-Please go to an expert so you too can have hope.
I moved to Georgia 3 years ago after living in Florida for 40 years. I have Primary MF. I fell off a skateboard 30 years ago and fractured many bones. One month after the surgery I ended up back in the hospital with multiple pulmonary embolisms (PE). They called in an Oncologist that told me I had a very high Platelet count and he believed it was from the multiple bone fractures. The Dr. told me I would live a very long life. No medication was given. I never worried about it and I am grateful that I did not know. I was always very active and just lived a wonderful life raising three wonderful children with a lot of energy. I never missed a game or event.
May of 2010 we went on a vacation and about 6 months prior to that I had known something was wrong. The fatigue was so bad and I could no longer concentrate at work. We came back from vacation and I got another PE and they called in a local Oncologist. After leaving the hospital I made an appointment with this new Oncologist that sat my husband and myself down and told me I was going to die soon. He asked if we could retire now and just enjoy our grandchildren. He told me I had a Jak 2 positive test and didn't have much longer to live.
After a few months we decided I should go back to my original Oncologist and he did a bone marrow biopsy right away. It came back 2++/3. I had myelofibrosis! I had never heard about this before and even though I had spent 30 years in the healthcare profession. From there, we went to a MF specialist at the Mayo Clinic in Jacksonville, FL. Dr. Solberg sent me to Seattle, WA for a bone marrow transplant consult with Dr. Yocum Deeg. No match was found. . That's when we decided to move to Georgia to live close to our children and grandchildren. I want my husband to be near our children just in case. We have had a wonderful life together. I worry about him. I have found a wonderful MF expert Dr. Elliott Winton in Atlanta. He has given me hope again. I believe that anyone diagnosed with MF needs an expert in this cancer. I pray that no one goes through what I went through in the beginning. Telling us I'm going to die soon... That Oncologist had no idea about MF. Please go to an expert so you too can have hope.
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.