Vanderbilt Dysautonomia Clinic

When I got my POTS diagnosis in July, I applied to the Vanderbilt Dysautonomia Clinic to try to find some answers. Since Dysautonomia is a field of medicine that is underfunded, under-researched, and fairly new as a diagnosis, there are not a lot of specialists, research clinics, or POTS-literate physicians. The clinics and specialists that do exists are swamped with patients and the wait-list is months long. I applied in July and my appointment was March 10th.

My incredibly supportive parents drove me out to Nashville last week for my appointment at Vanderbilt Dysautonomia Clinic with Dr. Robertson. We spent the night with my aunt and uncle in Franklin and then arrived at the clinic Thursday morning at 7:30.

First I had a blood volume test. This consisted of using an IV line to take blood samples, administer a radioactive substance into my line, and then take more blood samples in 6 minute intervals. The purpose of this was to measure how the radioactive substance was diluted in my veins to help measure my volume. I was fairly worked up about this test because I hate getting IVs placed. I know, at this point I should be used to it but I'm not. When I was at Johns Hopkins, the nurses consistently had difficulty placing IV lines and I would suffer through missed needles, rolled veins, and frustrated (and often rude) nurses. I always warn the nurses that I am a "hard stick," meaning I have small, hidden veins that tend to move as soon as you find them. (A year ago, I wouldn't have known this about myself...sigh)

The technician didn't have any difficulty finding a good vein though and the IV was placed with ease. I didn't even cry. Then, we spent an hour taking samples of blood every 6 minutes. I had to drink an iodine solution to protect my thyroid from the radiation and I was so nervous the whole time that my port would stop working and I'd have to get a new IV placed but the test went smoothly. In fact, I didn't even fully faint during the blood testing. I had to drink the iodine solution 2 times for the next three days. It tasted like a combination of pool water and salty pee. 

Then we had a few hours to kill before my Autonomic Function Test. Since I have put my law/grad school search on hold for my health, I am still researching and investigating potential schools so we decided to tour the Vanderbilt Law campus. It was a fairly nice day out and the blossoms on the trees were blooming so the campus looked beautiful from my wheelchair. My dad had fun pushing me around in the chair like a madman and scaring my mother every time he let me free fall down a ramp.

 

Then I had the Autonomic Function Test (AFT) at 12:30 p.m. They strapped me to a table while hooked up to several heart monitors, and EKG, and a blood pressure cuff, and had me rest for 10 minutes. Then I did a breathing exercise of inhaling through my nose for 5 seconds and exhaling out of my mouth for 5 seconds. Again, my HR and BP were monitored. Then, I had to blow into a tube for 15 seconds to simulate blowing up a balloon, then my HR and BP were monitored. All of this occurred while I was laying on the table and, although I felt winded, I was not symptomatic. 

Finally, they raised the table to 75 degrees so I was practically standing straight up, but was strapped to the table. The tech said that this was the easiest part, I just had to stand for 10 minutes, and then they would take my BP and HR. This is when I started to feel symptomatic. Within the first 4 minutes I became very nauseous. I told the technician this and she started a conversation with me to distract me as the time passed. 

Then my vision started to blur and I could feel my face flushing. I warned her that I felt really ill and might get sick. As she was retrieving a waste-bin, I got dizzier and dizzier, I remember watching her try to hand me the trashcan and not being able to grasp it. Then the BP cuff started to pump, trying to get a reading of my BP. I could hear the beeping of the machine as it failed to get a reading and the tech said, "That's strange, it can't get a reading of your vitals." I tried to tell her that I was losing consciousness and that the machine probably couldn't read my BP because it was dropping but I couldn't get words out. My last thoughts were "Fight it, Tori. Stay conscious. You're almost done. Fight it." 

Next thing I knew, I was laying on table as it was flat and the technician and a nurse were wiping my head and one was saying "Are you with me, Victoria? Victoria? Can you hear me?" I could, but I couldn't answer. This happens a lot when I am fainting or coming out of a faint. It's very frustrating and dehumanizing to not be able to communicate when you want to. Eventually, I came to completely and they gave me some water and crackers as I recuperated. For some reason, they were both surprised that I fainted, but for me it was just another Thursday. However, this was one of the few times I have had a BP cuff on when I had an episode and it apparently got a reading right before I went out. 43/28. Yup. Systolic: 43 Diastolic: 28. Whoops, a bit hypotensive today, are we?

So I got something to eat and tried to drink my weight in water and Gatorade while waiting for the final consultation. At 2:30, we met with Dr. David Robertson, MD. for 2 hours. We went over the application I submitted and all my medical history and symptoms (yeah, that takes about 2 hours). He told us about the research he is doing with POTS and some of the trials he has going on in the clinic. He seemed really interested in my case as a potential candidate for a trial but told us that he would have to review my tests and medical history more before taking me on as a patient or giving me a treatment plan. 

I've seen a lot of doctors in the last 18 months. I have met the "I'm too busy for your questions" doctor and the "I decided my diagnosis before I met you" doctor and the "I don't believe your symptoms" doctor and the "I only have 5-minutes with you, but you can talk to my intern" doctor and the "I spent more time studying than interacting with people my whole life so I don't know how to talk to my patients" doctor, but this was the first doctor who I felt was listening, caring, and seeing me as a patient, person, 21-year old, future politician, youngest daughter, scared but determined POTSie. This was the "I believe you" doctor and the "I want to help you" doctor. He had a strange way of answering question in a round-about way but he took his time to get to know me and my parents as patients and people. He asked me how I was feeling, and I started spewing off my symptoms until he reworded his question. He wanted to know how I was feeling, how I was doing, how I was coping. He told me he was interested in my case because it was simultaneously characteristic of POTS and raising new questions. He told us that my AFT was indicative of a severe case of POTS but my blood volume tests were not what he would've expected to see. 

Then, he praised me for my determination to get healthy and my strength in the face of adversity. I've heard these praises before and usually I have to hold my tongue and stop myself from sarcastically retorting in bitterness. I often have the urge to tell people that I'm not brave or strong or any of that, I'm just option-less. If I could choose being a coward over being sick, I would. It isn't a matter of facing the adversity with a positive outlook or staying hopeful, it's a matter of what the hell else am I suppose to do? I'm not being brave, I just can't stop this train or get off of it so I'm sitting in fetal position in the back of the car as the train chugs along. Those are the cards I was dealt. I hate hearing those stupid platitudes about "knowing how strong you are when strong is the only thing you can be" or "God gives his hardest battles to his strongest warriors." No offense to the authors of these cliches, but screw you. These are my usual thoughts when I hear about how strong I am. 

Yet, for some reason, Dr. Robertson's remarks made me feel differently. After praising my strength he immediately said, "I just want you to focus on this: I do not think you will be having these problems 5 years from now." For the first time since I got sick, someone-and a doctor, nonetheless-was giving me something more than hope and praise to hold onto. My mom and I both said "Really?" in unison in these desperate voices and I could feel my eyes swell up. He explained some of his findings in his research and how he believes that he is close to finding a treatment plan and possibly a cure for POTS and he thinks I will be fully managing, or cured of, my POTS within a few years. 

This might not seem very hopeful to a patient with the flu or a broken bone: You'll probably be better in 5 years. But I've spent the last year hearing that I had a chronic, incurable, progressive illness that was highly misunderstood and had few treatment plans. I have tried every FDA approved medication for POTS while trying to use physical therapy, diet, meditation, yoga, compression socks, and anything else I could find to minimize my symptoms with very little success. I was facing a life sentence of uncertainty. To hear that maybe, just maybe, I could get my life back, was indescribable. While we left the office without any definitive answers, we left with more hope than I have had in a long time. We are still waiting on a treatment plan but I've stopped picturing myself fainting in the White House, so I guess that is promising.