Updates!

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 often a spectrum of several symptoms. Everything from severe syncope, GI symptoms, anxiety, heat sensitivity, fatigue, headaches, brain fog, and the list goes on. But the main indictor of POTS is excessive tachycardia. 

My tachycardia is pretty much textbook. My resting heart rate is around 80 BPM, but as soon as I stand my heart rate jumps to 140-160 BPM while my blood pressure drops to 90/60 and my oxygen levels go under 85%. This is when I faint. 

So where do we go now? My JH team wants to get me stable and able to stand on my own for at least a minute. They would also like to see me take a few steps on my own. 6 months ago, I could run 2 minutes without much difficulty. I could take the stairs without concern. I could live on my own. Today, I'm a little overwhelmed by the trip to the beside commode. I have been bed ridden for a week and wheelchair bound for two weeks. I haven't walked on my own since May. 

Our plan is to get me to these goals with tilt table therapy (aka, torturing Tori), physical therapy, and fluid infusion. Once I reach these goals I will be transferred to an acute physical therapy and rehab center until I can regain my mobility and general health. This will hopefully be a unit on the Bayview or main campus of JH. I did my first round of PT and fluid infusion today and it went fairly well. I stood for 2 minutes and 15 seconds but I also fainted twice. 

I have a long road ahead. On one hand, I won't be having brain surgery. On the other hand, I will be living in a hospital/in patient rehab center for the rest of my summer and learning how to walk again. I have a mountain in front of me. I just need to pick a route, grab a walking stick, and start climbing one step at a time.