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Port Tips

Hi! I’m going to be getting a port soon because I receive IVIG infusions and my veins are all shot. I’m also going to be starting Benadryl infusions. My doctors have recommended it for a while, but with my crappy veins, I decided to wait.

I’m mainly looking for some inside tips/what you may have wish you knew beforehand

Like should I get lower cut shirts? Should I get tubbie clips so my tubbing doesn’t get caught? Should I get a specific type of port? Is there anything that you wished you could have changed about your first port placement?

Anything would help, thank you! 💖

#EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #Portacath #Ports #MastCellActivationDisorder #Disabled

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If you have a #Portacath, do you access it yourself? #Ports #PowerPort #Gastroparesis #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome

I’ve had a j-tube for 4+ years and have always taken care of everything myself. Today I had a port placed and I no longer have the j-tube. The hospital is setting me up with home health, case management, nurse visits, etc. to basically do everything (access the port, run fluids/tpn, and do anything else needed)... I expect this in the beginning, and I know I’ll need nurse visits for lab draws and such, but does anyone have a port and access it themselves and run their own fluids/tpn? I’m a nurse (currently disabled) so I’d be fairly comfortable doing everything myself. TIA

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surgery tips?

I know I have posted about this recently, but I am getting a port put in on monday. I am super nervous and stressed I am trying to be happy and positive about it, but considering I am writing this at 2:00am I don’t think it’s working. I think I am trying to cope with it by trying to be prepared as possible and researching etc. You can never be to prepared right!? anyway if you have any words of encouragement,advice,or tips that would be awesome. #Surgery #Ports #POTS #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #ChronicIllness #Anxiety #Asthma #AdrenalInsufficiency #nervous


Does anyone have any tips for getting a port?

I am getting a port!!!! I am excited and nervous. Most people probably wouldn’t be excited to get a port,but I am. IV saline has been the only thing thats helped my POTS. I think its going to help me getting my independence back! Does anyone have any tips? #ChronicIllness #POTS #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Surgery #Ports


PICC or port?

I have been get saline infusions I have only gotten 2 so far but they are amazing I know they will continue to help me and I want to continue to do them I have really tricky veins and we are having todo 4-8 sticks to get an IV in their is talk of getting a port or a picc my doctor doesn’t really seem to believe in getting a picc I am not opposed to either a picc or a port but I want to weigh my options what is your experience #PiccLine #Ports #POTS #Dysautonomia #ChronicIllness