Dysautonomia (Autonomic Dysfunction) Community
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Hey gang, wanted to check in as I know it's probably been a while since I've updated you all on what's up with me. My dysmotility/gastroparesis took a sudden turn for the worse and I also got a gastric ulcer from my meds sitting in my stomach irritating it, SO I considered my surgical options and decided to forgo the gastric pacer and get a G/J (type of feeding tube that goes through the abdominal wall and into the stomach for decompression, into the middle section of the small intestine for feeds and meds). Well, my planned two day hospital stay got SUPER extended (over two weeks) due to complications and problems tolerating the formula. I'm finally on an elemental formula that's working well for me, and scheduled to go in Tuesday to revise the surgery. (Due to the complications they ran into, they weren't able to complete the original surgery as planned-Whee!) Other stuff: in the process of being worked up by genetics for mito, other metabolic disorder, EDS, and/or a novel mutation that's my very own (LOL!) via muscle biopsy and blood tests. Learning all sorts of fancy new jargon like ”exome.” Ruled out CDG and MNGIE. Plethysmography showed venous valvular insufficiency in left leg but not right, so need to get back up to vascular department at CCF to see what that could possibly mean. Very strange ... But then, I lost sight of normal a long time ago, right?  :-P  I hope everyone had a great Passover, is having a happy Easter, and/or is enjoying the start of spring! Gentle hugs,

Heiferly.
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Wonderful to hear from you!  It's been a long time! On the other hand sorry to hear that you have been through so much not great stuff. Hope it all starts getting better soon for you.

Hope in spite of it all you had a good Easter.
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1323747_tn?1364810482
Hope you surgery goes well this next week.  "Exome" indeed!  Had to look that one up.  Remind me not to play Scrabble with you as I think you know too many new words!

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May God grant you a speedy recovery post surgery tomorrow, Heiferly!

Mtgardner- you are funny with the Scrabble comment! :0)
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I'm sorry you've had such a rough time. I pray that everything goes well with your surgery. For those of us with chonic illnesses we have to endure so much, all I can say is try to stay strong, I think we are very strong people to go through what we do.
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