went to NIH
I went to NIH and Dr. Neil Young said that I have MILD aplastic anemia, not moderate-severe like the docs here told me. I don't need any treatment right now, and am so grateful that I went to the best place for a 3rd opinion. He said its possible that I have had it since before my daughter was born, and that my previous docs didn't know what they were looking at! I'll be getting monthly cbc's and yearly bone marrow biopsies, as long as I don't get worse. I just worked three 12 hour shifts in a row, and have been having shortness of breath all day today at work, so I won't be working 3 days in a row anymore!! Thanks for all ya'lls support, and if anyone out there also has been living with mild aplastic anemia, I'd love to hear from you! Also, anyone else that wants to get in touch. Thanks again, Linda
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.