Submitted by Gina
My Story
Three years ago my life was picture perfect. I was married to the man of my dreams and had a baby on the way.
On the night of my husband's 39th birthday, at 32 weeks pregnant, I began coughing up 1/4 cups of blood for no apparent reason. I was told to go directly to the emergency room where a battery of tests revealed a softball-sized calcified mass under my heart that had slowly sealed off all blood flow to my right lung and had begun closing off the artery that controls blood flow to/from the head, the superior vena cava.
I was transferred to University of Connecticut Health Center where I was to deliver my son, Zachary, and figure everything else out later.
In the wee hours of the next morning, they told me I had histoplasmosis, a very common fungus found in soil of the Midwest and some eastern states. Ninety percent of the population has inhaled it, resulting in nothing more than flu-like symptoms. However, in approximately one of every 100,000 people, the body reacts to the fungus/yeast by trying to "wall it off", creating calcification in and around vital vessels and airways of the heart and lungs. That is what had happened to me.
I delivered my son eight weeks prematurely. Zachary and I both stayed at the hospital for several weeks while he grew and I was tested and diagnosed with a rare lung disease called Fibrosing Mediastinitis (FM).
FM is so rare that there are only 300-400 diagnosed cases currently in the United States. Generally speaking, people don't find out that they have FM until it has caused irreparable damage to vital airways and/or blood vessels. FM is inoperable and causes many life threatening complications, including repeated stent placements and angioplasty procedures, which are potentially life threatening as well. FM is diagnosed in people that are in their late 20s to mid 40s. It is hard to diagnose due to the age of the otherwise healthy patients. Doctors are not aware of FM and therefore do not know they need to test for it. The only diagnostic procedure that indicates FM's presence is a CT or MRI exam.
Sadly there are no known cures or treatment options for FM and due to lack of awareness thousands are going undiagnosed. Research needs to be done on this and on many other lung diseases so that my family and thousands of others can have answers to our questions and not just hear the doctors say, “I'm sorry, we just don't know.”
I have been working hard to raise awareness of FM and have found myself in the "Pageant Arena." Always a tomboy, this is a new world to me. However, it does provide a title and a platform on which to speak. Currently, I am the reigning "Ms. New England American Dream 2007" and am working feverishly to use my title to my advantage and raise as much awareness as is possible.
I refuse to let this life-threatening disease take its victims away from their family and friends!
