Donnamarie
I am 44 y.o. female. I'm mixed Oriental Black. I have beta Thalassemia intermedia, constant spring. ( I was even born in Constant Spring, Jamaica! ) Have been needing transfusions for last five years every 6-8 weeks. My ferritin level is about 1000. I no longer want to have transfusions as the Desferal seems more than I want to bear. I am sick of doctors and hospitals. This year I went five months without transfusions, got sick and had 2 units, now two months without, now sick. My doc uses the <30 Hct to determine if transfusion needed. My Hgb is about 9 after two units. My doc referred me to another doc for chelation. He came in like gangbusters saying he would add ten years to my life. He then admitted he didn't know how, but he was going to talk to the guy who developed SQUID. Then he wouldn't return my calls, said, "I couldn't get my guy." I live in SW Florida and Thalassemia is not a common illness. One doc told me she had "seen lots of Thalassemia patients" because she worked in Mississippi. She recommended large doses of parenteral iron. My doc referred me to Hope Hospice for end of life care. They signed me up. Today, their doc (Diane Smith M. D), said that Thalassemia was not a fatal disease, they had looked it up in the Merck Manual and on the internet. I asked several times how she could say that, but they stuck to their guns said nope, not fatal. I again looked it up myself, I even have my own website on this. Anyway they are off on their medical record paper chase, which they will find a ton. I'm exhausted, I have Prinzmetals Angina and exhausted. Did I say exhausted? I'm probably wrong for giving up. I don't want new docs, more pills, other treatments. What is my prognosis now? Anyone know? Any sensible, practical advice?