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  • Peg B
    replied
    Port for IVIG - got it

    Hi Sean,

    Thanks for the information. I got the port Nov. 2011, but ironically treatment stopped for two months as insurance changed. I resumed treatment at an infusion center on March 1. It has been a blessing to have the port and to resume treatment.

    I did not understand why you have the needle still in the port between treatments. Could you explain that please. Thanks, Peg

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  • shass5
    replied
    Hi Peg,
    I had a port inserted two months ago after 5 years of peripheral IV's that would occassionally fail and require further nursing visits thereby upsetting my very tight schedule. I get my IVIG at home and finding veins in my arms became too difficult. I was delaying the port as long as I could because I am a very active person (still playing baseball, hockey and basketball in competitive leagues and running and working out with weights) and the thought of having to stop my activities worried me. The port was placed a little lower than usual and it does stick out a little so wearing tight fitting shirts would be a problem. When the Huber needle is in it sticks out very noticibly ( about an inch). I wear a sweater when working as I am discreet about having a port. I am back to running, hockey and at least hitting in the batting cages. Could I cause problems with the port by doing this? Possibly but I have to live life and do what I can now. My basketball is done as I won't risk getting an elbow to the port. I was told the port can be accessed approximately 400 times before replacement. During the nice weather I plan on taking the needle out between infusions if needed and possibly accessing the port myself. Accessing a port is a serile procedure so it is different (more setup) than inserting an IV. There is less pain accessing the port than there was putting in the IV. Post operatively there was little to no pain. I have alot less stress now on the day of accessing the port and during the three days I get the infusions. No more 3-4 sticks to find the vein or having the IV fail at 9pm and having to wait for a nurse to come out. If your veins are gone I would recommend a port, at least based on the two months that I've had one.
    Good Luck
    Sean

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  • Peg B
    replied
    Hi Mark,

    Thanks, for this. Are you waiting because you don't "need" it yet? and a "procedure is a procedure" or is there another issue? I can see waiting as this whole thing is bothering me a lot. I think it makes me "more sick," which it does not but I would have an always with me reminder and I don't like that. I had forgotten or did not know you have been on IVIG so long. Has it always been every 2 weeks?

    Thank you also for the birthday wishes on the other thread. The graphics were a very nice touch. Sincerely, Peg

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  • Mark Kirby
    replied
    I've talked to the nurses at the infusion center I go to about a port. They've been using my hands for IV sites for almost 12 years, so I'm not an easy stick.

    The issues with a port, as I understand it are as follows.

    It has to be flushed at least once a month. If you don't, it will clog and won't be usable. If your normal schedule for IVIg is less than a month, then this is a non-issue.

    It does require a surgical procedure for its implantation. This is a "routine" procedure and shouldn't be an issue, but a procedure is a procedure.

    They only last for a limited time. You may need to have it replaced every few years.

    For me, I've decided to stay with the IV sites as long as that is a feasible route. I know that at some point it will be virtually impossible to put a site in my hands and I'll probably go with a port at that time.

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  • Peg B
    started a topic Port for IVIG

    Port for IVIG

    Hi,

    What information or opinions do you have about ports for the infusion. Please let me know. I need more information. Thanks, Peg
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