Nashville and Vanderbilt

Last week was quite the adventure. Having waited now for months to be notified of an appointment date at the Autonomic Dysfunction Clinic at Vanderbilt, imagine my shock when they called me the Friday before last to remind me of my upcoming appointment! Oh yes, I had an appointment at the much vaunted Vanderbilt on the following THURSDAY. So not only did I have to stop my cardiac medications (and clonidine how I missed you) but I also had to stop my IV fluids, all while trying to find a way to get to Nashville from Louisville. Needless to say, I was a little stressed, and without a way to limit the sympathetic outflow, I was a wreck. The upside was I had gobs of energy, the down side was my HR and BP were through the roof. I didn't sleep for days. But, my good friend Robin agreed to take me to my appointment, and girl vacation was on! Two crazy ladies and a dog hit the road and made it to Nashville with only a little misdirection and much much laughter.

The next day was the every entertaining Autonomic Functions Testing (AFT). For people with dysautonomia it is a form of torture. They test the vagal tone by assessing the reaction to extended Valsalva manuevers, and it almost always guarantees a solid black out. They assess for changes in heart rate and BP with deep breathing, in teens this might be called pulsus paridoxus, but it is not normal in adults. They cap it off with a set of orthostatic vital signs. The good news is that they have stopped doing the cold pressor test (in which they submerged the hand in ice water for one minute). My HR at rest was 116, and standing was around 145. Not too bad. BP flat was 136/84 and standing was 134/104, then bottomed out and was unattainable. No big shock there.

So the end result is that I still have POTS, I still have an excessive adrenergic response, and I really need my IV fluids every day. Talked about some medication changes to stop the wanton high BP, and about the need to avoid any stress. I sort of laughed, because as a graduate student, I am not sure how they expect that to happen! Every one LOVED the dog. Miss Lyla was a big hit with the staff at Vanderbilt! I need to get her a patch that says "no petting, and yes that means you". :)

Overall it was a worthy venture into the land of specialty care. Robin and I had a lot of fun and Lyla was a great addition to the mix. It just makes me grateful to be close enough to get this kind of care, and to have great friends who will get me there!