Hi,
I am a 38 year old man with Severe Aplastic Anemia. I am a member of the AA Toast Forum and there has been some discussion about this forum there, so I thought I would check it out. Apparently this is a new website and I am the first person to post regarding AA.
I was diagnosed with SAA in October, 2004. Prior to diagnosis, I had low platelet counts. I found out that my platelet count was low in 1991, at age 23, when having a physical for the Peace Corps. My low platelets prevented me froming going into the Peace Corps, but did not otherwise disrupt my life in any way until many years later.
From 1991 until 2003, I had regular CBCs and underwent 3 bone marrow biopsies. During this time my platelet count went from 50,000 to 20,000. In 2003 my red blood cells and white blood cells started to decline. I became very fatigued and complained to my doctors. I underwent another bone marrow biopsy in September, 2004 and was diagnosed with Aplastic Anemia in October, 2004. At this time, I continued to have enough RBCs and WBCs to live normally. I saw several bone marrow specialists and went to the National Institute of Health in Bethesda, MD. for another opinion. All of the doctors I saw concurred that I had Aplastic Anemia, but that it was moderate.
In July, 2005 I went on vacation to California. On my second day there, I had difficulty breathing, talking, walking, and felt as though I was going to die. I had no idea what to make of it and was very frightened by my symptoms. I cut my trip short and returned home to see my oncologist. I was sent to the hospital for my first RBC transfusion as my hemoglobin was 8.0. This was the beginning of my bout with Severe Aplastic Anemia.
I continued to have RBC transfusions every 7-8 weeks until January, 2006. I went back to the NIH in January, 2006 and was found eligible to participate in a study for patients with SAA. In this study, patients are given one of three treatments which are chosen randomly by a computer. I was given rabbit-ATG and cyclosporine. I had a very difficult time on cyclosporine. I had many side effects and even developed tongue cancer as a result of my cyclosporine level becoming toxic. After 5 days of ATG and six months of cyclosporine, it was determined that I had no response to the treatment. During that time, my transfusions got closer and closer together until I was getting them every 12-14 days.
In July, 2006 I returned to the NIH to undergo treatment with Campath. Campath is usually used for people with AML (Acute Myeloid Leukemia). I received Campath for 10 days. It was much more tolerable, for me, than ATG and cyclosporine. It has been six weeks since I returned home from the NIH and I am still transfusion dependent. I receive RBCs every 2 weeks and have had 3 platelet transfusions. My counts continue to be very low, but this is expected after receiving immunosuppressive therapy.
I am interested in hearing from anyone who has SAA. If you have not checked out the AA Toast Forum, here is the web address:
http://aplasticcentral.com/aplastic/...n=topics&fid=2
My blood counts as of this week are as follows: WBC - .8, ANC - too low to measure, RBC - 2.75, Hgb - 8.8, Hct - 26.6, Platelets - 10k. I received 2 units of RBCs after this CBC as I become very symptomatic when my Hemoglobin goes below 9.
I should note that I am married with two children (daughters). I work full-time and try to lead as normal a life as possible. I have found forums such as this one to be very helpful in many ways and feel that it is important for people with bone marrow failure and their caregivers to talk to each other about their experiences and treatments. I hope that this forum becomes a useful tool for all of those suffering from bone marrow failure.
I look forward to hearing from others and welcome your comments/responses. Best wishes.
Mark