How many ports out there?
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July 6, 2017 at 10:57 pm
Just wondering how many out there do infusions by port or by stick in the arm/hand.
I am two months diagnosed with CIDP. It is clear that IvIg will be my first line of defense. I see a lot of people talking about ports. I’ve had ports in the past so I’m not afraid of them at all.
What I’m wondering is how long did you put up with infusions in your arms before you got your port? I am always a hard stick so I want to get it as soon as possible, but only if I’m sure the infusions work.
Did you suggest it to your doctor, or vice versa?
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July 7, 2017 at 12:55 am
I am at 15 months and still doing arm/hand sticks. I too can be a tough stick but the nurses at infusion center do a good job of getting it first try most times. Discussion of ports has not come up with doc yet
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July 8, 2017 at 3:58 pm
Cer100 and Jim-LA: Thank you both for your quick responses. I know IVIg does not typically require a port, but I have always been a hard stick (blood draws were often done in my feet when I was really sick), and I want to be proactive, rather than suffering through new exuberant nurses all wanting to take a “stab” at me.
Thanks again. I’m new to the group and am enjoying all the information and kind folks here. 🙂
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July 7, 2017 at 1:25 pm
IVIg doesn’t require a port. If one wanted to speed up their infusion time, a PICC line would be able to handle a larger volume than an IV line. A port is for high volume treatments such as Plasma Exchange. Ports come with a higher risk of infection and require regular maintenance. Please see my more detailed posts about ports elsewhere in the forums.
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July 7, 2017 at 5:52 pm
Please see this post for more info about ports: https://forum.gbs-cidp.org/topic/please-educate-me-on-plasmapheresis
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August 22, 2017 at 5:55 am
Hey Teaberry,
I was recommended a port for plasma exchange by a doctor here in Philly. I am getting my second opinion today from UPenn. I was also recommended a port when I was supposed to start IVIG.
I’ve had one for plasma exchange before, when I had GBS, age 8 or so. I got it put in under general anesthesia, but, I thought I remembered them taking it out while I was under local for some reason.
Anyway, I’ve never had one while outside of the hospital. If plasma exchange is the next step, I’d be curious as to how this will change my life.
Keep us updated on your port journey!
Liam
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September 14, 2017 at 3:43 pm
Hi Teaberry,
I have an infused port on the left side of my chest. The infusion nurses recommended I receive one after multiple attempts during each infusion to get a vein. This went on for about a year or so. I’ve had the port for 2 years now. Good luck!
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September 14, 2017 at 6:08 pm
I need to go re-read the port posts. Looks like PE is in my future but I am really not wanting a port although I can’t fully rationally explain my resistance to one…
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September 14, 2017 at 8:02 pm
My replies under rituxin may be of some value to you regarding ports. I have had hundreds of vein sticks, multiple perma caths with poor success (infections) and flawless success with my Vortex Ports going on five years now. Good luck with your future treatments
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November 8, 2017 at 12:26 am
Port owner – right here! Love it. Decided to proactively have it placed after being told IVIG would be continuous for at least three years (if not forever).
No regrets. Never bothers me. I’m a 38 year old female and it’s generally not visible in gym clothes or swimwear. Giving it a thumbs up!
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