My mother-in-law also has this disease. The doctors don't know what to do as
they have tried everything they say they know how to do. They tried Procrit,
an experimental drug(?) but it didn't work. Her spleen is greatly enlarged
because it is making red blood cells for her. Transfusions are not as frequent
as you state in you letter. Probably, once per month at this point.
The doctors are now trying steriods. If that doesn't work, they'll try male
hormones because males product more red blood cells than females. That's what
they say. Her white cell count recently sky-rocketed. Do you know what that
means. Her heart also was at 240 beats per minute.
She maintains a blood count between 10.2 and 7.6. Once she got to 6.9. Boy
that was really stressfull. Finally, got her to get a transfusion.