Myelofibrosis

My wondering has come to it's end.  My 75 yr old husband died last evening. Here at home, sitting by his side holding his hand and talking to him.  50th Aniv would have been on Dec 8th. Since under Hospis and Dr. care,  Medical Examiner came and declared him.  Per his wishes, funeral plans all made about 3 years ago, when he really started to slow down.   He choose cremation and didn't want a viewing, wanted people to remember him at his peak of life. Believe Liver failure was the cause, finally.  It was a fairly fast ending to a wonderful life,   Too bad I found this site so late.   Iowawife 

Sorry for your loss.  We are dealing with my father-in-law and he is in the last stages.  Sounds very similar.  He was originally diagnosed in '98.  Treatment commenced around 2001 with procrit shots, eventually leading to periodic transfusions and prednisone to manage the joint pain.  There has been marked mental confusion/personality changes in the last two years--probably combination of side effects of medication and/or reduced flow of oxygen from the low RBC.  His RBC's have been @10-11 the last couple of years with the help of the Procrit.  But this past December, his count was 7, and only bumped up to about 8 after Procrit/and units of blood.  Therefore, hospice care was initiated.  He increasingly has become immobile, losing weight, sleeping all the time....we are just trying to make him as comfortable as possible. 

Just sharing this story so some can see some hope...he was diagnosed at about age 63 and has been able to live and function for over 10 years....only the last 2-3 have been increasingly more difficult.  It looks like there are a lot more treatment possibilities opening up......

So sorry to hear this about your father.  I appreciate the decade you and your family had.  My mother had a rough day today, she had a platelet and rbc transfusions. But she ran a fever and her leg pain was so severe that they had to give her morphine for the first time.  Next week she is having an ultrasound on her spleen and spine to check for enlargement, bone density and tumors. Her recent bmb results showed no AML transmutation. :) Happy news there!  Her specialist says the test results did suggest myelodysplasia. These two disorders are difficult to diagnose from each other because the symptoms are so similar. So he ordered one more blood test to check for JAK2.  I hope my Mom is up and around in a day or two like she always is after a transfusion.