I am an Essential Thrombocytosis diagnosed artist and Mom from Port St. Lucie Florida (originally from Jackson Mississippi). I have had a twisted journey following my diagnosis that I would love to spare other from and I will share but I believe my most important message to others is the following. The brain believes strongly the message it has inputted. Have you ever heard of the “placebo effect”? It’s important to give your brain positive affirmations and input. Do not live in a diseased state of mind by allowing yourself to believe “I am sick” or dwelling on too much worrying over symptomology online. I believe if we live in a “sick” state of mind and believe “I am sick” we really will be. And perhaps more so than if we can put ourselves into a healthier place. Now for my story…..I was confused when I got my diagnosis. I was told I had “sticky” blood. I went to the first of a line of doctors who knew nothing about my condition. THERE ARE MANY WHO DON’T. I learned to not believe everything I hear and to look for a good doctor (Listen to your gut feel on how it’s going with the doctor you see). This first doctor slapped me on Anagrylide then later Hydroxurea. He was alarming and told me to take several Hydroxurea tablets in the first days to reduce what he believed to be a dangerous platelet level (985). My body could not tolerate either and I spent a month with this doctor..(allergic…dangerous reactions requiring me to have several ER trips and one expensive ambulance ride) I missed many work days (no pay…I’m a single Mom so this was really rough for us)…..
My platelet level shot up even higher due to the medications being removed (there is a rebound effect with ET patients that happens when your level is reduced…your body goes a bit haywire trying to re-establish your high level when treatment is removed). The doctor declared it an emergency and put me in the hospital and ordered blood thinners to be injected into my abdomen every 4 hours (later found out this could be life threatening. ET patients can be a bleeding risk and I should have NEVER had blood thinners injected and this could have caused internal hemorrhaging)…My journey with this doctor ended with him distressed and telling my sister that I MUST pursue a Mayo clinic doctor that my level was an “emergency!”. I then went to a doctor in Miami who wanted to put me on Interferon Alpha. I did not feel that this doctor was on the right track and saw another physician in Jupiter Florida (how I wish I could share these doctors names) who sat me down with a sad look on his face and told me I had 10 to 15 years to live! But to give me a ray of hope he stated “but I’m certain they will find a cure in the next few years….I really believe that!” (all said with a sad and sincere look on his face mirrored by his nurse) I got in my car and, in shock, dialed my boyfriend to share this news…his response “I was really hoping for more time with you”….Now are you guys ready for the happy portion of this story? All of this glum information was shared for a reason. DO NOT LET THIS HAPPEN TO YOU…….
I, after being given a botched bone marrow biopsy by this doctor (have mild nerve damage on my right leg)…Even though his office walls were lined with special awards certificates and newspaper write ups about the miracle worker and brilliant doctor he was….I decided that I needed to go to another doctor (listen to your gut feel….I knew I didn’t feel like someone who was that sick…I felt healthy…..save the times these doctors messed with my body system introducing meds my body couldn’t tolerate)..I went to the University of Miami….Come to find out these doctors had not read up on ET for perhaps over 10 years probably longer. My platelet level DOES NOT require those heavy meds….Only a simple baby aspirin twice daily! ET is condition with a FULL LIFE SPAN expectation. I found out that the doctors in Miami considered me low risk. Mind you, if my platelet level creeps to 1 mil 500 I must be put on interferon alpha. I DO research ET and get my MPN Forum magazine updates. But I don’t dwell in a sick state of mind. I read that there is much research and an expected positive outcome…an example is the CRISPR research that has already been used to cure a baby with leukemia. I am wishing all of you a POSITIVE and HEALTHY journey. Don’t allow yourselves to believe everything you hear and if you have a negative, and fright inducing doctor look elsewhere….It may take you a few doctors to find the right fit. I have found a brilliant local doctor and feel that I am in expert hands. I plan to visit Dr. Srdan Verstovsek at MD Anderson this summer. My plan of action is to go to someone who specializes in MPNs and have this doctor keep my local doctor current in Essential Thrombocytosis care.