total parenteral nutrition

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    Nervous 😟

    Just venting my anxiety. I’ve been in the hospital for almost a week. I was forced to come in to the ER when I woke with a 102 fever and palpitations much more severe than my usual POTS flutters. I was diagnosed with #Sepsis and #SIRS - scary. It took a while for the cultures to come back, but they finally narrowed the infection down to my #Port . Tomorrow I have to go down and have the port removed and have a #PiccLine placed so I can continue getting my #TPN . I’m not usually a nervous person, but I am so anxious about the removal. Could be some #PTSD related to IR and my j-tube days or just fear of the unknown (pain, sedation, etc.). Local anesthesia is not always effective for me so that’s one thing on my mind, plus I don’t like not having all the details ahead of time. 😟
    I’m sure I’ll be fine once it’s said and done but this on top of not feeling well has me 🤢
    #Disability #Hospital #AutonomicDysfunction #Gastroparesis #TotalParenteralNutrition #Malabsorption #FanconiSyndrome #MetabolicCondition #MultipleSclerosis #Hypoglycemia #AutoimmuneImmunodeficiency #SmallFiberNeuropathy #OrthostaticHypotension #Anxiety #interventionalradiology #AutonomicNeuropathy #PowerPort #Portacath

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    Help please! #EDS #TotalParenteralNutrition #TPN #EhlersDanlosSyndrome #FeedingTube

    I can’t eat enough to sustain myself. At the moment I am being feed through my veins, but my peripheral veins aren’t working for long term nutrition.
    Now I have to choose between getting a port for tpn or getting a surgical gj-tube. The problem is that they don’t know if I tolerate the tube (I didn’t tolerate the nj tube) and they originally didn’t want to place a central venous access because they were scared that my veins would rupture. So now I have to decide if I want the tube first and maybe have it be for nothing, or if we should place the port right away..

    The question is: does anyone have experience with getting one or both and also has Eds?
    What would you guys do? Should I wait to get a port placed until they find a better hospital that isn’t scared they mess up or should I get the port to get nutrients?

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