Just got a port, don't really know what do do with it.

[jbrandyn]

Hey everyone!
So after a particularly rough weekend in the CF sense I got a port today instead of the normal PICC line, I will be returning to my "normal" life tomorrow at school. I was wondering if anyone had any tips on having a port and using it as an outpatient as well as what kind of things to or not to do while it is not accessed.
Thanks much,
Brandyn

 

[just1more]

If it is not accessed, you can do anything you want. The only consideration would be to avoid direct impacts (ie don't let it get hit hard).

If you are not using it, it will need to be flushed 1x/month. All you will do is access, push a syringe of saline and then heparin, and then de-access.

When accessed, you will need to avoid getting it wet, but otherwise again just protect from physical damage. One of the nice things is that, especially once you learn to access yourself, you can de-access for a shower, swimming or even 'personal' activities and then just re-access before your next dose. Depending on what you are taking, you can get up to 6-8 hours of a break.

You wouldn't want to access for each dose, but over a course of 2-3 weeks of IV's, there is no reason to not take breaks w/o it so you can live. That is one of the best features is you aren't stuck with it dangling from you for weeks. In addition, no more need for PICC insertions. I would strongly suggest learning to access yourself (it is not hard) and you can then be independent and even travel while on IV's without worry.

The only drawback that I can really think of is that accessing/de-accessing MUST be done sterile. That means glove/mask and sterile technique. We won't let anyone other than my wife/I and a couple of nurses we know very well access either of our boys with one. I've seen too many nurses with sloppy technique and a port infection is to risky to play with.

If you have any questions, just shoot. There are several here with them.

 

[beleache]

Hi Brandyn, Everything Tom said is pretty much right on. I do de access myself, but do not access myself. Yes, I am a chicken lol. When on home IV's the nurse comes once a week (or more if needed) to re access my port. On that day I usually will de access myself so I have several hours of freedom Make sure you have ppl who know what they are doing as far as accessing your port. Always ask them if they are good at it & if they dont seem confident ask for someone else. In hops they can send someone that specializes in port access (usually someone who accesses for chemo) Dont ever feel that you may hurt someones feelings. I love my port & hope you get many good years from yours.. joni

 

[Cbegley]

Yes, these two are correct. My husband has a port as well, but I'd just like to restate that it is very important that you flush it with saline and heparin once a month if it is not accessed because if you don't, there is a possibility that it can clot up-which in some cases require surgery to fix it. So, good luck, and take care!

 

[MissAlexsBP]

Hi!

I have had a port since 2007 and I absolutely LOVE mine! It has made my life infinitely easier. Everything everyone has said is pretty much what I would say. When you are accessed, you can use Aqua Guards (like a waterproof tegederm) and they make showering quite easy! I actually heard about them on this forum and they have made being accessed much easier. If you ever want to talk about ports you can PM me or ask away!