudomonas. I landed in the hospital last night. I think it was a viral thing, at least at first, and I ended up with a bacterial exacerbation on the heels of the virus.

Don't let the MRSA thing get u down too much. Educate yourself and fight back.
 
H

Havoc

New member
I haven't cultured cepacia yet, but I did culture MRSA. It's gone now, however, and currently I am only culturing pan-sensitive Pseudomonas. I landed in the hospital last night. I think it was a viral thing, at least at first, and I ended up with a bacterial exacerbation on the heels of the virus.

Don't let the MRSA thing get u down too much. Educate yourself and fight back.
 
H

Havoc

New member
I haven't cultured cepacia yet, but I did culture MRSA. It's gone now, however, and currently I am only culturing pan-sensitive Pseudomonas. I landed in the hospital last night. I think it was a viral thing, at least at first, and I ended up with a bacterial exacerbation on the heels of the virus.
<br />
<br />Don't let the MRSA thing get u down too much. Educate yourself and fight back.
 
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