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.