The number of mountains that we had conquered became hazy as we gasped for air, folded over, hands on our sweat-drenched shins. And before we could recover from our 30-second breaks, we were off again at Coach Butler’s whistle. The world was spinning, our legs were on fire with lactic acid build-up in our screaming muscles, and our lungs were about to burst forth from our heaving chests with hours of reps up and down the mountains of Red River Gorge. But we were a team, and we would suffer together until we collapsed with the final descent of the day. This was all part of the training. Coach Butler bellowed commands that only a coach could get away with, and we did as we were told. We knew this was the path to athletic greatness, so we sprinted half-mile mountain/ hills of Kentucky while many of our fellow students were enjoying the final week of their summer break.
When I signed up for collegiate cross-country, I knew that I was signing up for moments of torture, moments of pushing past my limits, and ultimately a lifestyle of discipline and long-suffering that only a partially-insane person would willingly submit to. While I hosted a mixed bag of motivations for college running, I had grand dreams of record-breaking race times, deep bonding with teammates, and overall betterment of myself through the continual practice of pushing past my limits and stretching my horizons. At the end of our first two weeks of training before the fall semester even began, however, we all questioned our sanity for willingly submitting ourselves to what seemed like cruel and exceptionally unusual punishment.
But we kept marching forward. We all housed dreams of greatness. We would suffer for our dreams. During the years of undergrad, some of us achieved that greatness, and some of us faltered and flailed until we recognized that we were unable to accomplish our grandiose dreams. One thing was sure, however: Together we huffed and puffed up those mountains in Red River Gorge, with our eyes on the prize, as well as the gallons of Gatorade that we would guzzle at the end of the day.
I have not run in four years, since before Elijah was born: Before they diagnosed me with POTS. I haven’t felt the promising and excruciating burn of the final mile of a ten-miler as I sprinted to the finish line since the Thanksgiving Turkey Trot of 2013 in 18-degree weather.
Last week, however, felt strangely reminiscent of cross county training. Though I haven’t trained as an athlete in years, I spent the past week panting, huffing, gasping, and pushing myself to the very end of my resources, not positive that would make it through to the other side.
Jordan and I flew to Vanderbilt Medical Center last week in search of further resources and allies to help me along my journey through hyperadrenergic POTS, Mast Cell Activation Disorder, and hEDS.
Full transparency: I did not want to go. Jordan pretty much had to tie me up and throw me onto the airplane to get me to Nashville. I was kicking and screaming the whole time. I am sick of doctors, and I feared that we would travel half-way across the country only to encounter invalidation and upper-class male doctors who would pedantically pat me on the head and tell me to try to exercise a bit more and eat a bit better. Honestly, I didn’t think that I could bear any more discouragement.
With the threat that I would have to sleep on the couch for the rest of my life if I refused to go to Vanderbilt, I conceded and resigned myself to the process of getting off of my medications, charting my symptoms, re-writing and rehearsing my history, collecting medical records, referrals, contacting insurance, and transferring lab work.
I tried to prepare myself emotionally for all possible scenarios. What if they tell me I need to get in shape? What if they tell me it’s all in my head? What if they tell me it’s not nearly as bad as it seems to be? What if I get into the appointment and can’t communicate because I am so nervous? What if I shut down because I sense that the doctors don’t care? What if they are arrogant, and I get sarcastic and caustic with them, thus sabotaging my whole treatment? (All of these scenarios have happened in the past).
Prayerfully, I tried to release all of the anxiety over the possible scenarios. Truly, I had no idea what would happen. Dr. Shibao, one of the main doctors at the Vanderbilt Autonomic Dysfunction Clinic, came with high recommendations. My doctors communicated with her long before my appointment and raved about her insight and expertise. I tried to grasp to these truths as I was being wheeled through the airport concourse into the Nashville open air, but they seemed to weasel their way out of my consciousness as though they were sand slipping through my fingers.
Thus, tormented by the emotional angst that occurs in the shadow of the medical trauma that I have encountered over the years, I worked desperately to silence the voices that crusaded adamantly against further testing and consultation. Vanderbilt requires that patients discontinue their medications three days prior to the Autonomic Function Test. The process of discontinuing medication abruptly was incredibly painful and exhausting for me. Because several of my medications suppress my sympathetic nervous system, my resting heart rate during my time of abstinence hovered around 120 beats per minute. As a result, I embraced insomnia in it’s fullness for the three nights leading up to the testing.
Because we were in Nashville, and Jordan and I both have connections there, we were able to hang out with several individuals during our time in the city. This would have been delightful if I hadn’t been shaking, racked with fever, constantly in a massive hot-flash, and trying to convince myself that chest pressure, tightness, and pain down my left arm is nothing to be too worried about. The doctors at Vanderbilt wouldn’t tell people to cold-turkey off their medications if it placed patients in a dangerous spot, right? Surely not! And so I soldered on. Whether or not I should have insisted on going to the ER, I’m not sure.
This is where my cross-country training and my running career proved to be a beneficial and empowering aspect of my history. I have never experienced the kind of agony, pain, and physical exhaustion that I experienced in the days leading up to my testing at Vanderbilt. I continually uttered breath-prayers:
God, please help me. Don’t let me die. Give me your peace. Calm my crazy heart. Don’t let me have a heart attack.
In the midst of the physical chaos of withdrawal and severe suffering, I continued to chant a variety of pep-talks:
Just one minute at a time. One more step, just one more step. Two more days. One more day. Twelve more hours. Final night. Five more hours. Home stretch. This is like the final mile of your marathon. You’ve got this. You’ve come this far.
Who knew that Autonomic Testing would be akin to break-neck speed training or hours of mountain-running for collegiate cross-country? Most runners know that your mind is your worst enemy when it comes to long-distance running. Even the most talented athletes can talk themselves out of an award-winning race time if they do not choose to address their negative self-talk. I never imagined that I would be using my internal dialogue skills that I learned in training while sitting in a wheelchair preparing for doctors’ appointments. I also believe that I may have accomplished something on par with a super-ultra-marathon this past week.
Finally, finally, finally, 10:45 AM arrived on Thursday morning. I discontinued my heart medications and my sympathetic suppressants 72 full hours ago, and I truly wasn’t sure if I was going to make it. The tech wheeled me back to the AFT room, and we began the testing (after he spent 20 minutes trying to warm up my Reynauds-stricken digits so that he could monitor my heart rate, SPO2, and blood pressure). Initially, the tech was not particularly chatty, and I was just trying to keep breathing.
I whispered between gasps, “It seems a bit dangerous to have patients cold-turkey their meds for testing.”
The tech responded nonchalantly , “yeah, your probably correct. But it’s necessary.”
That was one point I did not want to be correct on!
Jordan made a joke about how helpful it would be to have psychedelic designs on the ceiling for patients to enjoy while they were being tortured. I laughed internally, but I feared that laughing externally would disturb the precarious balance of my existence in the universe at the moment. I may have snort-chuckled, but that was as far as I was willing to go. Also, nothing seemed particularly humorous about our situation.
The tech placed a pulse oximeter on one finger and tiniest blood pressure monitor I have ever seen on another. Unfortunately, because I have Raynauds (really poor circulation in my hands and feet), he spent twenty minutes trying to warm up my hand in order to get it to register that I was alive! It is always comforting to find out that your stats are measuring on par with those of a corpse!
The AFT procedure involves a test where you blow into a tube, which triggers your vagus nerve, and after that, they “tilt you.” (Yep. That’s exactly what it sounds like.) The tech straps the patient to the bed, and then presses a button while the bed slowly tilts so that the patient is standing up, as if he or she were standing straight on the floor. At that point, they keep you upright up to 10 minutes, until you pass out, or until your heart-rate reaches a point that they deem dangerous. I lasted four minutes. The last thing that I remember saying was, ‘I feel like I’m running a marathon,” to which the tech responded: “Your heart is running more than a marathon.” And it was over.
After the testing, the tech became extra-friendly. I think that he felt sorry for me. He may have also been a little scared for my life. I certainly was.
Later, the doctor told me that my test results were some of the most severe that they had ever seen. They actually were unable to record my highest heart rate. The chart did not go high enough. Also, somewhere below 50/40, my blood pressure was no longer readable. Thank you, doc, for the validation. Seriously. Someone acknowledged that I am as sick as I feel. This acknowledgment of suffering can offer more comfort than any treatment plan can. I have spent the majority of my “sick years” being told, “We don’t really understand why you feel so rotten.” What a relief to be told that someone could objectively see on a scientific test result why I feel like I am dying a majority of the time. Honestly, if the doctors only validated me on this trip to Vanderbilt, it would have been well-worth it. I grew so weary everyone expressing their confusion over what exactly was wrong with me.
We picked up a few more tools at Vanderbilt. We will add a few treatments: first to my Mast Cell Disorder, and then also for my POTS. I picked up a new diagnosis that will qualify me for a monthly Xolair injection. This treatment has shown promise for patients with Mast Cell Disorders as well as Chronic Idiopathic Urticaria (a super fancy name for chronic hives). In addition, we will be adding Florinef in order to bolster my blood volume, which is incredibly low. Florinef can strip the body of potassium, which has historically been a bit of an issue for me, so we will be adding some hefty potassium supplements to my regimen. We will add salt sticks to my already salt-rich diet (think a salt-lick for a horse, and you get the idea). Jokingly, I told Jordan that we should just place a salt-lick beside our bed, and I should be golden! In addition, we hope to connect with a more POTS-saavy cardiologist in the Kansas City area. We will also continue testing for a more definitive Mast Cell diagnosis. We would ultimately like to rule out the possibility of Mastocytosis. As far as the hEDS Diagnosis, our goal is to stabilize my cardiac and dysautonomia symptoms before we begin any form of physical therapy.
My inclination to forge full-speed ahead surfaced with a vengeance, and I pressed Dr. Shibao about physical therapy, cardiac rehab, and exercises (there’s that crazy runner brain for you!). She lifted up her palms in a “stop” gesture and said, “hold on! This is going to be a slow process.”
Deep breath. Slow your roll, Megan.
I suppose that I’m okay with slow. I’m okay with gradual, as long as we are moving forward. We still have no cure. Dr. Shibao offered minimal explanation as to what mechanism is to blame for all of my systemic dysfunction. We continue to treat symptoms, because modern medicine still lacks a grasp on the “root cause” of this triad of illnesses.
We know, however, beyond a doubt, that this triad (POTS, MCAS, and hEDS) is mine, and it is currently my cross to bear. And we keep plowing forward, praying for healing, using the medical resources available (homeopathic and western), and seeking to live a faithful life in the midst of suffering.
My goal continues to be “To know Christ in the power of His resurrection and the fellowship of His sufferings, being conformed to Him…” (Philippians 3:10).
And then we just take the next step,
the next breath.
He’s got us.