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    • #20507
      Michelle Gonzaba

        Myasthenia Gravis News columnist Shawna Barnes recently wrote about living with an implanted port. As someone who doesn’t have experience with a port, I found her column really informative and interesting.

        Do you have an implanted port? Have you had one in the past? What are your experiences with an implanted port?

      • #20645
        David S

          I was hoping for some responses.

          Does that mean that no one has a port?

          Thank you in advance for posting.


        • #20660
          Bill Suphan

            I had a port put in and had no problems with it.  After about a year or so they decided to take it out.  I don’t recall why it was removed.  It was put in because I was considered such a “hard stick” when it came time to get infusions.  I now get IVIG and Ultomiris infusions and only rarely have serious problems getting “stuck” now.  I do drink more water before infusions than I used to.

          • #20667
            Douglas Manning

              I’ve had ports (Powerflow Apheresis ports) in my upper right chest since the summer of 2018. They have been an absolute benefit for me as my gMG is tough. I need biweekly Apheresis treatments and eculimazab infusions. It makes access so much easier, nearly painless, and virtually foolproof. It is also wonderful to have my arms free during treatment and it takes away stress on the caregivers who need to access my veins for treatments.

              I’m tall and relatively broad-shouldered so, I cannot say that I have ever felt as if the ports restricted my movement, nor do I find that they are intrusive when I lay on my back, side, or stomach. I also really like that the access points at my elbows no longer look like so beat up, (On more than one occasion I’ve seen ER staff have raised eyebrows when they need to do a blood draw and almost immediately ask me if I have use illegal intravenous drugs). I do have a small set of bruises on my chest from the ports because they are accessed so frequently, but that is not a bother to me.

              Perhaps the biggest advantage to the ports is how much faster my Apheresis treatments are because of the higher flow rates made possible due to the ports.

              I’ve have only had the ports clog on a very few occasions, and each occurrence was quickly rectified through a TPA treatment of the port.

              SO, I can think of only positive things to say about my experience. I hope that if ports might be recommended for you that you will have the same excellent results.

            • #20669

                I have had a port for over a year now. It has been a God send for me. It was taking 6-8

                needle sticks to have one IV. I am thankful and happy to have my port.

              • #20670

                  I have had a port since 2018 for chemotherapy for thymic cancer. They use it for continued infusions and contrast for scans etc. I have no issues with it.

                • #20886

                    I had a port placed >7 years ago; which had to be replaced by 2 “vortex” ports to support PLEX. Like any implanted medical device, there are risks—I’ve had my vortex ports in for 6 years and last year one had to be removed b/c I had blood clots in the subclavian and internal jugular veins. Prednisone killed off my venous excess, so I still have one in place (and chronic blood clots)—fortunately, clots in the arms/neck are less likely to cause pulmonary embolus. I have opted to have an a-v fistula created so I can eventually get rid of the other port—this is not standard; however, I’ve been surviving on PLEX q2wk for the last 5 years and I can’t risk losing access. In the beginning the ports where painful, then annoying and now I don’t even notice it—it is far better then being stuck 7-8 times to find a tiny vein that blows anyway

                  • #20888
                    David S

                      Thank you Karen for your response.


                    • #20991
                      Ari Maayan

                        I have gMG and oMG which means 2 days a month of IV/IG, plus 2 days a month of an infusion of Ketamine, as I participate in a clinical trial at my VA hospital. So you might think, hmmmm, 4 sticks a month….not so bad. I wish that were true. Unfortunately, I am one of those, “Difficult Sticks”. I have rolling veins so they tell me.  Getting access to vein can be a major challenge. It once took one and a half hours to finally get a vein and then during the hour long infusion of ketamine, the needle popped out of my vein but stayed subcutaneous  which resulted in a subcutaneous bubble, the size of a grapefruit. Not fun.

                        So, my care providers have been on my back for a long time trying to get me to agree to get a port. I have resisted due to fear. All of the fears that everyone (I believe) who has a port has dealt with before agreeing to get one.

                        I had hoped to see lots of negative feedback about the port in this discussion chain. I was a little shocked because those negative comments, for the most part, didn’t appear. That doesn’t mean that I have decided to get a port but I will invest more time and effort into getting a broad range of opinions, especially in the medical literature. To date I have resisted putting that effort into my “research project”. I will now do so.
                        Ari Maayan, PhD

                      • #20998
                        Winston D Roden

                          My port has been a blessings.  When I first started getting IVIG it was relatively simple, but then I started having difficulty.  Hard to stick, vein blowing out, having to move it during the infusion and so on.  Then one day in Infusion RN asked if I had considered a port.  A call to the doctor, a trip to the hospital for the implant, which I stayed awake during, and have never looked back since.  I say again, it has been a blessing.


                        • #20995
                          David Monti

                            I have the bard power flow ports since 2018.

                            they work very well and I don’t notice them at all doing my normal activities.

                            I needed plex treatments a few times a week during my hospital stays .
                            now I only get plex once a month .
                            I’m very happy with the way they work and the ease of getting my treatments .

                          • #21001

                              Thank you Shawna for article, and everyone else who has replied. This is all great information that I needed to find about having a port inserted.

                            • #21002

                                Thank you Shawna for article, and everyone else who has replied. This is all great information that I needed to find about having a port inserted.


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