Saturday, December 24, 2005

Happy Birthday Mom 12/24


My mom was born December 24, 1934. She died September 1, 1999 at age 64. Mom would have been 71 years old today. She had been diagnosed with a 'rare' bone marrow disease called Myelofibrosis less than a year before she passed away. Her marrow developed scar tissue formation and needed many blood transfusions because her bone marrow wasn't producing enough red blood cells. Eventually the white blood cells took over and she developed acute Leukemia - she was in that 10% category ( read below). She was not a candidate for a transplant because her overall health was not good and she was 'too old'. She had COPD ( chronic Obstructive Pulmanary Disease), Emphysema ( was on oxygen 24/7) and an abdominal aortic aneurysm which was being carefully watched. There is no cure for Myelofibrosis - although allogeneic stem cell replacement in younger patients is a potential curative treatment. The last time I took her to the hospital for a transfusion, which was the end of August, 1999, the doctor took me aside and said he needed to transfer her to Mercy Hospital immediately. That's when she was diagnosed with the luekemia. I was told they could continue to give her transfusions daily but she would not make it to Christmas.
My mom was now aware of what was going on - I think she always knew or at least suspected and she had told me she couldn't take any more pain. It was a horrible and difficult decision - but one I knew she wanted - so we instead opted for 'comfort measures'.
Within a couple days, mom left us to finally find peace.
Mom ~ we miss you very much, you are never far from our thoughts and you are in our hearts. Happy birthday Mom.

How common is idiopathic myelofibrosis?
Idiopathic myelofibrosis is an uncommon disease that affects about 2 out of 1,000,000 people. The disease affects both men and women. It is usually diagnosed in people between ages 50 and 70, but can occur at any age.
What causes idiopathic myelofibrosis?
Idiopathic myelofibrosis is one of several clonal diseases of the marrow. The term clonal means that the disease originated with a change in the DNA of a single cell. The cause for the change is unknown.
Myelofibrosis can be a familial disorder, although this is a rare occurrence.
What is the prognosis for idiopathic myelofibrosis?
The average survival time after a diagnosis of idiopathic myelofibrosis is about five years. However, about 20 percent of patients are still in treatment 10 years after diagnosis with idiopathic myelofibrosis. Prognosis factors that may be indicative of better outcomes are: absence of abnormal chromosomal changes, hemoglobin levels above 10g/dL and younger age.
About 10 percent of persons with idiopathic myelofibrosis are at risk of developing acute myelogenous leukemia. The presence of an abnormal karyotype (chromosomal changes) increases an idiopathic myelofibrosis patient's risk of developing leukemia.




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