Message Boards for the CF Trust

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maggsmcg

Posts: 60
From: Hemel Hempstead
Registered: 07-Nov-2006

Advice on Port Replacement
Posted: 09-Dec-2006 08:51

Reply

Looks like Shelby is going to have to have her port replaced (only had it since January). It keeps breaking down. They have put dye down it twice and taken x-rays - cant seem to find out what is causing the problem. Question I need to ask is I have heard that they will not put it in the same place twice! Does that mean it will be on the other side of her body?

You see we were told that the insertion scar would be small and discreet - it isn't! It is quite noticeable on her right shoulder, she is already very conscious of it if she wears anything strappy and she is only 6. If they insert a new port on her "left" side she will end up with two scars. So I was wondering if anyone has had their port put in a different place but on the same side of their body?

MandyL

Posts: 26
From: Lanarkshire
Registered: 06-Nov-2006

Re: Advice on Port Replacement
Posted: 09-Dec-2006 10:36

Reply

Hi there, sorry to hear your daughter is having trouble with her port. My daughter did have to get hers replaced also and your right it did have to go on the other side. My daughters scar is underneath her armpit though, not directly underneath but down a bit so you dont see it when she has her arm down. Maybe you could ask that it gets put there instead of at the shoulder where its visible. My daughters surgeon was very aware that she was a girl who would become consious about things like that so its worth having a chat with your daughters surgeon about it all. Hope evrything goes ok. x

justme

Posts: 188
Registered: 06-Feb-2004

Re: Advice on Port Replacement
Posted: 09-Dec-2006 12:17

Reply

They may not replace the port in the same place depending on the reason why the old one had to be removed. If it was due to infection they are less likely to replace the port in the same place due to the fact the infection may still be around and dont want the same thing to happen to the new port. they may also have to switch positions to the other side of the body if the vein is no longer useable in which they have to put the port line. I recently had mine replaced in may for the third time. My second one went into a different place than my first becuase the first area had become very bruised and tender from the attacking it took to needle my first port (which i must say is the reason why it was being replaced as it was becoming worse to needle than having a long line or canula put in! due to it getting buried in breast tissue). Then unfortunately my second port broke down after nearly 6years service. However my problem was with the actual line which got blocked and had some holes in it and had started to curl back on it its self, so it damaged the vein enough to make it not possible to put another port in the same place, so my current port is now actually back in the original place of my first one.

It is possible to have a port put in on the same side of your body but in a different place but she will still end up with a scar where they have to actually put the port in wherever it is sited, it may just mean they may be able to reopen an old scar to put the new line in as well. Also they should use the scar they created to put the old port in to take it out again to minimise the amount of scars she will have.

Hope some of that in there is of some use. feel free to email me if you want to ask anything else-my email should be on my profile.

maggsmcg

Posts: 60
From: Hemel Hempstead
Registered: 07-Nov-2006

Re: Advice on Port Replacement
Posted: 10-Dec-2006 19:11

Reply

Doesn't appear to be an infection just won't work.
No one can tell us why! Thats what we are trying to find out. Surely if there was an infection she would have some signs, temperature or the site would be painful?

jodie

Posts: 14
From: west midlands
Registered: 20-Nov-2006

Re: Advice on Port Replacement
Posted: 10-Dec-2006 22:23

Reply

hi i had my port changed last week i had it 11 yrs which is really good,it didnt stop working it was just difficult to get the needle in.so i had that one took out and new one put in on the other side that scar is by my arm joint but my old one is quite visable,so also got to.i dont think they put them on the same side cause they like to give the vein a rest .(i wanted mine on same side)
hope your daughter is ok i know she is young but has she gets older the scar should fade mine did
jodiexxx

maggsmcg

Posts: 60
From: Hemel Hempstead
Registered: 07-Nov-2006

Re: Advice on Port Replacement
Posted: 11-Dec-2006 06:21

Reply

thanks jodie for your replies. It's not actually my daughter but my granddaughter. However I am there for both of them when they need me. The needle has always been a bit difficult to get in (she had it "installed" (ha ha) last January). She was a little plumper when they put it in so that might be why it was always "floaty" (community nurses word not mine). Only a couple of the local nurses and/or nurses in the ward were able to access it easily. They had the knack.

Now it becomes "stiff" after a few hours of continuous use or a few days of antibiotic IV's. If she does have to have a new one I hope this one last 11 yrs that would be great!

Her Grandad has a problem with all "strange" things that invade his body, stiches, canulars, medication - they just get rejected. I do hope Shelby hasn't inherited this gene too!

Pompeyfan

Posts: 34
From: Sussex
Registered: 12-Feb-2004

Re: Advice on Port Replacement
Posted: 11-Dec-2006 07:37

Reply

Hi,
when Mayleigh had her first port put in it only lasted three months. They replaced hers in the same place - going in through the scar they made before.
Good luck
Andrea

jac

Posts: 19
From: Scotland
Registered: 06-Nov-2006

Re: Advice on Port Replacement
Posted: 11-Dec-2006 08:28

Reply

hi
I had my first port for 13 years and just had it replaced this year. The surgeon looked at the original site, because sometimes they can reuse the site. However I I had too much scar tissue from years of use, so he just put it on same side a few inches lower down (mines is on my side).

I imagine if the port isn't working they might want to try a different location though.

The surgeon should come and discuss where the port is going before the op, and if not, you can ask to discuss it. It's important everyone is happy!

Jac

justme

Posts: 188
Registered: 06-Feb-2004

Re: Advice on Port Replacement
Posted: 11-Dec-2006 09:51

Reply

From what you've just said about it getting stiffer after a few days does not sound like an actual problem with the port in my opinion (im not a doctor just a pwcf). It sounds like the needle has been put in not all that well then as your granddaughter has moved about it and slept its moved the needle slightly, so its become stiffer. It sounds like the needle has originally been placed nearer the edge of the port than the middle so that when it becomes knocked slightly without any conscious knowledge in sleep (i do it all the time!) then it becomes stiffer. Have they also tried using a longer needle than what is classed as the standard one? I will admit im slightly fatter than most pwcf so i need a longer needle for them to get it into my port far enough, so its not stiff or causing pain.

Just another couple of things to consider!

Dawn

Posts: 29
From: Worcestershire
Registered: 06-Nov-2006

Re: Advice on Port Replacement
Posted: 15-Dec-2006 22:05

Reply

my daughter had hers replaced 18 months ago, the old one ''Grew out'' The round ring on the top of the port broke through my daughters skin. It looked like a bullet hole. Luckily for her the old one lasted almost 8 years. She does not like the way this one has been put in though. You can see the catheter tube on her collarbone! She had the first one put in at the Childrens Hospital in Birmingham, the second one at the Heartlands. Touch wood no problems as yet though!