My Vanderbilt Visit

My Vanderbilt Visit

vanderbilt

What do you do when you have all of your hopes riding on one person? I guess that’s really not fair, is it? To put your dependence on an imperfect human being who is just trying to do their job. But we do it every day. Some times more than others.

Last week I went to Nashville, Tennessee. It was great. I loved it. I was a total tourist. I saw every country music-related site in existence. I had the best time. But I did not go there to sight-see, or to take a picture with Taylor Swift’s exhibit at the Country Music Hall of Fame. I never would have gone to Nashville were it not for the Autonomic Dysfunction Center at the Vanderbilt University Medical Center.

As I have mentioned before, I have a chronic illness known as POTS (short for Postural Orthostatic Tachycardia Syndrome). POTS is a form of dysautonomia (or autonomic dysfunction). Dysautonomia refers to a group of diseases that cause your autonomic nervous system to function improperly. Your autonomic nervous system is responsible for all of the bodily functions you don’t have to think about, like breathing and your heart beating. It causes symptoms that include an increase in heart rate (especially upon standing), severe fatigue, shortness of breath, chest pain, confusion (or, as many refer to it, “brain fog”), dizziness, nausea, and migraines. This is not the only chronic illness I have, but it is by far the most intense and pervasive. These past few years since I first began dealing with POTS have been life-changing.

My dear cardiologist, who is absolutely amazing and by far the most knowledgeable physician on POTS in the area, has tried everything she can to help me. She has put me on every treatment, from prescription medicine to exercise regimens to compression hose to IV infusions. She recently told me that I have reached the maximum treatment level and that there is really nothing additional she can do for me. She suggested I give Vanderbilt a try, as several of her POTS patients have had success there and it is really the best place to go for any sort of autonomic issue in the southeast.

I was not excited to go to Vanderbilt, even though it meant a trip to Nashville and the possibility of more answers and treatment options. Perhaps I was experiencing a bit of foreshadowing.

Before my actual appointment with one of the Vanderbilt physicians, I would be doing testing to confirm my diagnosis and make sure that there was nothing else going on. For this testing to be accurate, I had to be off of most of my medications for three days prior to the appointment. I also had to skip an IV infusion. I was, to be quite honest, terrified of what this might bring, but I had no idea. For three days I had the full experience of POTS – untreated and unbridled. It was miserable. I could not stand for more than a few minutes without feeling extremely dizzy. I experienced intense nausea and fatigue. I was a mess. But I was a hopeful mess.

It became pretty clear after arriving at Vanderbilt that this would be an interesting visit. After signing in and taking a seat in the waiting room, we waited. And waited. Then I was registered at one of the desks in the waiting room. And then we waited some more. Finally, a nurse came to get me for my testing. Before the testing began, I was hooked up to two blood pressure monitors, an oxygen monitor, and an EKG (heart monitor) machine. After being told to relax (what great advice), I underwent the first test. My heart rate and blood pressure were monitored while I breathed in deeply for five seconds, then out for five seconds, over the course of one minute. This probably doesn’t sound like much, but for someone who lives with dizziness and shortness of breath on a daily basis, it was definitely uncomfortable. (Who knew a minute could last for so long?)

The next stage of testing, known as the Valsalva, consisted of me blowing continuously into a syringe for around 20 seconds. (Yes, this is just as bizarre as it sounds.) I was dreading this part of the testing. I have done similar, less intensive, testing at my allergist’s office multiple times before – and I usually fail. The nurse had told me that I would only do the Valsalva twice, unless my first two attempts were, for lack of a better term, not good enough. I was not surprised when she asked me to repeat the test a third time.

I was actually somewhat excited for the third and final portion of my testing – the tilt table. The tilt table is a bit infamous amongst dysautonomia patients, but its effects can be easily mimicked without using an actual tilt table. This was not this first time I had undergone this type of test, but it was the first time I got to do it with an actual tilt table. I was strapped onto a table-bed hybrid and then titled into the upright position. This is about ten times more disconcerting than it sounds. I have heard horror stories about tilt tables. Even if you survive being tilted upward, many patients cannot remain that way for the required length of time. I was to do everything within my power to remain upright (while still strapped to the table, just in case I passed out) for ten minutes. Perhaps not lasting the full ten minutes would have helped my case and showed how sick I really am. But I was determined. I was going to get through those ten minutes if it killed me. And I did (no death involved).

At the conclusion of my testing, I was sent back to the waiting room, where my parents and I waited for a while before I was taken back to an examination room. Before seeing the doctor, we saw a fellow (a step up from a medical resident – basically a medical student on the cusp of graduation) who went through my history with me. He questioned me very thoroughly about my past history of passing out to make sure there was nothing else going awry neurologically. He then performed my physical examination, which I have experienced so many times in my neurologist’s office that I could probably do it without instruction by now – walk in a straight line, touch my finger and then my nose, hold my arms out and don’t let him push them down. There were a few interesting new inclusions, such as having to remember the phrase “bad baby blue” over a period of several minutes and being poked with a safety pin to test my nerves. The fellow also informed us that my Valsalva testing was abnormal and that my heart rate increased by nearly fifty points during my tilt table testing (a POTS diagnosis typically requires an increase of thirty).

At this point, the brunt of my appointment was over. All that was left was the doctor coming in and confirming what I somehow knew all along: there is nothing else she can do. My local doctors are doing a fantastic job treating me. Maybe someday my POTS will get better, and maybe it won’t. She did have some interesting thoughts regarding whether POTS could potentially be an autoimmune disease (or at least related to the autoimmune system). But there were no answers. No magic pills. Just a confirmation of my diagnosis and that my treatment plan is the best that there is.

So I smiled at the doctor and the fellow. I thanked them. I said goodbye. And I walked down the hallway in tears. I drove almost six hours to find nothing new. Why did I even try?

Perhaps the better question could be why did I put all of my faith in this single individual? Why did I let my hope rest in an imperfect human? Why did I trust that my deepest and most desperately searched for answers could come from anyone other than my Heavenly Father?

“Trust in the Lord with all thine heart; and lean not unto thine own understanding.”

– Proverbs 3:5

Throughout the trials I have experienced from my health in my life, I have often felt that my answer is that there is not one. That He wants me here, in the midst of this pain, for a reason. I do not understand that reason, and perhaps I never will until I see Him again. But that is okay. As long as I trust Him and not my imperfect, hopelessly human self, I will be fine.

I cannot count the tender mercies He has given me. I see them every day. And I saw them after what I felt was a failed appointment. In that moment of bitter disappointment, Heavenly Father sent me four angels in the form of two sweet older couples waiting to check out along with us. All of them wished me well and told me I was too young to be sick. All of them put a smile on a face that had just seconds before felt tears.

He knows what we need, when we need it.

“And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me…for when I am weak, then am I strong”

– 2 Corinthians 12:9-10

No, I did not get the answer I wanted (or really any answer for that matter). But I heard a specialist tell me that I am not crazy. That there are a lot of people experiencing the exact same thing that I am, even if I don’t see them. Even if I feel alone. I gained new confidence in my team of doctors treating me locally. And I learned to trust just a little bit more.

“When fear comes knocking, there You’ll be my guard / When day breeds trouble, there You’ll hold my heart / Come storm or battle, God I know Your peace will meet me there”

– “Prince of Peace” by Hillsong United

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