High BobbyJD,
Here is the contact information for the coordinator of the AAMDS support group. They meet monthly in or near New Brunswick, NJ.
Linda Rothstein
T: 732.605.0049
Email:
rothstein-sosnick@live.com
I agree that is an inspiring story about the woman whose counts recovered on their own.
I'm confident I have excellent care in Colorado. My doctor is great on all levels, as is the whole hematological team at the hospital here (CBCI-PSL), and I believe they saved my life.
They are supportive of my interest to get a 2nd opinion from a research institution. CBCI-PSL is a top notch treatment center for AA, but I think there's something to be said about consulting a research center at times, especially since AA is so rare, and new developments are on the horizon. But anyway, I feel secure that option will be open if my counts drop more, which I sure hope they don't!
I felt great during and after climbing the mountain with my son today, so I suspect my red blood is holding in.
I haven't started a cyclo taper at all in the past 17 months, because I responded so slowly to ATG. My counts didn't rise much until months 7-10. My doctor planned to start a taper at month 11, then then they started slipping some again.
Best wishes to you and your sister in fighting this. It is great that you are on here asking questions on her behalf, and I really appreciate that you help us by volunteering at AAMDS.
Kevin