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Old Mon Jul 6, 2015, 09:31 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Greentea,

I'm sorry your sister has relapsed after all these years. I hope your family can identify the choices you have and decide which is best.

Did the doctors specifically say that your sister is strong enough for a transplant despite her heart valve issue? If so, what makes her think she knows better? If they haven't addressed that concern, they need to consider it now and give her straight answers about the chance for success based on her individual circumstances.

Has she talked to the doctors about the possibility of doing anti-lymphocyte globulin (ALG) treatment again? She's older now, and children as a group are the best responders to treatment, but it can work for adult relapses too.

I'm surprised that she couldn't get a transfusion with her platelets so low. If it was a hospital department that refused her, then she may just need orders from the doctor to the transfusion department.

It's not unusual to find that hospitals or physicians recommend immunosuppressive treatment or a stem cell transplant. That's what their research tells them can work. Few institutions offer holistic treatment services, in part because these approaches are harder to test rigorously and because of a lack of sponsors for such research. There are exceptions, like the Complementary and Alternative therapy program at the Cleveland Clinic here in the U.S. I don't know what's available in Sydney.

Before you consider traveling far and wide, I suggest trying to get better answers from your sister's doctor(s), or seeking a second opinion locally.

Good doctor-patient communication is very important but not always easy to arrange. Doctors can misunderstand patients just as easily as patients can misunderstand doctors. It can help if you outline specific questions that get to the heard of the matter, and bring a written list to the next appointment. If doctors make a treatment recommendation, have them tell you why. If they don't mention an approach or don't recommend it (e.g., ALG or diet changes), have them tell you why.

Finally, is your sister talking to a hematologist with aplastic anemia expertise? You want the more knowledgeable doctor you can find for this disease.
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