Hi Andy,
Yes, I've seen Dr. Thompson at Children's Memorial several times, but I am not eligible for any experimental studies because I do not have thal, and the incidence of my disease is even more rare than thal so no researchers are recruiting patients for it. I was managed largely as an intermedia, and am now being managed like a major ... whereas I should have been managed like a major all along, and have now run into a bunch of problems. As a result I have some of the things intermedias experience when they are not adequately transfused and chelated, namely very large bone marrow expansion and very high liver and heart iron content even though serrum ferritin levels have remained reasonably low. It is a case of negligence in my instance, and one that could have been managed much better.
It should be noted that while iron is perhaps the number one killer of patients, anemia for patients who have been inadequately transfused also contributes greatly to death, and so the tests of anemia on the heart should be identified as well (similar to what T2* tells you if you are at risk for heart failure due to iron overload). If it is not LVEF, I am not sure what it could be then, since a holter moitor will not show it, and neither will an EKG, in my opinion. If anyone knows the answer, it would be greatly appreciated.