Jan 30, 2011 - 6:26 pm
What do I do now? I lost my husband on January 16, his 63 birthday to a disease I had never heard of. Myelofibrosis. He hasn't been sick other that an occasional cold in the 35 years. Hasn't been to a doctor in 25 years. He started to get sick on Christmas day. Urgent Care said it was just a sinus infection with slightly low blood preasure. Gave him a Z pack and said he would be fine. Jan 2 he is in emergency room. They said he was anemic, gave him 3 units of blood, said he had a heart attack from the stress and has pneumonia. Checked him into ICU. Over next two weeks he had every antibiotic made. Saw so many doctors I couldn't keep them straight. Every test possible. Second week they did a bone marrow biopsy. Said he had myelofibrosis. They still couldn't figure out why he couldn't breath and where his blood was going. He kept getting transfusions. By the 15th he couldn't breath without help so they put him on a ventilator (which he didn't want). They did a scope of his lungs to see what was causing his breathing problem. Doctor said they found where the blood was going. Since his blood wasn't clotting he was bleeding into his lungs, which was not a normal occurance with this disease they said but it does happen. They gave him 24 hours. We removed the ventilator, and he passed at 1:25am January 16, his 63rd birthday. We were to be married 35 years in June. We were just gifted with our first grandchild in September. A boy. Another grandchild, a girl, is due in June and he will miss another daughters wedding in September.