The call finally came~at 5:50 p.m. National Jewish lit up on the screen and it was Dr. Olson's comforting voice on the other end. She said Kaci got the last of the results from the University this afternoon and she and Dr. Katial had just finished going over them. Things were complicated though. The diagnosis was not cut and dry. According to the results and all the other tests, they believe that they will label me with Hypereosinophilic Syndrome. The problem is, regardless of the diagnosis, the treatment I need is called IL5 (anti-inter leukin5) and besides the clinical study Dr. Katial is doing, they are having trouble finding it for me. It apparently isn't readily available in the midwest. Dr. Katial is going to do everything he can in the next week to find the treatment for me and they'll get back to me with the information. She didn't give me anymore details except that I really need that treatment.
I talked with her about the meds making me sick and my "not eating" option. She was very upset (recall our "you can't lose anymore weight" conversation on day 5). She told me to stop the azithromycin for now to see if that would help. She asked me to go have a renal ultrasound done. She said there was high number of eosinophils in my urinalysis so she needed this test as soon as possible. She also said they decided I should stop the Zyflo because of Churg Strauss??? She moved on to another topic before I could ask more questions about that. I thought they thought the diagnosis was hypereosinophilic syndrome & not Churg Strauss - so why stop Zyflo because of Churg Strauss??? I'll have to ask that question later.
Next, she informed me that Dr. Ramakrishnan decided my invasive sinus surgery needs to be in six weeks. WHAT?? Six weeks is much sooner than I had expected. To top it off, the staph is a bit worse than they thought and I have to stay on this antibiotic for the next six weeks. (It's quite possible that I might not make it. I really am not strong enough to make it another six weeks on this medicine.) I asked Dr. Olson if we could change the medicine and she put in a request to Dr. Ramakrishnan for me. Of course I told her I was ok and I could handle it, and I'm sure I can. That's right, I can, I can handle this.
So, for now, I'm waiting to find out where I will need to go for treatment and how long the treatments will last. I guess I don't really know anything except that I really need some IL5 to survive.
