Join the Conversation on
76 people
0 stories
7 posts
Explore Our Newsletters
What's New in

My port is a pain (literally)

My home health nurse just left after attempting to access my port twice and failing both times. I’ve got to have another nurse come out and try. This is happening every other week. My doctor approved my port for my fluid infusions because I have almost no vein access and it always takes multiple attempts (even with the ultrasound team) to start an IV.

I was really hoping that the port would help prevent multiple sticks.

I’ve heard about products like the “Amanda Stabilizer” from BD that can help prevent multiple stick attempts but I have no idea how to go about getting them. My medical supply company can’t even get me a lower profile Huber needle.

My doctor suggested that I’ll probably eventually have to learn to access my port myself but if multiple medical professionals frequently have issues doing it, I don’t have a lot of faith that I’d be able to do it. #EhlersDanlosSyndrome #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Port

1 reaction 3 comments

Port Tip

When sleeping with your port accessed, tape the “pig tale” to your chest so it doesn’t get caught on anything. Saved my accessed port many times! #Port #Portacath #Lifehacks

1 reaction 2 comments

Dressing/ tape sticky

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


Mental health clinic #Port Coquitlam #Advocacy #help

My Mental Health "team" refuse me my rights and do not treat me fairly or equally. For years its been like this and its only getting worse. what do i do? im not sure... the walls are closing in and i feel like i am being snuffed out

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

Port and activity #Port #taekwondo #MartialArts #InflammatoryBowelDiseaseIBD

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?