1. My sister has had a kidney/liver transplant due to polycythemia vera / budda chari syndrome. She is now in the
spent stage of her polycythemia vera and needs a bone marrow transplant as she is slowly going into leukemia.
She meet with the bone marrow transplant doc at U of W in Madison where she had her organ transplants. He said he would meet with her other doctors and she is they could do this. He seems to think he could but the mortality rate would be very low as he has done other patients with organ transplants. He seemed to think they might be something else they could do. She has been on Jak2 for over a year, spleen is very large....my question is would they go ahead with this if it is so high risk? have you heard of this being done in a organ transplant patient.
2. I have signed on to be a donor or to see if I match, I thought it was the needle in the hip to get the marrow out but now I see they have another way where they take my blood out but give me neupogen a growth factor. I have done some reading and see this drug for bone marrow donors is still experimental? they do not know long term side effects...in some cases the donors got cancer down the road? How do I know which procedure they will choose? can I still donate if I refuse the neupogen growth factor? how safe is this drug they don't seem to know very much about long term effects.
Thanks for your input, devonmere.