a·plas·tic a·ne·mi·a/āˈplastik əˈnēmēə/

Noun: Deficiency of all types of blood cells caused by failure of bone marrow development

Friday, June 17, 2011

My Story

On December 24, 2010, my husband and I were snorkeling up at Shark's Cove on Oahu when our car got stolen.  It had our whole lives in it, my purse, his wallet, both of our phones, camera, camcorder, my Christmas bonus, our house keys.  We were devastated.  We didn't even have money to take the bus home.  Luckily, some tourists gave us some money for the bus and a meal once we got home.  At the time I just turned 25 weeks pregnant.

So what does this have to do with anything about Aplastic Anemia (AA)?  Because of this, Ryan needed to get a new phone.  So the following Monday, December 27th, we decided to take a trip down to the Ala Moana mall to go to the Apple store.  On the way, we were rear ended in our other car.  What luck, right?!  Because I was pregnant the hospital wanted me to be observed for 4 hours to make sure everything was ok with the baby.  He was fine and as far as I knew, I was fine too.  We were heading out after the nurse told us we could go and the Physician's Assistant (PA) taking care of me stopped me and told us they just got my labs back and we needed to repeat them.  She asked if I had any bruises.  I really didn't at the time, but I had noticed that my bruises took a long time to go away.  At my previous OB appointment, the Nurse Practioner said that was not out of the ordinary.  I did show her my legs.  Over the last couple of weeks, I noticed that my legs were kind of red and it looked like a rash, but didn't have any symptoms of a rash, like itching, bumps, etc. The PA at work looked at them and told me that it was probably nothing, most likely a common rash that pregnant people get.  So I didn't worry about it.  Come to find out this "rash" was petechiae.  These are little red dots caused by low platelet counts.  So if our car hadn't gotten stolen, we wouldn't have gotten into an accident and thus might not have been diagnosed until it was too late.

They retested my blood and it came back the same.  I had low platelet count (plt) and red blood cell count (RBC).  My white blood cell count (WBC) was low too for a pregnant person, but still within normal ranges.  My hemoglobin (Hgb) was low too.  This is the part of the blood that carries oxygen.  The low hgb would explain why I was so tired all the time.  Something I was told was normal during all of my previous OB visits.  The next day I saw a Hematologist and they diagnosed me with Aplastic Anemia.  They did a bone marrow biopsy and that confirmed the diagnosis.

So what is Aplastic Anemia?  It is a form of bone marrow failure, not the kind of anemia where you just take some iron supplements.  From my understanding, what happened was that it was caused by an immune response to my baby.  Your bone marrow makes all of your blood cells.  Mine is failing to make some.  The only treatment that they could give me during pregnancy was blood transfusions.  I started with getting platelets once a week and red blood cells once a month.  That didn't last long though.  By the end I was getting red blood cells once a week and platelets twice a week.  The doctors were hoping that the condition would go away after pregnancy, but there was only a 33% chance of that happening.  If it was going to go away spontaneously, it would have happened by 3 months after the birth of my child.  This week marked 12 weeks since delivery, and the condition is still there. 

Our treatment plan is now this:  a bone marrow transplant.  The doctors think this is the best option for remission.  It has about a 70% success rate, but that number is the best case scenario.  My age and number of transfusions affect the success rate, but I am not sure to what extent.  I am lucky to have an identical match, my brother, Logan.  So we are now waiting to get transferred to get the transplant done, which we are going to do at the University of Kansas.