Thursday, October 3, 2013

A Summary Of Things

Aplastic Anemia was foreign to me.  I have not even heard of it until it landed on my doorstep.

2006: The Beginning

It was a rainy day. I just started working right after college and I was happy to use my medical insurance and get my annual check-up. After blood work, I drove home hoping not to hear from my doctor. After all, no news is good news; I was wrong. About two hours after I got home, doctor's office called informing me that my platelets are low and I need to see a Hematologist.

That same week, I went to see Dr. M. She performed a bone marrow biopsy; I cried. She gave me a thorough examination then sent me for a CAT scan and a Nuclear Med Scan. She said she wanted to be thorough so that we can find out what's causing my low platelet count.  I was initially diagnosed with idiopathic thrombocytopenic purpura (ITP). It meant I have low platelets with no known cause.

2006-2008: Sit and Wait

This years I'd call the "sit and wait." There wasn't much that we could do but watch my platelets. At that time, the National Institute of Health (NIH) said that my counts are still stable and I could not qualify for any of their clinical trials.

2009-2011: Danazol Protocol and Genetic Mutation

My platelet counts were now hovering in the 20s. My Hematologist said, "It's time."

Time for what?

I was back at NIH, and the doctors there enrolled me in the Danazol Protocol. The main reason why I was chosen for this protocol is because they suspect that my short telomeres (tails of my chromoromes) are the ones causing my low platelet count.  Apparently, my telomeres are abnormally shorter than what they should be.

Oh my God, I am a mutant!

The Danazol worked for sometime. The highest platelet count I got was 40, then it was downhill from there.

2012: Hemangioma Later

I developed a Hemangioma on my left leg.

Doctors weren't sure, but they suspected that I have a hemangioma already even before I started taking Danazol.  Suspicion was that, the Danazol encouraged the growth of my hemangioma. Since my platelet count was not improving anymore, they thought the hemangioma was causing my low count.  I had to be taken off the Danazol.  My hemangioma decreased in size almost suddenly.

Goodbye Danazol!

2013: Transfusions

This year, my counts are the lowest and that's including my red blood cells. I am now needing weekly platelet transfusions and every three weeks transfusion for red blood cells. It's a rough time, and this is also the time my doctors recommended I should push through with a bone marrow transplant (BMT).

I cried. I cried so much that it hurts. Where do I go from here?

September 25, 2013

I decided to go through a bone marrow transplant. The search for a donor commenced.


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