Thanks for visiting. I'm using this website to keep friends and family updated as I am treated and undergo a bone marrow transplant.
This all started back in the fall of 2014, when I suddenly developed polyarthritis in all of my joints. Some of my high school friends might remember that I could not perform simple tasks like unscrewing the cap on a water bottle, and on the worst days I couldn't get out of bed. After several visits with various specialists, we found a rheumatologist, Dr. Dedeoglu. She has proven to be the best, most caring and dedicated doctors that I have met. She is the one who, after several years of countless blood tests, bone marrow biopsies, and false diagnoses, found the GATA-2 mutation.
This past spring, things took a turn for the worse (and prompted Dr. Dedeoglu to conduct the genetic testing) when I caught mononucleosis. Because of my compromised immune system, I was unable to fight the infection as most people would. I was feverish and nauseated, unable to keep down any food, water, or medicine. I was then hospitalized and lived off of an IV. At the hospital, the doctors then discovered that I also had cholecystitis--inflammation of my gallbladder. They immediately removed my gallbladder laparoscopically, which was the least invasive method possible. Despite this, the procedure took a huge toll on my body, and I ended up being admitted back to the hospital four times in the next three weeks.
After this chaotic time in and out of the hospital, I was informed of my diagnosis, and I had to make a decision: get a stem-cell bone marrow transplant now, and miss a year of school to recover, or wait until I graduate and then have the transplant. I elected to get the transplant done now, because it has become apparent to me that I cannot function at the level I need to in order to perform well academically and have a social life. I also do not want to risk becoming leukemic, which could happen in ten years or in a month, as my doctor, Dr. Antin, put it.
I am now waiting to hear from my team about when I will get the transplant and what the next steps are, and will make updates here as often as I can.