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    • #20581

      Hey all! 

      I recently read an article on Myasthenia Gravis News called “What They Don’t Tell You About Getting an Implanted Port”

      Many of us with LEMS also have implanted ports (Mediports) and some of you may be considering getting one if you don’t already have one. 

      I got my port implanted in Feb 2017, about a year after my diagnosis and it has been a LIFESAVER for me! 

      What about you? Do you have a port already or plan to get one?

      If you have one, how long have you had it? Have you had any issues with it?

    • #20618

        Don’t have one. I am a very hard stick because after 8 + years of IVIG there is alit of scar tissue in the veins in my hand. They are now using the ultrasound to locate a vein in my forearm and I leave it in for two days.

      • #20623

          I have a port – I’m a tough stick and my veins are shot after years of infusions. I get 5 days of ivig every 18 days. I have never had any issues with it, though I have a fabulous infusion team!

          if anyone has questions, I am happy to video what it looks like to access the port when I go in next week. I’m also happy to answer questions.


          • #20625
            Price Wooldridge

              Great to have infusion nurses that you know and trust. Ashley and I were just talking about that. We as patients feel so much more comfortable working with the same nurses over and over, knowing and trusting them and their techniques around the port.

          • #20633
            Y Petrie

              I had a mediport for over a year with no issues.  Infusion nurse recommended it due to scar tissue in the one vein that is easy to access despite the scar tissue – glad I took her advice.  It was replaced in August 2022 with a double lumen vortex port so I can do plasmapheresis (I have myasthenia gravis and lambert eaton).  The double lumen port is much larger and can bleed below the skin after plasmapheresis (large doses of heparin post procedure in both lumens of the port).  When this happens there is swelling, it is painful and it sends pain radiating down my arm.  Ice helps.  Still worth the larger port so I can do plasmapheresis, which I respond very well to.

              • #20636
                Price Wooldridge

                  @drpetrie that’s very interesting. I was unaware of this type of port and will look it up. Despite the issues you relate, I’m glad it is accomplishing what you need.

              • #20657
                Y Petrie

                  Here is an example of a double lumen vortex port.  Vortex Dual Port – Kimal

                  Plasmapheresis removes blood from one side of the port and puts it back in the other side of the port with large 16 g needles (after enough sticks can’t feel it much). They remove 60% of my blood volume each time, keep the plasma (which has all my antibodies) and then put back in the rest (red and white blood cells plus platelets) along with albumin.

                  The plasmapheresis nurses don’t like anyone else to use it, which is unfortunate.  The original single lumen mediport usually a charge nurse (when I was in hospital or ER) would come in and access it or change the dressing, and the nurses would draw blood daily and use it for IV access.  Last time I was in the hospital no one would touch the vortex port (except the plasmapheresis nurses), they put in an IV line for access (but never needed it) and then they would send in a tech every morning to draw blood from a vein.   Sometimes I feel like a pin cushion!!!

                  • #20660
                    Price Wooldridge

                      Y Petrie thanks for the link to see one of these. When you first mentioned it, I went out and Googled to see it.
                      I’ve had my Bard Power Port for years, and it ONLY get’s used for my infusions. And I prefer it that way because of the sterile, precautionary measures that must be done to access it. No blood draws, no ER nurses trying to use it.
                      And thank’s for your explanation of plasmapheresis and the process!

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