On August 16th, 2018 I met with a Geneticist, Dr. Tinkle, at Peyton Manning’s Children’s Hospital. I’ll admit, the questions he asked and the tone in which he asked them gave both my dad and me the vibe that he felt like I was a hypochondriac… but then he did a very thorough exam.
He had me stand for the duration of his short little exam because he was looking to see if blood would pool in my feet. Unfortunately, it did.
While we were discussing my medical history, we had talked about how when I stand my heart rate increases to at least 115 if not higher and if I continue to stand it continues to climb and if I walk it climbs even higher. I told him that I had seen a cardiologist who had me wear a Holter Monitor for a week and that we had caught this and more on the Holter monitor but that because I presented with a very common arrhythmia (pre atria contractions) he felt that my heart was just doing what my body and central nervous system was instructing it to do and therefore there was nothing wrong.
He agreed that my heart is in fact doing what my central nervous system is telling it to do… but unfortunately my central nervous system is instructing it incorrectly. This is a form of dysautonomia known as Postural Orthostatic Tachycardia Syndrome (POTS). When you change positions (and sometimes for absolutely no reason) your blood pressure bottoms out and your blood pools in the bottom half of your body and in an attempt to get the blood back up to the top part of your body your heart speeds up really fast and works really hard… but when it can’t get the job done… it makes you pass out so that your body will collapse to the floor where your feet and legs will be parallel with your heart and brain and the blood can more easily flow back to the top half of your body.
I have presented with symptoms of this since I first got sick in 2015, but it has taken until now to get a diagnosis… and without a diagnosis you can’t get proper treatment.
Unfortunately, POTS is another incurable illness, but we can work to treat it by increasing my salt intake to 6-8 grams increase my blood pressure, increase my daily fluid intake to 120 ounces, be conscious of my boundaries and limitations… especially on hot days because I can’t sweat, etc.
I am also being referred to a world-renowned cardiologist in Toledo, Ohio. He isn’t accepting new patients but because of the referring doctor, he has added me to his year long wait list just to schedule an appointment.
Yes, you read that right… my appointment isn’t a year out… I am on a wait list to receive to schedule my appointment in a year.
Until then Dr. Tinkle will manage my care.