"In my opinion the key to polycythemia vera is to listen to your body. You may have some tough days, but you must persevere during those days."
Patient Story: Rob
PV: Just Run With It
I just wanted to pass on some of my experiences with polycythemia. I was diagnosed in November 2009. My mom was treated for 20 years with polycythemia vera, and died from lung cancer which I'm told is not related. She was on hydrea most of that time.
I am a 54 year old athlete. I run numerous marathons a year and currently try to put in 40-60 miles per week. There is no doubt that my blood dictates many of my workouts and races. It may affect my times a bit, but not my resolve to keep on training.
My training for the May 1 Eugene Marathon was horrible. My long 20 mile runs were slow and sluggish for 6 weeks up to the race. I was worried.
My hematocrit a week before the race was in the mid 50's. No wonder, I was sluggish. I ended up having two phlebotomies over the next five days. Though the phlebotomies made me quite tired for the two days leading up to the marathon, I was able to run and finish the 26.2 in great fashion. Next up is the Chicago Marathon in October.
In my opinion the key to polycythemia vera is to listen to your body. You may have some tough days, but you must persevere during those days.
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.