Shortly after my third sinus surgery on August 1, 2000 I received news that the culture from the surgery revealed Aspergillus Flavus. I was placed on an antifungal. There was still a possibility that I would have to start IV antibiotics for osteomyelitis (bone infection) in my sinuses again. I had just had the PICC line for the last IV removed only six weeks before. Everyone kept asking if I knew of anyone else like me and I didn’t. After I started searching on the internet I found a group online through yahoo groups. Not only did I find the site and a wonderful woman to communicate with who had the same fungal sinus condition, I found a great support system made up of wonderful and caring people who were suffering like I was. To visit the aspergillus support group or the fungal infection trust: www.aspergillus.org.uk/newpatients www.fungalinfectiontrust.org
In my book I write:
The more I read, the more terrified I became. Aspergillus is not something that just goes away on its own. It is extremely difficult to get rid of. There was more than one form of Aspergillosis. ABPA (acute bronco pulmonary Aspergillosis) affects the lung. There was also the Allergic Fungal Aspergillosis (allergy to Aspergillus) as well as a colonizing form of Aspergillosis (Aspergillus spores colonize in a particular area of the body). The worst form was invasive Aspergillosis (In this form, the Aspergillus spores get into the blood stream). The invasive form usually results in death. Those were not words I needed to read especially in the depressed state I was in.
Every time I saw my ENT I asked, “Are you sure it isn’t invasive?” Each time he reassured me that he did not think so. I am on antifungals pretty much all the time because if I stop, a flare up results and the fungus takes off again in my sinuses making me very sick. While I do have to deal with this, I thank God every day that it wasn’t the invasive form.