All during her twenty years of PV and then MF, she stayed active in charitable volunteerism.
Darlene (Dar) Baugus was raised on a farm, worked hard all of her life, and just as she was taking a well-deserved retirement in 1994, she was diagnosed with Polycythemia Vera. She still had a good quality of life for the next ten years, requiring a phlebotomy about every two months to keep her hematocrit under control.
Then, in 2005, her PV transformed to MF, and her quality of life began to deteriorate as the result of a series of medical crises. Shortly after she was advised to have a stem cell transplant, she began taking Revlimid which had just been FDA-approved, and that gave her three years of good quality of life before it stopped working. Then after another series of crises, she had her spleen removed, and that gave her one and a half years of good quality of life. She could never qualify for a clinical trial because her platelet count was too low. After struggling with MF for about ten years, it finally transformed into Acute Myeloid Leukemia which claimed her life after eighteen months.
All during her twenty years of PV and then MF, she stayed active in charitable volunteerism. As an RN, she was typically involved with providing medical assistance to the medically indigent. After her AML diagnosis she went on a palliative chemotherapy protocol which finally required her to stop “giving of herself” to others, and begin to conserve what little energy she could muster.
Throughout her MPN journey, she was constantly aware of the efforts being made by the MPN Research Foundation and others to develop new medications for the benefit of MPN patients. She never lost hope that a cure might be discovered before her journey ended, but at the end, she was just happy to have had the time with her family and friends that she did have. She died from the effects of AML on June 4, 2016 at age 79. Her obituary requested donations to the MPN Research Foundation in lieu of flowers.
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.