Welcome, Eli.
I know what you mean about being sorry to have to be here, but this is a great group for getting first-hand information and support about dealing with MDS. If you haven't already done so, you should contact the
Aplastic Anemia & MDS International Foundation (click on Diseases & Drugs, then on Educational Materials) and order their information packet about MDS. It will help you learn more about what you and your wife can expect and how to communicate with her doctors effectively.
As you probably know, there are drug treatments for MDS that have become the first line of defense--often before transplant is considered. You'll want to know which of those might be appropriate for Nellie, what the short- and long-term side effects would be, and how they would affect her quality of life. You'll also want to ask about the impact of any treatment on her lupus.
It sounds like she is responding to Procrit but is still transfusion dependent. If she is going to continue receiving blood and/or platelet transfusions, you want to be sure that she receives "irradiated" and "leukocyte-reduced" blood products. These are processes in which the blood is treated to remove antibodies that could cause a reaction when the patient receives the transfusion. In the case of MDS patients who might receive many transfusions during their treatment, it is important to limit their exposure to these antibodies so they don't become overly sensitive to blood products.
If her white count is also low, ask about precautions she can take to lower her risk of infections.
Don't be afraid to ask the doctor to repeat information or give more explanations until you are sure you understand--and the doctor should be willing to do this.
Please don't hesitate to post your questions and concerns here. There are many members who collectively have more experience dealing with MDS that most doctors do--and we are very willing to help.
Regards,
Ruth Cuadra