posturalothostatictachycardiasyndrome

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    18 months later as a tubie

    I know it has been a while since I last updated y'all on my progress with living with a GJ tube. It has been an experience! I've had to 9 tube replacements due to my tube moving, twisting and countless clogs. After so many issues, my gastrointestinal surgeon felt that I needed better assistance from the Internal Radiation team or IR for short. With the IR team, instead of the GJ tube being replaced through endoscopy and replace while I am awake but giving something for pain. The first time I had it done, I was very nervous because of knowing I would be awake for it. I was able to watch the team set up the room with the monitors and the x-ray machine over me so they can see where to go. I have a completely different tube than I had from 11 months ago post. The photo above is me now. I can say I have had only 2 clogs with this new tube and it was so easy to unclog with a can of Coke. I'm still adjusting to live with having this GJ tube forever but I'm being patient with myself during the process.
    #EhlersDanlosSyndrome #Gastroparesis #GJtube #FeedingTube #LifeasanEDSerwomanofcolor #MastCellActivationDisorder #posturalothostatictachycardiasyndrome

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