EVENTS UNFOLDED RAPIDLY in Spring of 2013 when my illness first presented itself.

I complained to my internist Dr. L about unaccustomed fatigue, headaches and shortness of breath during my annual checkup in May. He had been treating me successfully for high blood pressure for a number of years. Dr. L was curious enough to order a CBC (complete blood panel) which revealed a very high red blood cell count, high hemoglobin levels and high EPO (erythropoietin, a hormone that stimulates red cell production).

“You need to consult a hematologist,” he advised, recommending Dr. T. So I did. Confirming blood tests and other tests ensued.

In short order, it was determined that an excess of red cells had made my blood extra thick to the point where it could not pass easily through my smallest blood vessels. It was labeled Polycythemia Vera — a bone marrow disorder, not a cancer, although perhaps that’s a purely academic distinction.

You’d think having extra red cells with their oxygen-carrying capability would be like a super power. After all, that’s what blood doping was all about in sports like cycling. For PV sufferers however, the viscosity mainly prevents those cells from reaching some of their destinations within the body. Hence my headaches and shortness of breath.

Now, vera means “true,” which you might guess implies that Polycythemia comes in other flavors. A test soon confirmed that I do not possess a genetic marker associated with more than 85% of PV cases — known as a JAK2 mutation. That means my Polycythemia is not vera but secondary, the result of something else.

Luckily, a first line treatment for Polycythemia is quite simple — an old-fashioned blood-letting. They draw a pint of blood and replace it with an equal volume of IV fluid, diluting the mix and making it less viscous. The blood can’t be used, so it is discarded. Multiple treatments can bring the red count back in line.

NEXT: The Plot Thickens

©2014 James Tenser