My name is Stacy Stewart, and I live in Southern California (Lake Hughes in Los Angeles County). I was diagnosed with Polycythemia Vera (JAK-2 positive) in early 2012. I went to my doctor for a routine physical in February 2011, and I received a call back that they wanted to test my blood again because it was too thick. I researched online reasons why my blood might be too thick, and I incorrectly assumed that the reason for blood being thicker was most likely dehydration…so I put off the blood tests until October.
I never heard back from my doctor after that, so I assumed everything must be okay. I returned to my doctor in February 2012 for another routine physical, and my doctor was concerned because yet again my blood was thicker than it should be. She referred me to my current hematologist who ordered different tests. That was when I received my diagnosis. Before my diagnosis, I had never heard of PV before. Right away, I researched it online and was shocked to find out that PV is classified as a blood cancer.
Unfortunately, my hematologist doesn’t really consider it a form of cancer. I also feel as though that he dismisses most of my concerns and questions during our brief appointments. Thankfully, I’m learning to speak up for myself–I’m trying to become my own best advocate. I’ve joined PV support groups on social media. It’s very validating to “talk” with other PV patients who experience the same symptoms or have the same questions. I’m also extremely lucky to have my amazingly supportive husband and children always there for me.
So far, my PV has been able to be controlled with phlebotomies when my numbers get to high–and I can always tell when it’s time for treatment (who would have ever guessed that hematocrit and hemoglobin would be words that I use regularly). I’m hoping that my PV can be controlled without medication for as long as possible. I know that it is a chronic disease, but I am determined to maintain a positive attitude. I am still the same person I was before my diagnosis–wife, mommy, teacher. I have PV, PV does not have me!
Contributed by Jennifer Acker
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.