Living with Polly (Polycythemia Vera)

"Honey, does Polly make my blood look thick?"
This is the question I ask my friendly lab tech when I get my blood drawn every 3 to 4 weeks.
Or I might change things up with "Pick a vein, any vein" like I'm a Las Vegas card dealer.
We check the PT/INR to keep it between 2.0 and 3.0 and adjust the coumadin/warfarin (blood thinner) accordingly.  The CBC (complete blood count) also checks the hemoglobin and hematocrit (I feel much better when the hematocrit is under 42) along with the platelets and white cells.   When the hematocrit climbs, I need to increase the hydroxyurea (HU) dosage and sometimes add a phlebotomy to the list (draw off a pint of blood).

I try to keep things light and remind the the stickers and myself that I'm human.  I see so many people who pale as they get close to the needles -- they obviously aren't "regulars."  So why not lighten the mood?

Aside from the fear of more blood clots, the daily joys of living with Poly are the "side affects" -- fatigue, anemia, head sweats, headaches, and migraines.  I differentiate headaches from migraines because there is a difference.  I can function with a dull headache.  I've done so all my life.  But when a migraine hits, I'm looking for a guillotine.

I recently spoke with a neighbor who is an oncologist/hematologist with PV patients and he remarked that most PV patients are asymptomatic and live normal lives.  I was so surprised -- it is my impression while many can continue to work, many of us are struggling.  He suggested that patients with more symptoms like myself seek out resources and find others (as I have through the MPD Foundation, MPDonline, MPD Chat, etc.).

So there's some food for thought.

1 comment:

Mo said...

A Google search for other bloggers who write about PV brought me to your that you call it Polly! Makes it seem less terrifying :-)

I occasionally write about my experiences with PV here...

Sorry about the migraines! Luckily, I haven't had a single one since I got my counts under control (knock on wood)...but I do remember them well...hang in there.