To Port…Or Not to Port?

This topic contains 6 replies, has 5 voices, and was last updated by  Collins22 1 month, 1 week ago.

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  • #114152

    LWolf
    Participant

    Hi everyone,

    One more post and then I’ll stop…

    Because I am receiving the 5 day loading dose in about a week or two, and then every 3 weeks after that, I have been thinking about getting a port. I have crappy veins and people usually have to use a vein finder machine on me, or call one of the other nurses, stick me a few times, etc to get bloodwork, IVs, etc. I do not want this and I talked to my neurologist about this and he said I could get a port if I tolerate and like the first round of treatment.

    What do you guys think? What was your experience with ports? I had one as a kid and it was fine. Any suggestions/comments/etc? I am going to search the word “port” but just need some recent suggestions.

    Thanks!

    Liam

    #114155

    Twiggy
    Participant

    Hi, I’m glad you are receiving treatment. Your life will gradually get back to normal. I have a vortex port with two chambers for plasma exchange. It was very painful for the first couple of days after surgery but now I am completely at ease with it and forget it’s there. I don’t worry that with some outfits it is visible because i’ve adopted it as part of me now and it makes treatment much easier. I am fairly slim particularly the top half of me and so it’s quite prominent. I can go jogging with it and it doesn’t restrict my life in any way.

    Regards

    #114156

    Jim-LA
    Participant

    If getting Intravenous Immunoglobulin (IVIg) treatments (and not PE) a port may be overkill. Consider a Peripherally Inserted Central Catheter (PICC) line instead.

    I too have veins that are hard to find and I hated being poked and poked by nurses who didn’t seem to care they were causing me pain and discomfort. Ask for a Phlebotomist next time, they are trained to deal with patients that have hard to find veins and you are less likely to have as much discomfort.

    I have had multiple central venous tunneled catheters (ports for PE) and 2-3 PICC lines for IVIg. Some of my port experiences are listed here:
    https://forum.gbs-cidp.org/forums/topic/port-a-cath-2

    Have you considered getting IVIg treatments at home using a PICC line?

    Getting IVIg through home healthcare is usually covered by insurance and is a lower cost alternative to a hospital. Plus, you are at home and can relax more while they drive to you. You and your doctor would pick an agency. Make sure the agency is listed as a ‘contracted provider’ by your insurance and confirm they will take your insurance as payment in full (maybe your insurance requires a deductible and/or some cost sharing). Then your doctor would need to write prescriptions for the home treatments. A nurse comes to your home and stays while the IVIg is being administered. You get personal attention and care this way.

    Another option to consider would be subcutaneously administered IVIg. SCIg is a newer option to the traditional IV’s. Subcutaneously administered IVIg does not require an IV or a port and some patients can give it to themselves, lowering costs substantially. Learn more about it here:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783

    #114158

    LWolf
    Participant

    Hi everyone,

    Twiggy,
    I had a port at age 8 for PE as well. I remember getting it and getting it removed pretty well. It was an interesting experience for sure. I hope that my life goes back to normal soon, like you said. Though, I have not ever been “normal”! Haha!

    Jim,
    I cannot receive subcutaneous or home IVIG because I have autonomic dysfunction, caused by CIDP, which causes my heart rate and blood pressure to jump around. Most importantly, last time I tried to get IVIG at home, my BP dropped suddenly and the home infusion nurse was not equipped to deal with it. I will not be getting infusions at a hospital, but rather a small infusion center at a doctor’s office. They are a little more well-versed in this type of thing and can monitor me better, have the equipment, etc. While home is comfortable, I need professional monitoring to make sure I am okay.

    A PICC line, though, is something I will have to inquire about. I have a few questions. I have been reading that you cannot bathe/shower with them or swim, etc. What do you do with that? Also, I read that you cannot bend with them in some fashion. How do you manage?

    I hope you don’t mind answering my questions. Thanks so much for your and everyone else’s support.

    Peace,
    Liam

    #114159

    Jim-LA
    Participant

    Liam, Ports pose the biggest risk of infections and have to be monitored and flushed regularly. Mine was on my neck and another I had was tunneled through my chest. I could only take a sponge baths when I had them, else I would have been at risk for infection complications.

    My PICC was in my Cephalic vein near my biceps and came out just before my elbow bend. This placement didn’t hinder my movements. Nor did I have any problem bathing because I used a waterproof PICC line cover. They have fashionable ones too. Here are some examples:
    https://www.amazon.com/PICC-LINE-COVERS-Waterproof-Protection/dp/B00AFIF0M0
    https://sleeksleeves.com/collections/arm-bands-and-picc-line-bandage-covers

    I hope you find treatment options that work for you.

    #114214

    cer100
    Participant

    Dont have a port (yet) and still need to do research for differences, pros, cons, etc but IIRC, a Bard port was suggested to me by the technician during a PlEx treatment. Until then I had only heard of the Vortex.

    #116152

    Collins22
    Participant

    I’m a 41 year old female. I’ve had a port for three years now. After the initial seven months of IVIG and Rituxin, my veins gave up. The port has been the absolute best! Mine is on the left side of my chest and I believe it’s called a port-a-cath. I was on very high dose immunosuppressants (CellCept) when it was placed, so it was a slow healing process. But, now it’s just a little button on my chest.

    Infusions used to be miserable. I had “great veins” but with repeated infusions, they started to blow. I would look down and my arm would be the size of Popeye’s. If you have to get infusions forever, like most of us, you’ll be happy with a port.

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