Last reply 4 months ago
Possible port

Hi , just wondering if anyone has any advice regarding having a port placed for Tysabri infusions? Both my ms nurse and ward sister of my infusion ward have told me it’ll be my best option.

My veins are okay but apparently too deep and every infusion I have to have the vascular access team down to ultra sound my arms , I’m willing to put up with it if the pros and cons don’t weigh up but i can’t find a lot of first hand information about on ports.

If anyone can share their experiences with having a port , that’s be great.

Thankyou , much love 💕

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stumbler
4 months ago

@jade770 , this question has just recently come up :-

https://shift.ms/forums/topic/subdermal-port-placement


jade770
4 months ago

@stumbler i did read that one when it popped up but no one commented about their own experiences only that to do what’s best for the person and not what the nurses were trying to push . I’m just trying to work out if a port is te best option or to just put up with being ultrasounded every time :/


stumbler
4 months ago

@jade770 , my veins tend to hide as well. But, I got told to drink a glass of water beforehand, which seems to help.


jade770
4 months ago

@stumbler mine are too deep apparently , I did try the water trick too but didn’t help unfortunately x


soprano
4 months ago

One of my fears about the port (I’m the op of the other thread) is that it’s not going to be used for several months of chemo then removed. I hope to be on Tysabri for many years, so if I get a port and dislike it, I’m stuck with it forever unless I want to go all DIY to deal with it myself.


stumbler
4 months ago

Here’s a page of detail about the subcutaneous port :-

https://www.macmillan.org.uk/information-and-support/treating/chemotherapy/being-treated-with-chemotherapy/implantable-ports.html

Hopefully, it will allay your fears.


strongerlip
4 months ago

I have a port for Tysabri infusions (since 2015) and it would be impossible to get my infusions without it. I went through a lot of awful experiences with peripheral iv insertions and the straw that broke the camel’s back was when one session took them 12 hours to get a damn vein.

I will say it took a while to get to a point where it was smooth sailing. They are much more familiar with using ports in the US (where I had mine initially inserted). When I moved to the UK it was a nightmare in the beginning. Nurses weren’t familiar with it and when they inserted the first time, they couldn’t get blood to flush back to check if it was patent. It took them hours to figure out what to do and ultimately they ended up finding a radiologist who would insert it under x-ray guidance and check it was patent by pushing contrast through.

This worked for a month or two and then I had another nightmare experience. While flushing the port before starting an infusion, the port malfunctioned. I won’t go into the awful details but it was pretty traumatic. To this day I don’t know what went wrong, but I suspect it had something to do with the nurse’s lack of experience.

I did end up having another port inserted and the second one was placed in a much better location. My first one was placed low in my chest and there were fears it was close to flipping over. I continued to receive infusions through x ray guidance and I have had the same nurse (not the one who was there when it malfunctioned) for all my infusions to be sure she knows what she is doing. It has been almost 4 years now and I have been pretty happy with it.

My experience was a bit messed up, but a lot if not most of the bad stuff could have been avoided. I still do highly recommend a port and I would not be able to get Tysabri without it. If you have more questions send me a message, I know how little information is out there about ports and Tysabri, especially in the UK. Id be happy to be an anecdotal resource


jade770
4 months ago

@strongerlip thankyou for sharing your experiences , it’s definitely reassuring that even after you’re not so nice experiences you’d still recommend having a port , it means it’ll be worth the hassle if mine plays up or I have inexperienced nurses too . I have been struggling to get information about ports for ms instead of chemo so I might have to take you up on your offer of picking your brains a little , thankyou very much for the offer btw


jade770
4 months ago

@soprano if you do decide on a port , please don’t go all diy if you don’t like it , I don’t think us clumsy lot should be allowed near tools , we’d do more harm then good 😂 but that’s definitely a good point about being stuck with it if it’s not right for you , I’m going to have to ask my ms nurse about that before making my decision, it’ll be nice to know I’ll have an escape plan if I don’t get on with the port xx

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