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My 6 year old just cultured B. Cepacia, can someone please fill me in a little more on this, all I know is it's bad.
Also, those who have been there and done that can you please tell what if anything your doctors did differently.
My 6 year old just cultured B. Cepacia, can someone please fill me in a little more on this, all I know is it's bad.
Also, those who have been there and done that can you please tell what if anything your doctors did differently.
My 6 year old just cultured B. Cepacia, can someone please fill me in a little more on this, all I know is it's bad.
<br />Also, those who have been there and done that can you please tell what if anything your doctors did differently.
the problem with B Cepacia is that its different with every case, and theres so many different strains. Ive never grown it, but Ive had friends who did. Every treatment is dependent on the specific case, theres no one antibiotic that doctor's use, and a lot of times they use a few different antibiotics at the same time.
the problem with B Cepacia is that its different with every case, and theres so many different strains. Ive never grown it, but Ive had friends who did. Every treatment is dependent on the specific case, theres no one antibiotic that doctor's use, and a lot of times they use a few different antibiotics at the same time.
the problem with B Cepacia is that its different with every case, and theres so many different strains. Ive never grown it, but Ive had friends who did. Every treatment is dependent on the specific case, theres no one antibiotic that doctor's use, and a lot of times they use a few different antibiotics at the same time.
I got cepacia when I was about 13. It really didn't effect my health too much. They really didn't do treatments or antibiotics too much differently. 2.5 years ago when I was 28 I recieved a double lung transplant. I think they understand B.Cepacia more now than they did when I first cultured it. My transplant/CF doctor from one of the largest transplant center in the country told me Cepacia is broke down into like 7-8 main strains. Type 3 seems to be the most resistant. I think I had 6 or 7, I can't remember exactly. Although I personally know a woman with type 3 who was transplanted at the same center as me and is doing really good. She is almost 3 years post transplant. I really never noticed Cepacia except that the Cystic Fibrosis Foundation kinda turned their back on me. She won't be allowed at any CFF activities. Good Luck! You can check out my blog if you like <a target=_blank class=ftalternatingbarlinklarge href="http://www.jamiebug.blogspot.com">http://www.jamiebug.blogspot.com</a> also another good site is Cystic Life ~ you will find a lot of other mom's going through similar things.
I got cepacia when I was about 13. It really didn't effect my health too much. They really didn't do treatments or antibiotics too much differently. 2.5 years ago when I was 28 I recieved a double lung transplant. I think they understand B.Cepacia more now than they did when I first cultured it. My transplant/CF doctor from one of the largest transplant center in the country told me Cepacia is broke down into like 7-8 main strains. Type 3 seems to be the most resistant. I think I had 6 or 7, I can't remember exactly. Although I personally know a woman with type 3 who was transplanted at the same center as me and is doing really good. She is almost 3 years post transplant. I really never noticed Cepacia except that the Cystic Fibrosis Foundation kinda turned their back on me. She won't be allowed at any CFF activities. Good Luck! You can check out my blog if you like <a target=_blank class=ftalternatingbarlinklarge href="http://www.jamiebug.blogspot.com">http://www.jamiebug.blogspot.com</a> also another good site is Cystic Life ~ you will find a lot of other mom's going through similar things.
I got cepacia when I was about 13. It really didn't effect my health too much. They really didn't do treatments or antibiotics too much differently. 2.5 years ago when I was 28 I recieved a double lung transplant. I think they understand B.Cepacia more now than they did when I first cultured it. My transplant/CF doctor from one of the largest transplant center in the country told me Cepacia is broke down into like 7-8 main strains. Type 3 seems to be the most resistant. I think I had 6 or 7, I can't remember exactly. Although I personally know a woman with type 3 who was transplanted at the same center as me and is doing really good. She is almost 3 years post transplant. I really never noticed Cepacia except that the Cystic Fibrosis Foundation kinda turned their back on me. She won't be allowed at any CFF activities. Good Luck! You can check out my blog if you like <a target=_blank class=ftalternatingbarlinklarge href="http://www.jamiebug.blogspot.com">http://www.jamiebug.blogspot.com</a> also another good site is Cystic Life ~ you will find a lot of other mom's going through similar things.
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