mom2brooke
New member
We are now on day 3 of the infusions. She has had a few side effects so far form the med. She has had the sweating, her blood pressure has dropped some during the treatment (lowest was 89/49) and she is very fatigued. She hasn't wanted to get out of bed the last 2 days. The infectious disease doctors are supposed to be in tomorrow to let us know exactly how long she will be on the Amphotericin B. I am not very confident in the ID doctors. They are the ones who said that it was plain candida yeast growing in her lungs and not Trichosporon so they signed off on her case. Her pulmonary doctor was livid and went around them and started her on the meds. It was an huge amount of "yeast" growing in her lungs, but as of Sunday the lab couldn't say one way or the other. Definitive results came back today. It is Trichosporon growing. They did a bronch on her last week. Amazingly although she is growing the MRSA and Psuedomonas she had no puss in her bronchial tubes. The doctor said they looked very A-Typical for CF lungs. If we can just get rid of the Trichosporon then maybe we will stay out of the hospital for a while. (THis is her 5th hospitalization in a year. She would be in for 2 weeks, PFTs increase some, then within weeks, be sick again. Didn't respond to oral antibiotics, etc. Doctors decided it was time to treat the fungus even though she wasn't showing an allergic reaction.) I know I am probably all over the place, just tired and frustrated we have to deal with ID doctors again.