My P-Vera Journey
A little intro to my story… I have been a very active 73-year-old, walking, biking, hiking, etc. I do not like to go to doctors and was always healthy, so my visits were few. I was hiking with my daughter in the foothills to hear our winter home and she said “Mom, you seem to be short of breath and not hiking your usual (I was always ahead of everyone). My reply "I’m 72 and I have a right to be slower!”
My EKG was funky
A few weeks later as we were hiking I was struggling and could not get up the incline to her house, she literally goes behind me to push me up the hill. This was a Friday evening, so I waited until Monday to call the doctor. I was advised to go straight to the heart hospital which I did, this was the very beginning of COVID-19. I was told in ER that my EKG was FUNKY (whatever that meant). After scans, I was told my lungs were full of blood clots and I was admitted to the heart unit. I was discharged after 3 days, really no answers, just of blood thinners. My cardiologist said I should see a hematologist, but I could not get an appointment until August and this was March.
Diagnosed with polycythemia vera
We decided to go back to SD, but I was not well enough to travel until the end of May. My hematologist did a bone marrow biopsy and confirmed the diagnosis of Polycythemia Vera. I was put on Hydrea and had phlebotomy for 3 weeks to get my hemoglobin down. But since then it has been a rollercoaster with my platelets. I had finished 6 months of blood thinners, so quit taking them, only to have more pulmonary embolisms again. So back to blood thinners and baby aspirin. I am having a hard time keeping my platelets within range, which gives me severe headaches when they are jumping around.
I would like to know if others with PV experience the same thing. I am wondering if I need to try another drug to control it…as you all know it is very frustrating. When my platelets are within range I feel great!!! Being this is a very rare type of blood cancer it is hard to get support.
Thanks, AM CHAI
Do you worry about relapse?