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    • #23239
      Brittany Foster
      Keymaster

      I know that with all the IVs that I have been getting and all the blood work that I have needed in the last year, my veins are absolutely terrible. I have an unusual vascular anatomy to begin with because of my congenital heart defect and when bad vein access is mixed with this it can be torture ! Doctors have been thinking about how to get me more nutrition and hydration for awhile now and it looks like the next step will be getting some types of infusions and hydration on the days when I don’t feel well. Since I don’t have good vein access and don’t even have good access for a PICC line, they are thinking of placing a port.

      How many have experience with a port? Do you have one yourself? What is the port mostly used for and how has it benefited you?

    • #23253
      Jim Sparrow
      Participant

      @brittany-foster – I was the happy owner of a port for 3 1/2 years in the early 2000’s.

      My port was implanted for IV infusions of gamma globulin, which I was getting about 90 times per year. I’ve been getting IV gamma since the early 90’s, and my veins were becoming badly scarred internally from overuse. The port made access so simple and quick, I could have pretty much done it myself (except IVgG is a blood product so they only administer it in a hospital setting).

      Unfortunately, following an infusion I developed a blood infection (sepsis) and ended up in ICU for a while. The port was obviously removed, and my docs cautioned against getting another due to circumstances. I’m a Type 1 diabetic, as well as being immunocompromised, hence far more susceptible to possible infections.

      If you get one, I suggest the right side upper chest (under clavicle), as I found my seatbelt (shoulder strap) rubbed on mine when implanted on the left side.
      Jim

    • #23254
      Donna Dee Tubbs
      Participant

      I have a Hickman.. it is only used for Remodulin 24 hr a day. it’s not that bad, you can’t take bubble baths or swim. It has and is the best solution for me to receive my medication until the next stage.

    • #23259
      Brittany Foster
      Keymaster

      @jim-sparrow so true about the left side with the seatbelt! These are things that I never really gave much thought to before but I realized were an issue when I got my pacemaker placed. My pacemaker is on my left side so I know they won’t be going in that way. My vascular anatomy is different so I am curious about how they are going to approach this and how they are even going to get the right access. We will see! I really appreciate the words of advice and I know it is encouraging to hear of successes with the ports.

    • #23260
      Brittany Foster
      Keymaster

      @donna-dee-tubbs they discussed that with me too because it is placed in the chest but the vessels in my chest are actually smaller because they are all collateral blood supply vessels and the access is even worse than my arms!

    • #23261
      Gayle Ward
      Participant

      I had a portacath for a year while I had chemo and many blood draws. It was great. They are easy to access and blood draws don’t hurt. It was a god send. It should make life easier, it did for me. Best wishes

    • #23263
      Colleen Steele
      Keymaster

      @brittany-foster my son had a port pre-transplant for milrinone. He also had one for a while post-transplant and then again a few years later for a special treatment he was receiving for rejection. Like you his veins are spent. When it becomes next to impossible to find one then the port really is the way to go.

    • #23269
      Jim Sparrow
      Participant

      @colleensteele

      When it becomes next to impossible to find one then the port really is the way to go.

      All this talk of ports / portacaths has made me decide to request another one 🙂

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