Now it’s the day before Thanksgiving 2012 and Dr. VL, my allergist, was sitting next to me, unable to meet my eyes. After a lifetime with difficult medical problems, I knew what that meant: She had bad, or at least very worrying, news. “Just say it,” I told her.
“Your blood tests have shown something that’s concerning. I’ve been watching it for months, and although it bounces around a bit, your eosinophil count is way too high,” she replied. She had ruled out medication side effects, or my allergies. Now we had to determine if this was an autoimmune disease, or myeloid leukemia, or something else.
I didn’t know what an eosinophil was, much less how to pronounce or spell it. I had no idea that there were different kinds of white blood cells, or that one special type seemed to be out-of-control and possibly related to yet-another serious disease.
What might be killing me?
Dr. VL explained what she knew, outlined appointments being scheduled for me with key specialists during the next few weeks, and said she was glad I wasn’t traveling during the holidays. To rule out cancers and various other diseases, the top hematology-oncologist took so much blood that it aggravated my anemia. I saw the top “nose guy,” Dr. AmS, who carefully probed my troublesome sinuses, but found no clear evidence of autoimmune disease.
Just a few weeks later, in January, I was already substantially sicker. Dr. VL added two more women to my new medical team: a top rheumatologist, Dr. MH, and an excellent gastroenterologist, Dr. AnS, who wasn’t going to just write off my problems the way the other GEs had done. We began the painstaking tests in other specialties, but no one could make any diagnoses yet, much less weave them all together.
The worst asthma ever
Then the avalanche hit. By late February 2013, I had back-to-back asthma attacks (what’s called status asthmaticus) severe enough (and unresponsive enough) to require multiple ER visits over two days. Over the course of 7-10 hours, they would get me stable and then send me home. Only to have me worsen substantially during the next day or so, requiring a repeat ER visit. After trouble stabilizing me then (and worrying that the stability was too fragile to allow me to go home), they admitted me. Very slowly over days, the asthma would begin to improve (but I’d still be extremely ill), they’d discharge me, I’d go home and a few hours later, it would begin again.
In my final ER visit during this period, they tried to stabilize me, but this time I regressed faster and further than before. I overheard part of their discussion about the amount of IV steroids they were giving me in the ER and knew how concerned they were. The steroids burned coldly through my veins as they pushed yet more into my body. It felt as if the steroids were killing me at least as fast as the asthma was.
But there was no alternative. It was the steroids … or feel my lungs give up, something they were close to doing anyway.
And I wasn’t ready to die yet. I had too much to do.
And my closets were a mess … (I am definitely my mother’s daughter.)
