I set up an appointment to see Dr. Olivier at the National Institute of Health in Maryland for late July. I made the appointment months in advance and it was just supposed to be an opportunity for me to "check-in" with the Mycobacterium guru. For the past 4 1/2 years I have been steadily battling first mycobacterium abscessus and then mycobacterium avium complex (MAC). MAC is the lung disease that patients with AIDS typically die from...it's rare and difficult to treat. People with CF are susceptible as well. I took 4 antibiotics for 3 years to combat the MAC and even though I was never able to completely eradicate it, I thought I had knocked it into it's place.
It turns out I was wrong. The MAC is back... My CT scan from NIH showed new infiltrates and nodules in my upper lobes. Basically, the MAC is eating it's way around my lungs. I'm so stinkin' frustrated. I worked so, so hard. All of those pills, the IV's, the precautions...none of it worked this time. I have to start all over again. I'm currently back on 4 antibiotics, I may eventually do a course of IV's and there's a possibility I will need to spend 3 days in the ICU being desensitized to an antibiotic I'm allergic to, but need to take. I have an appointment with my local team on Thursday. We'll figure this out. It's certainly not the end of the world. It just gets a bit exhausting...
One a positive note, I turned 39 last week...who would've thunk. Every year is such a blessing! I also sent my kiddos back to school last week. I haven't written in this blog for a long, long time. These little guys have grown a lot since then! Emma started middle school (6th grade) and Jake started 3rd grade.
