Growing Deeper Roots: My Story of Invisible Illness

Well, we finally got into the Johns Hopkins' Pituitary Center. We made the appointment 6 weeks ago, that's how long the waiting period was. After 6 weeks, a blood test, a 3 hour appointment, and one of the world's best endocrinologists, we haven't made any progress. Dr. Salvatori diagnosed me with a prolactinoma, a pituitary adenoma that causes an imbalance in the prolactin levels. He did not see any issue with my cortisol levels or my adrenal gland. Normally, he world advise hormone treatment for this mass but the treatment has one concerning side effect...dizziness. Due to my already oppressing syncope, we won't go forward with treatment for Voldemort. Instead, I will have regular hormone level checks and MRIs. The good news? Tumors that behave this way, interacting with the pituitary, are very rarely malignant. The bad news? We have no more leads for treatment of my syncope. But hey, at least it's easier to catch yourself when you fall if you are...

Today I had a follow-up visit with my Frederick cardiologist and the electrophysiologist that serves their office. He reviewed the results of my last Holter monitor and we updated him with all the new information we had about the pituitary and POTS. After reviewing my Holter monitor and doing an orthostatic test in the office, Dr. Sinha confidently disagreed with my POTS diagnosis. We showed him the work up from the Tilt table test at Johns Hopkins and he told us that it was not performed for a traditional POTS test. Great. His opinion? Neurocardiogenic syncope, the same diagnosis I was given in March. However, unlike the 2 cardiologists in Chestertown who wanted to load me up with Midodrine and ignore the possibility of any other cause, Dr. Sinha wants to look further into the cause of this syncope. With a diagnosis like neurocardiogenic syncope you have an explanation of the physics behind the symptoms but not necessarily a cause for the mechanism causing this abnormal reactio...

              Long before my life was turned upside down-or rather, sideways-from my illness, I knew that I wanted to go into public policy or law to focus on health care reform. I've been interested in the ethical and public interest components of medicine since taking a freshman seminar called Ethics of Globalized Medicine. I suppose, since I signed up for the course eagerly, my interest may have started even before then.               Since then, I have taken several other classes that delved into the inner workings of health care and medical law. While we often debated the legitimacy and ideology surrounding the Affordable Care Act, more often than not, our discussions surrounded the shortcomings of the American Health care system that no one could deny: our wasteful spending, the gaps in coverage, the profit margins within the industries. As much as I have learned in the classroom about these issues, I hav...

I'm on a roller coaster. And for someone who faints at the slightest increase of altitude, this is not good.  BUT! I have an update.  After many tests and a hormone treatment/analysis my team here at Johns Hopkins Bayview Medical Center has decided that removing the tumor is not our best option. From here they have diagnosed me with POTS.  POTS is a type of dysautonomia that is characterized by orthostatic intolerance and excessive tachycardia. POTS stands for Postural Orthostatic Tachycardia Syndrome and affects over 1 million Americans. While there is no definitive known cause for POTS, many believe that viral infections can cause this malfunction of the automatic nervous system. One of the leading viral infections to cause POTS? Lyme disease. (I think I've seen this tree before) While the name and credit of POTS is relatively new (1993), the syndrome has been around for a while under many other names.  Treatment of POTS is difficult because it is o...

Remember when I said that I was excited for the tilt table test? Remember, I thought it would be fun? I was wrong. I was very very wrong. So they strapped me to a table and let me lay flat. Then they recorded my BP and pulse. Then they tilted me up 10 degrees at a time while measuring these vitals. The goal? To induce my symptoms while measuring my vitals. Induced, they were. The head rushes, nausea, vertigo, disorientation, dizziness, blurred vision...all of it at once, combined with the anxiety of a potential syncope episode and the fact that I was strapped to a table, was the complete opposite of fun. In addition, my BP dropped from 117/65 to 89/55 while my pulse when from 84 bpm to 135 bpm...not a normal reaction to sitting up. I'm keeping the new med students and interns interested as we await more news. On the upside, I have been moved to a new diet at the hospital and now have twice the amount of options!