Taking Charge of Her Polycythemia Vera: Aimee’s Journey With PV

Taking Charge of Her Polycythemia Vera: Aimee’s Journey With PV


My name is Aimee I was diagnosed in October 2013 with
polycythemia vera it was a long journey had been going to the doctor since 2008 was
very very frustrating because I had symptoms but because I had no diagnosis
I didn’t know how to treat the symptoms and I had been passed around from doctor to doctor
specialists to specialists trying to figure out what was going on I was seeing a
rheumatologist I saw a general practitioner, I saw a neurologist, I saw gastroenterologist all of these people were treating symptoms but nobody
told me what was happening with my body. When I was diagnosed with PV after almost six years
I finally had an answer to what had been going on for so many years I felt ok
maybe I’m not crazy after all you know maybe what’s going on with my body is a
real thing I had finally figured out what was causing all of these symptoms
but then also then I think what next My hematologist that diagnosed me was very
knowledgeable but I needed someone to find out what was causing everything
that didn’t happen until I started seeing a specialist the pivotal point for me was when I became my own advocate. I found this specialist myself I went online and I put in the information for an MPN
specialist in this area seeing specialists is really what turned this
around for me. He sat down with a notebook paper and pencil and did a diagram of how your
bone marrow works how your blood works how everything works when I have more knowledge about
something I feel more comfortable I always ask questions I have a list when I go in
so he knows that he is going to spend a little time with me I have a lot of information
that I track from time to time I’ve gotten to where I keep a diary with
where my numbers are my last visit and How I am feeling that month to see if
there’s any correlation. My MPN specialist charged the numbers as well so it’s you
know a concerted effort one of the first things I would tell
someone who was newly diagnosed with PV is to be your own advocate that was very
important for me because if I had just kept going from doctor to doctor I may
still be you know undiagnosed and thinking I’m losing my mind it wasn’t
until I became an advocate and started you know looking into what was going on
and look into finding my own specialists that things really started to come
together for me specialists is going to be pivotal in
your recovery and your maintenance of the disease and they are so much more
knowledgeable about what causes it and I’m in control more because I know what’s going
on a body that didn’t happen until I started seeing a specialist it changed
everything