hi, my name is jeannie lee.

& this is my story

For as long as I can remember I’ve always had a difficult time breathing. As a child I participated in sports, and felt that I needed to train harder…or that is was just hot. These were some of the reasons I convinced myself that I was short of breath. I continued to be an avid participant in athletics, however there would be times when I would vomit, and pass out, after pushing myself too hard.  My parents would take me to the doctor regularly, and even rush me to hospital. The only diagnosis would be pleurisy.  It was not until I was pregnant with my first child that a doctor diagnosed me with asthma…or at least, that was the thought. Over the years, numerous doctors tried, unsuccessfully, to treat my “asthma”, but nothing seemed to work. My lungs were stressed, but structurally healthy. My pulmonologist was vexed, but she was determined to help me in any way possible.

In 2013 my life forever changed. I called my doctor and explained that I felt like my throat was collapsing, and that I could not get any air. She asked me to go straight to the emergency room where she would meet me. My oxygen saturation levels were in the 50% range, and I was beginning to lose consciousness. I was administered oxygen immediately, and the whirlwind began. To everyone’s surprise I was in acute respiratory distress (failure) without an apparent reason why.  It took the medical professionals two weeks to stabilize me. But everything that they administered to me seemed to make things worse. Steroids increased my heart rate and blood pressure, and blood pressure medication placed me into a hypotensive crisis.  The doctors eventually came to the conclusion that sending me home on six liters of oxygen was the best course of action until they could figure things out. That treatment plan did not settle well with me, and I refused to be discharged. I was 36 years old at the time, and woke up one day needing life saving measures.  Administering oxygen, as the only viable treatment option, was not good enough in my opinion.  I begged them to do a full body scan, starting with my head.  Little did I know that request would save, and change, my life. The very first scan revealed that I had bilateral tumors on my carotid arteries, on both left and right side of my head and neck. Additionally, there were bilateral tumors in both jugular bulbs. At the time I was told do not worry, and that everything will be fine.  However, this period of time actually proved to be the beginning of my descent into the world of the unknown. My neurologist labeled me an “Albino Zebra”, meaning that I was rare.  He took me by the hand and said, “Don’t worry we will find you some help!”  He explained that the hospital was not equipped to handle my “glomus tumors”. I was transferred to another hospital where they rushed into surgery, only to discover that my “glomus tumors” were paragangliomas.  I suffered two strokes while in surgery, and had to be resuscitated. It was not until after the unsuccessful surgery that I learned that I had paragangliomas. The surgeon initially focused on the left carotid tumor, because it was smaller than the right and did not seem to be attached to any cranial nerves. Unfortunately, the tumor decided to fight back and they learned that my tumors were scleroid in texture.

In the end, in addition to the near death experiences mentioned above, the surgery resulted in the left tumor not being fully removed, the right one still fully present. As a direct result of surgery I suffered an occluded left external carotid artery, a partial paralysis of the left side of my body and vocal cord, a severed vagus nerve, and Horner’s syndrome. Subsequently, I endured 25 sessions of radiation, in attempt to combat the tumors, and tried to return to a normal life afterwards. However, as a direct result of radiation, I developed a diminished sense of taste, a loss of appetite that resulted in difficulty maintaining weight, disrupted sleep pattern, and debilitating migraines. Eventually, I opted for surgical intervention to restore function in the paralyzed vocal cord, and was subjected to a series of different medications and procedures to deal with the migraines.

In 2015, I was hospitalized for breathing issues, and the physicians eventually determined that I developed a 3.5 cm blood clot in my right atrial chamber. The clot was treated with blood thinners, which I am still on. A subsequent genetic study revealed that the root cause of the blood clot was Factor V Leiden, which is an extremely rare genetic condition that leaves me susceptible to blood clotting. Additionally, it was further revealed that I have SDHD malignant paragangliomas, and more tumors were expected. Currently, I have three active tumors, all of which are inoperable. I also have a right temporal bone paraganglioma, a right carotid body tumor at the base of my skull that is attached to both the external and internal carotid arteries, and a thoracic tumor wedged between the aortic and pulmonary arteries. I continue to experience frequent, unexplained cycles of hypoxia.

The fallout from all of this is that I am now unable to work. I have been under the care of numerous specialists from several different healthcare facilities, and none of them have been able to provide a suitable diagnosis, or treatment, for my ailment. Recently, my case has been accepted by the NIH, and they are evaluating my condition and treatment options. I have learned that I must be knowledgeable about my condition so that I can be an advocate for myself. Doctors don’t always have the answers, but I know my body and what I’m experiencing better than anyone else. This is one of the reasons why I’m still here and receiving the best possible care I can.