One day I got up to go to work and I fell in the floor. I had blacked out. I had a 10 month old baby crying when I came to. My mom was beating on the front door. I managed to get to the door and open it. She took me to Vanderbilt hospital. I spent the next six months in the research center at Vanderbilt being poked and prodded. At first, they thought I was drug searching, but they quickly realized there was something wrong. With a blood pressure cuff on both arms, and a doctor on both sides; they would stand me up start listening and watch the blood pressure fall. When I stood my blood would pool in my legs and I would black out. Not something I could fake. Through testing they figured out that I was losing 15% of my blood volume every time I had an episode; somehow the water portion of my blood was evaporating, but they had no idea where it was going. The diagnosis came back as Mast Cell Cytosis, lovingly referred to as “Masto.” Masto is basically where your body releases mass amount of histamines and prostiglandins. The treatment was
- aspirin– to counteract the prostiglandin release
- salt pills– to help retain the water portion of my blood and keep me from blacking out.
- antihistamines– to counteract the histamine release
- anti-malarial -drug called Plaquenil to darken the pigment of my skin to keep me from being sensitive to sunlight
The treatment seemed simple, but it had some bad side effects. Taking 13 aspirins a day; they told me not to shave because I could bleed to death; don’t walk around because if I bumped into the coffee table it could cause a blood clot. I also had to go to the hospital and have blood levels drawn 3 times a week to make sure I wasn’t developing aspirin induced hepatitis. Aspirin is hard on the stomach, so there were drugs to counteract that too. I did this for almost a year and I decided this was no way to live. I was 20 years old and had a baby to take care of; I was not going to live in a bubble. I stopped all treatment. I learned to move immediately when I stood up to force my blood to pump. Ten years later they ran another test that said I did not have Masto. I don’t know whether I did or I didn’t. Maybe, it was all they could come up with at the time. I have learned to listen to my own body and give it what it needs. Medically sometimes, it really is just their best guess as to what is wrong. It is not an exact science. Asking a lot of questions and weighing the options of treatment vs. no treatment has to be your decision. For me it was a good choice to stop treatment. I had determined that live or die; I was not going to live like that.