Tuesday Infuseday

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Dysautonomia Awareness Month: Day #4

Fact:  POTS and other dysautonomias are often misdiagnosed.  The average time to diagnosis is 5 years and 11 months.  85% of patients are told it’s “all in their head” or given similar psychiatric labels prior to receiving their Dysautonomia diagnosis…however, research shows that POTS patients are no more likely to have psychiatric disorders than healthy controls (Dysautonomia International).

Dysautonomia Awareness Month: Day #3

Fact: The majority of Dysautonomia patients- specifically POTS patients- are hypovolemic, despite adequate hydration.  Standard blood and urine tests may not always detect this hypovolemia, as the patient is typically deficient in plasma and red blood cells.  Blood volume analysis with a radio-tracer can be used to evaluate a POTS patient for hypovolemia (Dysautonomia International).


Hypovolemia, or low blood volume, is a daily struggle for me.  In order to combat this issue, I receive two to four liters of IV Saline each week, as well as push a liter or more of water and Pedialyte through my j-tube each day.

October Is Dysautonomia Awareness Month!

What is Dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, temperature regulation, etc.

The Autonomic Nervous System
Ribbon for Dysautonomia Awareness at Duke Raleigh Infusion Center
Stronger Than Dysautonomia
Stronger Than Dysautonomia!

Duke Admission, Day 2

Admitted at Duke. 4L of IV fluid today & some more testing. Not entirely sure what the doctors have in mind for me yet…but they’re certainly not happy with the way things are now. We’ll see. IMG_2472So far while here, I’ve starting two new medications for my dysautonomia-  Mestinon & Bystolic. Gallbladder removal surgery pushed til Wednesday (?) because the doctor wants me to be more stable before he operates. Wednesday cannot come soon enough! These ‘gallbladder attacks’ take my breath away, & I SO cannot wait to get this darned thing out of me. Some of the craziest pain I’ve ever experienced! Goodness. Hoping to get out of here soon.. 🙂