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Old Thu Apr 16, 2015, 12:51 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi dsandrock91,

I would strongly encourage you to find a way to the Cleveland conference somehow. The conferences are invaluable for talking to experts and meeting many people like yourself who are faced with the same disease.

Also, you should check out the aplastic anemia videos at:
https://www.pathlms.com/aamdsif/categories/363/courses

They are excellent and some start out pretty basic in describing the disease and treatment options. You will be learning the lingo in no time If you find a good one that is easy to understand, share the link with your family so that they can understand what is going on with you. It helps to have the support of family and friends but often times they don't understand the seriousness of the disease because "you look fine".

If your ALC and ARC are good (from your CBC), that is a very positive sign that you will likely respond to ATG/Cyclosporine treatment. Being young is also a very positive thing. If you are transfusion dependent, you don't want to delay treatment even if you don't fit the exact definition for SAA, in my opinion. If you are not transfusion dependent and not SAA, then watching and waiting is a reasonable approach. Sometimes aplastic anemia is triggered by a virus or chemical and the body is able to fight it off eventually. Although watching and waiting is stressful, if your body can fight back on its own, that is really the best case scenario. It will take time though...

You mentioned that you were anemic in another post. If your BMB shows absent iron stores and you are not getting RBC transfusions, then you need to talk to your doctor about supplementing with iron. This is especially true if you are a young female with low platelets! Ask them to write you a prescription if you don't know how much to take, and be sure that they monitor the iron levels in your body. This will help your energy level tremendously and may bring your HGB up to normal levels.

Also, I think you mentioned that you have health insurance issues. if you are under 26, you should look at getting on your parents' health insurance coverage.

Be strong
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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