falloutboygurl16
New member
Well nope...ok when i first came to my new doctor i had weighed 70 pounds and was 5"1 because of my other docotor's bad care. He did not make me do my treatments and kept me on the same antibiotic biactin for a long time, he didnt take many speutum samples or anything. When i went to my new doctor he took samples and sent them to michican were they can only test for cepacia. They found out that i do have cepacia it is burkholderia cepacia multiviorans...so he said it is not that good and then they took a sample a couple months ago and it came back negative, but they still have to keep culturing it before they find out if it is gone for sure. I think that is what i had before i went to my new doctor, but my other one didnt bother even testing for it, so i think that sucks! I went into the hospital and then i got better they put in a feeding tube and stuff that they are thinking about taking out because i gained all my weight on my own so it was just a matter of getting my cfrd under control. Now i do pulmozyme and tobi every other month and albuteral...but before i went to the hospital i only did treatments when i got sick, and the doctor didnt care! i really dont think he cared about me living or not because now that i look back on it it seems like its true. So i do my treatments daily and i eat alot and my weight has gone up so that means lung function does too. I have a lot of energy now compared to when i did not and it feels really great so im really happy that i am going to the right cf doctors! I hope that helps other people see whut having the right cf doctor means. Because before they put me in the hospital they didnt know if any of the things they did would help me, they thought of the worst so it was pretty scary.