B.Cepacia help

P

pencf

Guest
Been where you are! Got that news that our daughter at age 4 (2000) cultured B. Cepacia. I was devastated, and panicked that her days were numbered, but then again, with CF I guess they are anyway. At that time, the registry for patients culturing B. Cepacia showed the longest living patient was 9 yrs. Well, its 2011, our daughter has had that bug for 11 yrs., and for the most part, we live in harmony with it, as we do PA. She has been hospitalized 6 times in 11 yrs., to CF standards, that's pretty good. <br>If your doctor has not already done so, request that the cepacia sputum culture be sent to Dr. LePuma. He is the researcher at the core of B. Cepacia Research. There are 6 to 8 genomes of B. Cepacia and not all are considered directly fatal. B. Cepacia IS common in our environment. It lives in ponds, creeks, basements, dirt...etc. I truly believe my daughter got this bug from one of two places. From the coat of our Black Lab who had taken a dip in local pond in a park near our home, OR a pile of top soil I let her play for hours in. If I had known, she wouldn't have been in either situation, however, she was 4 yrs old, and was just being a kid, "play in the dirt" and Loving on our Family Pet.<br>Take one day at a time, and ask for sputum cultures at EVERY quarterly visit! Be proactive! The Best Medicine when dealing with CF! <br>
 
B

bobderr

New member
There are several strains of b. cepacia, and not all of them are antibiotic resistant. Our organization, Pennsylvania Cystic Fibrosis, Inc., supports the research of Douglas Luckie, Ph.D., at Michigan State University. He is doing research on b. cepacia and you can reach him at luckie@msu.ed.
 
B

bobderr

New member
There are several strains of b. cepacia, and not all of them are antibiotic resistant. Our organization, Pennsylvania Cystic Fibrosis, Inc., supports the research of Douglas Luckie, Ph.D., at Michigan State University. He is doing research on b. cepacia and you can reach him at luckie@msu.ed.
 
B

bobderr

New member
There are several strains of b. cepacia, and not all of them are antibiotic resistant. Our organization, Pennsylvania Cystic Fibrosis, Inc., supports the research of Douglas Luckie, Ph.D., at Michigan State University. He is doing research on b. cepacia and you can reach him at luckie@msu.ed.
 
E

ericverdon

New member
I think there are nine strands of Cepacia, and I cultured one of them about a year and a half ago. I don't remember which one I have, but my doctors have told me that it is one of the easier ones to manage, and so far it has done little to nothing to me. Infact, my FEV1 has increased since I cultured it up to 114%, FVC and small air ways have also increased since culturing it. I'm a competative runner, and train upwards to five times a week which explains lung function, but there is no reason this bug can't be managed. I've been hospitilized because of bronciactesis in my right uper lobe which causes hemoptisis (which was present before cepacia) and they use meropenem to treat the cepacia specifically. I remember being extremely worried when the doctors first told me, so I did a bit of reasearch and found other people who live with the bug and also say that it is manageable. When in clinic I have to come in later than usual for most CF patients to leave, and they mask up, gown up and wear gloves. When walking around the hospital I always wear a mask too. When hospitilized, I either get put in an isolation room, or in a room with two beds but no room mate, and any nurse/doctor who comes in has to also gown up. As for sex, well I have a girlfriend of two years and it never stopped us.. hopes that's what you meant by sex, lol. hope i could help, email me at thedude599@hotmail.com if you want to ask more questions, because I don't come on here very often.
 
E

ericverdon

New member
I think there are nine strands of Cepacia, and I cultured one of them about a year and a half ago. I don't remember which one I have, but my doctors have told me that it is one of the easier ones to manage, and so far it has done little to nothing to me. Infact, my FEV1 has increased since I cultured it up to 114%, FVC and small air ways have also increased since culturing it. I'm a competative runner, and train upwards to five times a week which explains lung function, but there is no reason this bug can't be managed. I've been hospitilized because of bronciactesis in my right uper lobe which causes hemoptisis (which was present before cepacia) and they use meropenem to treat the cepacia specifically. I remember being extremely worried when the doctors first told me, so I did a bit of reasearch and found other people who live with the bug and also say that it is manageable. When in clinic I have to come in later than usual for most CF patients to leave, and they mask up, gown up and wear gloves. When walking around the hospital I always wear a mask too. When hospitilized, I either get put in an isolation room, or in a room with two beds but no room mate, and any nurse/doctor who comes in has to also gown up. As for sex, well I have a girlfriend of two years and it never stopped us.. hopes that's what you meant by sex, lol. hope i could help, email me at thedude599@hotmail.com if you want to ask more questions, because I don't come on here very often.
 
E

ericverdon

New member
I think there are nine strands of Cepacia, and I cultured one of them about a year and a half ago. I don't remember which one I have, but my doctors have told me that it is one of the easier ones to manage, and so far it has done little to nothing to me. Infact, my FEV1 has increased since I cultured it up to 114%, FVC and small air ways have also increased since culturing it. I'm a competative runner, and train upwards to five times a week which explains lung function, but there is no reason this bug can't be managed. I've been hospitilized because of bronciactesis in my right uper lobe which causes hemoptisis (which was present before cepacia) and they use meropenem to treat the cepacia specifically. I remember being extremely worried when the doctors first told me, so I did a bit of reasearch and found other people who live with the bug and also say that it is manageable. When in clinic I have to come in later than usual for most CF patients to leave, and they mask up, gown up and wear gloves. When walking around the hospital I always wear a mask too. When hospitilized, I either get put in an isolation room, or in a room with two beds but no room mate, and any nurse/doctor who comes in has to also gown up. As for sex, well I have a girlfriend of two years and it never stopped us.. hopes that's what you meant by sex, lol. hope i could help, email me at thedude599@hotmail.com if you want to ask more questions, because I don't come on here very often.
 
T

tammykrumrey

Guest
My daughter has been culturing Burkholderia Cepacia for over two years now. I was terrified with the news. I so know how you feel. I started shaking and felt sick to my stomach. But she has not had any problems with it. She cultures many things as well. She is 13, and has been hospitalized only four times in the past five years. There are, as already mentioned, many strands. Kayla has B. Multivorans. It is resistant to everything, and has not budged. But, her FEV1 is still average in the 90s. She is on isolation when admitted, and must attend a different clinic day than the other patients. But that is really it. (no CFF events of course)

My younger daughter, also with CF, has not caught it from her.

My nephew, who is 20, also has CF. He has cultured B. Multivorans for 9 years and is doing pretty well. His wife, also has CF and also has B. Multivorans. I am pretty sure they have a normal sex life, although I have never come out and asked <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
My daughter has been culturing Burkholderia Cepacia for over two years now. I was terrified with the news. I so know how you feel. I started shaking and felt sick to my stomach. But she has not had any problems with it. She cultures many things as well. She is 13, and has been hospitalized only four times in the past five years. There are, as already mentioned, many strands. Kayla has B. Multivorans. It is resistant to everything, and has not budged. But, her FEV1 is still average in the 90s. She is on isolation when admitted, and must attend a different clinic day than the other patients. But that is really it. (no CFF events of course)

My younger daughter, also with CF, has not caught it from her.

My nephew, who is 20, also has CF. He has cultured B. Multivorans for 9 years and is doing pretty well. His wife, also has CF and also has B. Multivorans. I am pretty sure they have a normal sex life, although I have never come out and asked <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
My daughter has been culturing Burkholderia Cepacia for over two years now. I was terrified with the news. I so know how you feel. I started shaking and felt sick to my stomach. But she has not had any problems with it. She cultures many things as well. She is 13, and has been hospitalized only four times in the past five years. There are, as already mentioned, many strands. Kayla has B. Multivorans. It is resistant to everything, and has not budged. But, her FEV1 is still average in the 90s. She is on isolation when admitted, and must attend a different clinic day than the other patients. But that is really it. (no CFF events of course)
<br />
<br />My younger daughter, also with CF, has not caught it from her.
<br />
<br />My nephew, who is 20, also has CF. He has cultured B. Multivorans for 9 years and is doing pretty well. His wife, also has CF and also has B. Multivorans. I am pretty sure they have a normal sex life, although I have never come out and asked <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
 
You must log in or register to reply here.
Top