Hi All,
I would like to share my story, and hopefully find someone who can relate. In August 2010, I found out I was pregnant. I was very tired, but was always told that was normal. I was working for an endocrinologist (Diabetes doctor) at the time. Everyone there kept telling me how pale/gray I looked, but the doctors didn't seem to think it was a big deal. My legs started to get petechiae (at the time I didn't know that and the PA at work said it looked like a pregnancy rash, in which there was no treatment).
On December 24, 2010, our car got stolen. In it was all of our personal belongings, including my purse, my husbands wallet, our cell phones, cameras. We were at the beach and didn't want to have to babysit this stuff. Anyway, my husband needed to get a new phone right away, so the following Monday, we headed downtown in our other car to get a new phone. Well, then we were rearended. Per hospital protocol, they wanted me to come in for 4 hours of observation because I was 6 months pregnant. That is when the news came. My platelets were 25000, my hemoglobin was 8.1, my WBC were normal but low for a pregnant person, my RBC were low. They wanted to do an immediate transfusion, but decided to wait until I saw a hematologist. The next day, we saw the hematologist and confirmed that I had aplastic anemia, but the biopsy would tell us for sure. The biopsy came back confirming mild aplastic anemia. I soon progressed to requiring blood and platelet transfusions, eventually needed 2 platelet transfusions a week and 2 units of blood per week.
Thankfully, I delivered my son in March without any complications. 3 days after leaving the hospital, I was back in again for neutropenic fevers, my ANC had dropped to 290. My doctor was hopeful that the AA would go away after I delivered, but it didn't. At this point, they told me my only treatment option was a bone marrow transplant. My brother was an exact 8/8 match thank goodness! So I had to move to Kansas City to get treatment. My family and my husband's family are in Missouri, so I thought going to KU to get my treatment was my best option, since I and my son would require caregivers.
So of course, KU had to repeat all of the testing. It was then that I found out my AA had progressed to MDS and PNH as well. I was treated with Cytoxan, Busulfan, rabbit ATG and Methotrexate. My transplant occurred on 7/27/2011. I am at Day 92 and doing very well. We have had a couple of scares with GVHD, but have not been formally diagnosed with it. My counts have been pretty study, though last week everything had dropped. Usually it is just 1 or 2 of the counts that will drop slightly then come back up the next week. Other than that, I have not been sick or had any other complications.
I have a blog that I write about my experiences at
www.andrya-survivingaplasticanemia.blogspot.com if you want to read or learn more about me.