I recently got a port for fluids and ect but the dressing that the home helth says is absolutely the best doesn't stay on well so I've been using the tape they gave me to keep it on and they also think is the best. I'm reacting to the tape and when I take it off I'm sticky everywhere and I can't get it off without lot's of scrubbing... to the point of bleeding. it doesn't matter what I use. And that could really raise infection risk so I'm looking for suggestions for tape, getting tape residue off, skin protectant or a dressing that you have found works well. Thanks!
#EhlersDanlosSyndrome #MastCellActivationDisorder #PosturalOrthostaticTachycardiaSyndrome #Port #tetheredchord #ChiariMalformation
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
I can’t eat. Haven’t been able too since August. I keep ending up in the ER for fluids and pain meds. Now my doctor is having me meet with a vascular surgeon to discuss placement of a port and leaving a standing order for infusions twice a week.
I am weak and tired all the time. I am falling and bumping into things. Stumbling over myself. I started working again for the first time in over 5yrs at least because we cannot afford my medical bills and are on the verge on bankruptcy.
But I love taekwondo. And I suck at it. And I am weak. But I try.
Can I still participate with a port installed?