Birgitta Alexius' Personal Profile
Diagnosis and Neutropenia (2006)
Good health. I was in good health until I was 67 years old. I am very privileged to have a wonderful family with children and grandchildren.
I retired at 65 from a very stimulating job as a a psychiatrist. I was affiliated with the Karolinska Institute in Stockholm. For five years I worked with HIV-infected patients and learned much about our immune system. I never had a single day off due to illness. Since my diagnosis, I have always had good heart function and my liver tests have been OK.
Diagnosis. In May 2006 I went to a doctor because I felt breathless on long stairs and steep hills. My hemoglobin (HGB) was 70 and I was sent in a taxi to the Karolinska Institute. After examinations I was informed that I had MDS with severe fibrosis. After my BMB was analyzed, my diagnosis was changed to myelofibrosis. I had chromosome aberrations 12p- and X-. 12p- is a "good" aberration. X- is not so good but not bad. My WBC was low but not too low. My platelets were much too low at 65.
Since I realized that I was transfusion dependent I stopped eating red meat and tried to drink milk/tea and eat whole grain products to avoid iron overload as long as possible. I take multivitamins only once a day since C-vitamin increases iron uptake. I have been taking Folic acid, B12 and B6 since my diagnosis, for my red blood cells, and I try to avoid everything that might decrease platelets or increase bleeding.
I was treated with Prednisone at 20 mg/day (I got sleepless from 30 mg/day) without effect on the anemia.
Infections. Everything was OK for 14 months. I was having transfusions every 4th week when I got a throat infection, an intestinal infection and another throat infection during a few weeks. My WBCs never recovered and I developed a neutropenic fever in September 2007. My diagnosis was changed back to MDS. By the International Prognostic Scoring System (IPSS), I have MDS Intermediate-1.
Since then I have taken two Neupogen injections per week with good effect and tried to avoid everything that might cause infections.
My blast cells have been 0.1% to 0.2%.
Next: Iron Overload
Four generations: Birgitta Alexius (top left) with her mother, daughter, and grandchild