I was diagnosed with Polycythemia Vera (PV), a rare form of blood cancer called Myeloproliferative Neoplasms (MPNs), in December, 2010, just 2 days before Christmas. At that time, I was just 40 years old, and my youngest set of twins was just shy of 3 years old. My other children were 6 (older set of twins), 10 and 11. I was scared to death after receiving this diagnosis. Everything I read mentioned that life expectancy after diagnosis could be as short as 10 years.
Wow, how could this be? I have always prided myself on eating healthy and exercising. I had just launched a new private practice, and life was very busy. At the time of diagnosis, I felt like life for me would never be the same. Looking back, I had symptoms of not feeling well for about a year before I was diagnosed. I lost a great deal of weight despite not dieting, and I was getting frequent headaches and an odd pressure sensation in my head. I began to have changes in my vision to the point of seeing “jagged flashes of light” in my right eye. This was incorrectly diagnosed as ocular migraines for about a year before I was diagnosed with PV. I also began to have burning in the tips of my fingers and toes. Being a physician, I knew something was not right, so I had my blood drawn at my office . My CBC (complete blood count) was markedly abnormal. My hemoglobin (red blood cell count) and platelets were way too high causing my blood to be
too thick. I immediately thought that it was a "lab error", so I had my blood re-drawn. It came back abnormal again, and then I knew something was drastically wrong. I then was referred to a Hematologist/Oncologist and ultimately was seen and diagnosed with PV at the Mayo Clinic after extensive testing and a bone marrow biopsy. I was started on treatment – therapeutic phlebotomies (removing units of blood to normalize the blood count to counteract PV making the blood too “thick”), an oral medication to help prevent my bone marrow from making too many white blood cells, red blood cells and platelets), and a baby aspirin to help lower my risk of a heart attack, stroke or blood clot, complications commonly seen in PV patients. Immediately, my symptoms began to all improve.
For the first few years after my diagnosis, I lived in fear that my PV would progress to the more advanced stages of the disease called Myelofibrosis and then to acute leukemia. Even though my disease could progress at any time to leukemia, I no longer let the disease control me. Despite knowing that there is no cure for PV and the other MPNs, I am grateful for everyday that I live and feel well. While this disease brings on many symptoms that have altered my life in some way or another, I am forever mindful how fortunate I am to be able to continue to work hard and play hard among the people that mean the very most to me in my life.
Currently there is no cure for MPNs. There are thousands of people around the world who have been diagnosed with MPNs who remain hopeful that someday a cure will be found. There is extensive ongoing research into MPNs, and I know in my heart that with continued perseverance and sufficient funding, a cure will be found and thousands of lives will be saved.
To help raise awareness and funding for MPNs, I have started a non-for-profit 501(c)3 organization called MPN Peoria. The goal of this organization is to lead the way in downstate Illinois for fundraising and awareness for MPNs. MPN Peoria’s tagline is “Making THE Difference”, and together, I believe that we truly can. I am grateful to all my friends and family who keep me lifted up and inspired to be the best person, mother, wife, friend, physician, and advocate that I can be. Before he died of acute leukemia, I once heard the famous sports reporter Craig Sager say, “What is time? Time is simply how you live your life.” Time is simply how you live your life, and I plan on spending mine dedicated to making sure others get that chance. Please help me in my cause.
Thank you so much and God bless.
Michele A. Couri, MD.
To raise awareness and funding for Myeloproliferative Neoplasms,
a group of blood cancers
including polycythemia vera (PV),
essential thrombocythemia (ET) and myelofibrosis (MF).
Our primary goal is to be able to financially support research for new treatments and ultimately for a cure for MPNs, all the while supporting and empowering those afflicted by the disease.