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Feeding Tube Awareness Week Day 1

Today is the beginning of feeding tube awareness week! A year ago if you had told me I would be feeding tube dependent in less than 6 months I would be feeding tube dependent I would say that's crazy. Anyways here I am and its not super scary like one might think.


Day 1: Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary.

I am tube fed because I have gastroparesis and dysautonomia.

Gastroparesis: Delayed stomach emptying, which means I can not tolerate normal amounts of food because it doesn't leave my stomach as fast as it should. The symptoms include feeling full, nausea, and vomiting (there are many others, these are just the ones I deal with the most). Gastroparesis is caused by nerves not firing and telling the stomach to empty. Due to gastroparesis I can only consume a few hundred calories a day so I receive most of them through my tube that goes into my small intestines instead of my stomach.
A Nice Graph of a Not so Nice Condition

Dysautonomia: This is the name from a group of conditions causing autonomic nervous system dysfunction. The autonomic nervous system controls everything your body does without you having to think about it. This includes breathing, food digestion, blood pressure and heart rate control, temperature regulation and many more. There are many types of Dysautonomia, each with slightly different symptoms although each patient will exhibit their own set of symptoms. I most likely have POTS or Postural Orthostatic Tachycardia Syndrome. This affects my cardiovascular system, mostly my blood pressure and heart rate. When I stand up my nerves do not tell my blood vessels to constrict causing blood to pool in my legs. This causes my BP to drop and my heart to work extra hard to try and stabilize it making my HR sky rocket and sometimes causing my to faint. One of the most important treatments for this condition in fluids. Orally I can only drink about 40-50 oz a day but then I get almost 3 liters through my feeding tube. By adding in a liter a pedialyte through the tube during the day my HR jumps went from over 100bpm when I stood up to only around 50bpm (for reference I would start around 105 usually and anything over 100 is considered tachycardia and the diagnosis criteria for POTS is only a 30bpm jump). Dysautonomia can also cause gastroparesis.




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