Leslie,
Good for you on calling bull when the doctors said if your Mom wasn't better in a week, they'd consider treatment a failure.
I was still getting blood transfusions 3+ months post ATG, and I saw my most significant improvement 7-9 months post-ATG. 2+ years later, although I still have lower than normal blood counts, my condition is stable and I have my life back. I'm convinced my patient persistent doctors, who have decades of expertise in aplastic anemia and did not give up on me, saved my life.
I am very sorry to hear what you and your Mom are going through. I am very sorry to say this, but from what you have written, I fear Baptist Health in Jacksonville, Florida has no business treating severe aplastic anemia patients. I hope I am wrong, but the things you say lead to believe they either don't know what they are doing or are lying to you.
I know these are strong controversial words, but a fury has built up inside me hearing of others with my blood disorder suffer at the hands of physicians who are ignorant of the proper way to treat it.
I would urge you to contact Dr. Neil Young's office at the National Institutes of Health. Your mother may be too sick at the moment to make it to their offices in Maryland, but perhaps they could consult with current her physicians as to her further treatment and supportive care. I believe this would be the best contact person:
Olga Rios
olga.rios@nih.hhs.gov
301-496-4462
Here is a recent statement by Dr. Neil Young, the great man who pioneered the ATG treatment your Mom and I received. This treatment, when administered correctly, when the patient is supported diligently for several months post-ATG, has saved thousands of lives. Note at the end of the video that he urges patients to seek treatment from a center experienced in treating aplastic anemia as soon as possible:
http://www.youtube.com/watch?v=02rvFOFYOVw
Another wonderful resource is the Aplastic Anemia & MDS Foundation (AAMDS). Leigh Clark and Martha Crews are great contacts there, and they have a wealth of information online about fighting Aplastic Anemia.
clark@aamds.org
crews@aamds.org
http://www.aamds.org/
(301) 279-7202 x103
I really hope I am wrong to speak so harshly of your Mom's hospital, but I wanted to convey a sense of urgency here, that there are experienced professionals out there who can help you navigate the medical system to ensure your mother gets the treatment she deserves.
Beyond all this, remember not to blame yourself for mistakes made by doctors. You were put in a position where you had to trust your Mom's current physicians. You personally have made no mistakes here, and the simple fact that you are on this forum asking these questions is a testament to your care and love for your Mother.