Port Access

[anonymous]

I have searched past messages but did not get a clear understanding of how a port is accessed. It is possible that our 7 yr. old son will likely be getting a port.

We have been on home IV's through a PICC a few times but I don't understand how the process of Home IV's would work with a port. I read that there is a needle stuck in the port when you are on IV's and this needle needs to be changed every 7 days.

It looks like most of the ports are below the collar bone. Does this needle just stick out when the IV's are not running? Is this not uncomfortable? Do you use an IV pump or the IV "balls"?

Thanks

 

[Emily65Roses]

Ports are my friend. Hahaha.

A port is accessed through the roughly half an inch of flesh on top of the metal that is surgically implanted. You stick a 90 degree angle needle, like the one here:
<a target=new class=ftalternatingbarlinklarge href="http://www.snwlk.nl/images/DSC00002.JPG
">http://www.snwlk.nl/images/DSC00002.JPG
</a>through the bit of flesh, and into the hardware. The top of the hardware is this hard gel stuff, that keeps the liquid (blood, meds) in the port, but still allows needles to go through.

Yes a needle is in the port and needs to be changed, at the very least, every 7 days (if you want to remove it to shower or whatever, you can change it before 7 days is over, that's up to you - it just needs the at least once a week for sanitary reasons). Not all ports are below the collarbone. Mine is underneath my boob, on top of my ribcage. But either way, while you're on IVs (like say for two weeks), the needle stays in even when the meds are not running, right. Much like a PICC line. But when the round is done, you take the needle out, and just the surgically implanted hardware - the port itself - stays. The only maintenance it needs when not in use is a stick once a month to flush with Heparin so that the line doesn't clot.

Ask ANY other questions you may have (or if I didn't make something clear enough), I'll check back and anwer them for you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh I've also included two photos of my port and where it's placed so you can see what it looks like once it's in. Check those out if you like.

 

[JazzysMom]

I have heard so much good about these ports, but they give me the creeps to look at.......How long does it take to get used to having that spot on you!

 

[Emily65Roses]

As soon as it was healed and no longer sore, I was used to it. It took a while because my flesh was like "uhhh... this isn't mine, get it out of here." But after that healed, like I said, I got used to it. I hated it for a short while because it looked weird. Since then I have adopted a new opinion of it. That it's incredibly unique and kind of interesting to look at. Plus it's fun to freak people out with!! <img src="i/expressions/face-icon-small-happy.gif" border="0"> Mike says he even likes it. That it's very unique. So my having fun with freaking people out and his liking of it got me to accept it fairly quickly.

 

[anonymous]

Thanks for the info. Emily - you have been very helpful. I had a few more questions.

Does it hurt when you "poke" the needle through to access the port or to do the monthly flush?
Do you have to take out the needle to shower?
After having the port placed how long after surgery until you can use for IV's?
What is the recovery time like after surgery? Outpatient?

Thanks

Mike

 

[Emily65Roses]

It doesn't hurt that much. It's still a needle and it's still going through your flesh, but the needles used with ports are VERY thin. Mine call for 22 gauges (regular earrings are an 18, and gauges are smaller as the numbers get higher... so basically two sizes thinner than earring holes).

Yes, needles have to come out to shower, same as with a PICC. That is, unless you can find a way to tape it up really really well to where it's safe enough. That would have to be up to you and your doctor.

You can use the port immediately if you need to. You want to avoid it until it really heals if possible, because it'll be sore. But it's functional immediately. I was in and out in the same day the day I got mine placed. It was sore for a while. There's an inch long incision, and it was right on top of my ribs, so every time I coughed, it was pretty painful. On top of that, it's a foreign object, so it takes even longer to heal because your flesh, like I said, is saying "HEY WHAT IS THIS?? GET IT OUT OF HERE!!!!" I would say it takes several weeks to fully heal. I wasn't able to wear my regular underwire bras until months later, but those are kind of rough. I was able to wear regular bras perhaps 3-4 weeks later.

It sounds like it's a bit tough, and frankly, it is. But I still would recommend it in a heart beat. So I imagine that says a good deal about the port itself. It was worth the excess healing time to me, absolutely. Continue to ask if you come up with anything else. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

One more question.

What about CPT - Our son uses the vest and it would seem that this would be hard to do for a week or two after the surgery?

 

[Emily65Roses]

That might very well be the case. If so, you'd switch for a week or two and do manual CPT, avoiding the sore area. Or the Acapella or Flutter, where there's no physical roughness involved. As soon as your son feels it doesn't hurt anymore, you can start doing the Vest again.

 

[anonymous]

Our Brady has had a port since 2 months of age, it has been a blessing. We flush it every month and he has used it several times in the hospital and at home for IV three times now. It is not hard to do the home IV, just time consuming. We do Brady's our selves and it beats being in the hospital. He is now old enough to tell us he prefers to get stuck thru the port than the arm and he and we get very upset when they won't use the port. This is actually his 2nd one --the first lasted 4 years and he just got a new one in April 05. As far as the vest, we usually just do the hand percussion while he is accessed with the port.

Angie fourkidsmom--not signed in
Step mom to Brittany 13 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 4 with cf (5 in March!)
Mom to Taylor, 3 no cf, but chromosome 9q 21.2 q 22.1 deletion

 

[marisacfmom]

my daughter got her first port placed in june 05 she was 6 at the time. we were in the pool 5 days later. it has been the best thing we have every done for her. they have a numbing cream we place on it 1 hr. before it gets acessed. she still is scared to have it accessed, but then realizes that it is way better than a picc. she goes to school and does all of her vest treatments. she had it placed below her left collarbone. the only thing she misses out on when port is accessed is the pool and trampoline.

marisa mom of 3 kaylee-7w/cf; brooke 81/2 w/o cf; lexi 101/2 w/o cf

 

[bgchastain]

I got my port placed in June and wonder why I didn't do this earlier. It's so much easier than PICCs. Mine is under my left collerbone and I can do all of my treatments with it. When mine is accessed I can still take a shower as long as I just have my back facing the water and don't stand in the water directly. It freaked me out the first few times they accessed it, but you get used to it quickly because they do have to do it at least once a month. I did have to stay in the hospital longer after my operation because the surgeon nicked the top of my lung when he was placing it, but the spot healed after a few days of oxygen and I was told that it is a very small percentage that it happens to (it's just my luck) I would still say it's worth it, most of the time it's an outpatient thing with no problems. Please don't let that scare you because I didn't feel anything, they just had to do a few more xrays to make sure it was healing. Also, when my port in not accessed you can barely see my bump. Hope this helps, and good luck.

 

[anonymous]

I am on my second port, the first one was a PAS-port which was in my left arm (below the inside of my elbow). It lasted for 10 years. Then finally I had to get a second one, after some debate I decided to get one in my upper chest above my right boob. I am more of a meat-ier person so you can't really see mine (nothing like Emily's) like I said, I'm not so thin (but working on losing some weight). So mine just kind of looks a little like a doorbell under the skin. It is a blessing and I am so thankful to have it, makes IV's so much easier. I think Em is right on with her descriptions of how things feel and what to do. The only difference for me is that I do shower with mine accessed. I don't soak it in the tub when I have a needle in but I'll shower b/c the water is running off of me. I just make sure the tegaderm is firmly on or I replace it afterward. I couldn't stand going w/out a shower.
Placement was a big decision for me, the 1st one was when I was in high school so I got it in my arm. Then as an adult I got it in my chest after talking to my husband first. He said it didn't bother him; so it doesn't bother me.
~KELLI
28 w/CF

 

[Emily65Roses]

Yeah most people will shower with IVs, ports, or PICCs in. I can't because I'm allergic to the Tegaderm and all the really effective tape. So I use this Sorbiview stuff that's partially cloth (water would get right through, obviously). And the tapes that my skin doesn't FREAK OUT at are not as adhesive as the plastic tapes most people use. So I'm stuck not showering. Hahaha. But Kelli's right, a lot of people do shower. If you're using Tegaderm, and you're careful, I don't see why you couldn't. I just always forget that the Tegaderm is a much better tape than the ones I use. Hehe.

 

[becca23]

I just had my first port placed a couple of weeks ago and would recommend it to anyone, especially if they have a hard time placing piccs(it took 11 sticks the last time and 3 of the was under fluro) I do shower when my is accessed I just place tape and saran wrap over it. I LOVE MY PORT!!!

 

[JazzysMom]

Bless U Becca.......after 3 tries with my one picc insertion I told them no more....granted this was at home (the one & only time at home) with no numbing cream or anything...in the hospital for my very first one it took 2 tries because they hit the curve that many people have & at that time they didnt use the ultrasound so they wouldnt know. I still freak out about the "bump" that looks huge from the port....I am not sure what it is. The pictures might not do it justice.....but I know at some point it will get to the time that I have to choose!

 

[becca23]

The bump isn't not that bad. I had mine placed right below my collarbone, because I could be awake for it, but I know other people who have it placed below the breasts it just what you prefer. as for the several picc sticks, that was the first time the had trouble placing a picc, our cf center does not place them anymore so I had to go down to the cancer center, which is a whole another story, especially since I have MRSA. They kept asking me what they wanted them to do and I said just get the thing started, I really had no other choice.

 

[littledebbie]

EMLA ceam Emla cream Emla cream. It's wonderful, when you're going to be accessed you just put a little on your skin, over your port, then you cover the cream with some tegaderm. when an hour passes you wipe it off and there's this white spot on your skin where it soaked in basically giving you a big NUMB (yeah) target. I am a big baby and I'm so squeamish that in the 6-7 years I had mine I never accessed it myself, nor did I watch, ick. So I just went and had it changed once a week at the infusion center or let the in home nurse come by and do it, no big deal. Mine was below my breast which was good, it did stick out though, and my surgeon placed it, unfortunately, right on my bra line which made bras rather uncomfortable....silly man, but this probably will not be an issue for your son <img src="i/expressions/face-icon-small-smile.gif" border="0">

There was slight problem placing mine so they had to make a small incision on my neck to thread it along, but it was no biggy, they used my line right away. My placement was done when i was about 3 days from finishing a tune up that way I was almost at my best and I could recover in the hospital for a day.

 

[JennifersHope]

This is what I learned today.. My boss who inserts PICC lines herself and used to be a CF nurse.. (can't get a more understanding boss than her) Well she was fixing my PICC Line today.. the dressing was a mess .. I did it myself HA..and she actually cut the stiches in my picc and pulled it back .... the butterfly thing was shoved all the way in..NO wonder I have found it so uncomfortable..

Anyway....EMLA cream is great for giving shots.. or doing and injection..but for PICC line, IV Or Central line insertion it is very BAD.. IT is a vasoconstictior..meaning it cuts off the vascular supply (Shrienks the arteries and veins) making it harder to get IV, PICC OR Central line access.. The cath.. won't advance as easy.....


I am scared to get a Port..My primary would give me one in a minute... this is my third PICC in 8 months.. so I don't know..the PICC is so noticable and not that comfortable.. I would be afraid to have something in my body perm.......but for me.. I don't know I think my IV use will be cut way down after school.... just been on a bad streak lately... though my primary said in his discharge report my days of mild CF are over... I tend to disagree..


Jennifer...

 

[JazzysMom]

The last 3 piccc lines have been done differently at my hospital. They use to be done by my the IV Team in your room using the numbing cream & no stitches. Now they are done in radiology using shots of novacaine (another little pain mind you) & they use stitches to hold it in. I think the stitches are the worst part of it all. It hurts for days after from the damn stitches.

 

[anonymous]

My daughter has had her port for eight years now. She had the implant done when she was four years old. At the time she could of cared less. She didn't start hating it until she was about nine. She is now 12 and a half and hates it more with every passing year. I don't know if you ever truly get used to it.