[trialad2]

Hello:

I am new to this site and in fact, this is the first time that I have signed on to a site to post anything. My husband has aplastic anemia, which was diagnosed in April 2008 at the Mayo Clinic. He was incorrectly diagnosed with MDS initially. He underwent immunosuppression therapy, i.e, ATG, cyclosporine, and steriods and was hospitalized for six days in Rochester. The cyclosporine made him extremely ill, nausea, lethargy, and metabolic kidney failure (also, the normal anti-nausea meds did not help his nausea...so we had to jump through a million insurance company related hoops to get Kytril for him to take). In July 2008, we went back out to Mayo and the treatment had not worked, the cellularity was 5%/95%, his T-Cells were sky high and his hemoglobin and platelets were low. We also found out that he had developed avascular necrosis of the femoral head in both hips as a result of the treatment, which was confirmed my an orthopedic surgeon back home, who told us both hips would collapse and need replacement within 2 years. In September, he went back to Mayo because of other complicaitons, sweating, dizziness, nausea, rash, etc. They could not figure anything out, but his counts were up and were low but stable. We went to the NIH in October for a clinical trial evaluation, but were turned down and not treated particulalry well. In January 2009, his right hip collapsed, much sooner then we anticipated. He had it replaced in Febraury, but during the surgery, he required immediate transfusions because his hemoglobin dropped from a 9.8 to a 7.1. He required additional tranfusions during his recovery. Our hematologist at Mayo wanted 4-6 weeks of blood draws to ascertain an "accurate" blood count reading...well, over three weeks his platlets dropped from 178 to 37 and his hemoglobin went down into the 8-9 range. His white blood cell counts are actually not low but high. Last week Thursday, he had another bone marrow extraction (his eighth in over 1 1/2 years) and we found out on Monday that the aplastic anemia was "back" (even though it never went into full remission because he could not tolerate the cyclosporine). We are going to repeat the ATG therapy again at Mayo but with a different drug then cyclosporine. He will require steroids again to avoid the serum sickness and I am afraid he will develop AVN in his knees or his shoulders. Also, I keep hearing conflicting information about a bone marrow transplant...one doctor says he is too old (48 years old), another out in Seattle told me that was not true, our local hematologist keeps bringing it up. All I know is that it is serious and it could kill him, but the ATG was so hard last time and he had so many complications. It is affecting everything, my job, our marriage, our son...I just hate this disease and everything with it...the uncertainity, the lack of substantial research and support (because it is not a "trendy" disease"). I just needed somewhere to vent about all of this and maybe this is a good place for it. If anyone out there is a caretaker or has AA, can you please let me know of your experiences and the effect it has had on your lives...I feel very alone, isolated even from my husband.

Thank you.