"I still work full time. I still have lots of trips to the hematologist and wish I didn't have this disease but --- I'm still here and well -- who could ask for more?"
Patient Story: Lorraine
I worked for a hospital as Executive Assistant to the CFO from 1990 - 1997. We had to have annual exams and in 1995 they noticed my platelets were high -- around 450,000. They told me to keep an eye on them. I did for several years including 3 years living in NC.
In November 2000 I was living in Pennsylvania and was an Assistant to the CFO of a company with tons of stress. I had a regular GYN exam and blood work. When I called to inquire about my platelet count, I was told the doctor's policy was "no news is good news." I still pushed about my platelet count and was told they were "normal." In January 2001, I started having "numerous and acute TIA's" I had been feeling these "spells" for about a month before having an MRI. They kept thinking there were other reasons -- too thin and not enough protein, high blood pressure (always normal until January 201), etc. The MRI done in February 2001 found out I was having TIAs and they called me up at work at 6:30p.m. telling me to take ASA as soon as possible and come to the office the next morning. I found out later my platelets had climbed to 750,000 in November at the GYNS and up to a million by 2001.
I went sent to a neurologist and she put me through a number of tests, camera down the throat, angiogram, etc. they she sent me to a hematologist who did a bone marrow biopsy and diagnosed me with Essential Thrombocythemia. I was 51 when I was told I had a life expectancy of 10 years.
We've moved since then from PA to AZ and then to the Orlando areas in Fl and finally where we live now in The Villages, Fl. I have had several different Hematologists who would go from normal life expectancy back and forth to the 10-year diagnosis. I have been taking Anagrelide for 10 years. My platelet ts are normal. I did develop anemia and sometimes require Procrit shots. I also take an ASA every day. other than that, I'm fine! I still work full time. I still have lots of trips to the hematologist and wish I didn't have this disease but --- I'm still here and well -- who could ask for more?
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.