My name is Vivienne and I have PV. I was diagnosed in April 2001 and set out to find out all I could about this rare illness that I had never heard of! I was referred to a local Hematologist and have been very satisfied with the care and advise that I have received from him. I have also visited Dr. Spivak at Johns Hopkins and volunteered for a Clinical Trial at NIH in Bethesda Maryland.
Throughout the ten years that I have had PV I have been very fortunate to see great strides in our knowledge about MPNs. During this time I gave blood for the study that found the genetic mutation which is carried by almost all PV patients (97%). I am JAK2 positive and heterozygous. Working closely with my doctors, and reading numerous articles I decided that I would do “as little as possible for as long as possible”. I took aspirin and did phlebotomies until last year when I had two serious bleeding episodes and it was obvious that I could not continue without taking some medication to control my counts.
I am taking Hydroxeria a medication that has a track record and has worked well for me. I have found with PV that each person responds to the illness in different ways. I know that Hydroxeria is viewed by some as a medication that can over time lead to Leukemia –however I take the view that the illness itself might be the culprit not just the medication. I had serious auto accident when I was 22 and every day is a blessing (and now I am 66) so I am not afraid of death. I believe that it is all about the quality of life.
I work full time and have a wonderful life. I do not let PV pull me down. I eat properly, exercise and have a wonderful family. My advice to anyone who might read this –do not become obsessed by these illnesses –go to a University Level Hematologist and take their advice. If you can go to a MPN specialist do it –and work with your local doctor to implement their suggestions. Read all you can and be your own advocate. Most of all join a support group!!
Love your family and friends and love yourself-you have many years ahead of you. This is a chronic illness not a death sentence. Do not believe those who give you a time frame. None of us knows when we will pass from this world. Just enjoy the day and do not let PV or any of the MPNs spoil your day.
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.