I’ve been putting off writing this for a while, because i bear bad news. Or rather, no news at all.
In my last post, i explained that i had an appointment with a pediatric cardiologist on July 22nd. We really though he would help me and bring me some answers…but he really didn’t, unfortunately. He doesnt really know much about the autonomic nervous system, so it’s not really his fault..but we had higher expectations.
He said it was obvious that i have ‘orthostatic intolerance’ (rising heart rate and dropping blood pressure upon standing, a total duhh haha), but he doesnt want to do anything but what im already doing, which is drinking more and attempting exercise. He did however run a test called a Catecholamine Test, which measures the level of catecholamines (norepinephrine, epinephrine, and dopamine) in the blood stream. Catecholamines are produced by the adrenal glands. If i understand correctly, dysautonomia can cause an increased level of norepinephrine upon standing, but another thing can cause an increase- a tumor (usually benign) on the adrenal gland. I dont really line up with that though. The way they performed this test was by putting in an IV line in my arm (they tried it on my hand and missed, i hadn’t drunk anything, oops!). They had me simply lie down for a few minutes and relax, then they came in and drew blood from the IV, took my blood pressure, and had me to stand up and take my blood pressure every 2 minutes for 10 minutes, then draw more blood from the IV. I should be getting the results anytime now.. but i dont expect anything to reveal anything for me. Nothing ever does.
Now it’s just a waiting and see what happens thing i guess? We are looking into getting into a program at the Vanderbilt Autonomic Dysfunction (by the way, if your wondering what autonomic dysfunction is, visit dinet.org.) Clinic which has specialists in that field who could look into my case with more details and such… with more specialized testing. I was extremely dissappointed in my cardio visit all last week, but i’ve come to realize that i’ve held on this long, i can hold on a little longer. Things will change eventually. I just have to be patient.
Here’s a few pictures from the trip to Nashville:
Well i guess that’s my update for now…i will update again when i have more news!
Thanks for reading!!