total parenteral nutrition

Story

The author, a white woman wearing a patterned shirt, and her horse.

•

How I Balance Work, School, and Life With Chronic Illness

People always ask me “how I do it.” They want to know how I can be so ill yet work full-time, go to school, and own and ride a horse. “I don’t know — I just do it,” has always been my answer. That’s a lie, though. I don’t “just do” anything. I break, cry, [...]

Save

Story

How I Felt When I Was Put on a Central Line for My Gastroparesis

JenLave

•

Gastroparesis

How I Felt When I Was Put on a Central Line for My Gastroparesis

Here I am, lying in a hospital bed in a small room with the smell of stale chicken and vegetable broth circulating through the air. I hear the sounds of rolling computer carts, other patients yelling in pain, and nurses and doctors talking amongst themselves about each patient’s care. I feel like I am trapped [...]

Save

Post

Angel

•

@miss_angel051

Sepsis 3y

See full photo

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

1 reaction • 20 comments

Post

•

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?

11 comments