Picc Vs. Port For Iv Fluids To Stabilize Dysautonomia Sx

[Poohbear]

Hi to all!

I've not been posting much since my health has steadily declined and on top of that I had to move.

Anyhow, I've had a PICC line for a little over 12 weeks now. The Dr had originally said he would leave it in at least a year (the power piccs are now designed for that and actually a lifetime if needed). The line itself has done well and the IV fluids do help with my stabilizing my hr and bp. What has not done well is that the line is sitting near a nerve so I've had lots of nerve pain off and on.

The worst part for me is that I was sensitive to adhesives and tapes beforehand and I did ok with Tegaderm for the first 7 weeks and then my arm said "no more". We tried various types of dressings and now ANYTHING and EVERYTHING that has adhesive gives me a very severe reaction. Every nurse and every Dr that has seen my arms gasps in horror when they see my arm and they all say, "We've never seen anything this severe with a picc site before" (Don't you just get sick of hearing stuff like that???!!)

Luckily the insertion site itself has done really well aside from the skin irritation.

Anyhow, the edema in my arm is not wanting to subside even though we've gone to a complete cloth dressing (which isn't sterile so it increases risk for infection) and the new Dr where I now live, wants to pull the picc and replace with a port.

She said something about she would give me the option if I want the port in my arm or in my chest. In some ways I really don't want a line at all. I have a pacemaker so if I get an infection it's more serious than that of a "typical" patient because the pacemaker wires could have to be removed however, at this point my veins are shot and I am getting fluids, nutrition and some of my meds via IV access now and the Dr says this will probably be a lifetime issue in my case.

For some reason the port seems scarier to me (probably because I don't know as much about it).

Any experiences from folks here?

I was leaning to wanting the port access in my arm but I don't know if that's a good option. The picc line in my arm has caused lots of nerve pain in addition to limiting me in what I can do. I was told I would be able to be "normal" with the picc but I found with moving that was not the case. If I try to pick up anything of significant weight the line acts up and wants to inch out.

Any experiences or words of wisdom would be welcome!

[Ernie]

Hi Poohbear,

I don't have any experience in that field but I wanted to say hello. I am sorry that your health has declined so much lately. When I read your post I had tears in my eyes. You are surely a courageous lady.

[corina]

hi poohbear!!!

like ernie, i can't actually help you with this, it's just that i wanted to say hi to you. you know, i always hope that people are doing better once they leave the forum for some time. unfortunately that is not always reality. wishing you better days to come pooh and hope that others can help you with the port.

warm wishes,

corina

[Sunfish]

hi pooh -

okay, i just wrote to you under amy's post about PICC dressings, your health, etc. obviously it would have fit better here but ah well; i hadn't seen this post yet. i am so sorry to hear though what's been going on with you and definitely feel like i can relate; while i don't have a pacer i've been on IVs a minimum of 18 hours a day since march now & it's not really anticipated that there will be an end-date at this point for me either. obviously anything is possible & hope's eternal, but reality is that things aren't heading in the direction anyone would like....but anyhoo. i too had to move and while i wasn't doing the physical part myself it was (and still) is exhausting. i wouldn't wish all this mess on anyone. i am glad to hear though that the fluids have helped your HR/BP at least a bit...that hasn't really been the case for me, at least not beyond keeping me at a baseline of hydration (which is of course important & still a good thing).

i had a lot of problems with my PICC dressing myself, as well as with my broviac dressing in the short time i had it before we had to get rid of it. i posted a few adhesive ideas in the other post JUST in case i found something you hadn't tried; i realize that it's a longshot. sorry to hear you have all the nerve pain too; i think emily/ dancinglight had that when she had a PICC for a short while after gallbladder surgery.

i've done a lot of reading/research/talking with folks - both patients/consumers & medical professionals - about different line options. i had a PICC for just over 4 months, then switched to a broviac (more "permanant" tunneled catheter, in chest), now have a PICC again b/c when the broviac had to come out emergently due to clots & infection i needed the quickest line possible. chances are i'll be getting another tunnelled catheter in a few months.

i honestly have never heard of a port in one's arm. obviously i don't know everything, but it's never come up in any conversations with anyone i've had or in any reading or research i've done which is a bit odd. in general PICC lines are more prone to infection than ports or tunnelled catheters (hickman or broviac lines) but it is often easier to catch an infection earlier with a PICC and thus it doesn't tend to be as serious. it's also not as close to the heart/pacer with a PICC (or anything in the arm i suppose...like i said i wasn't aware of other options there) which is advantageous in terms of keeping it localized infection-wise rather than systemic. obviously these "tendencies" only mean so much for an individual; i've had a PICC for almost 8 months without a problem (infection-wise) yet my broviac line lasted less than a month before i had infection & clots. go figure. i don't know how much you're "hooked up" IV-wise, but my GI doctor isn't keen on ports for people who need to be accessed so regularly; different doctors have different opinions though so it's not necessarily an issue of right or wrong. (i may still bring up the issue again b/c i'd love to be able to get in the water/pool - even if only rarely - and a port is the best way to make that happen.) but i digress. if you don't have to be accessed 24/7, a port generally has a lower risk of infection than the tunnelled catheters; if you're accessed all the time the risk is very similar.

for the short time i had it i preferred access in my chest as i found it easier clothing & mobility wise. like you said it doesn't allow for normal arm movement/positioning, especially when there are fluids/meds/nutrition running. i haven't pushed getting a new line now only b/c i don't see the need to fix something that's not broken, but when the time comes for a new one i won't be getting another PICC if i can help it. the PICC is definitely the easiest to put in though...as i'm sure you know the others are more invasive and leave you pretty sore for a few days after.

you may also want to think of contacting the oley foundation to see if they have any thoughts/ideas. they're a support organization for those on tube feeding or IV nutrition and thus also have a lot of experience with IV access info. i've found them to be a great resource. the website is http://www.oley.org.

okay, done with my scattered ramblings for the moment.

hang in there,

melissa

[Poohbear]

Thanks Ernie, Corina & Sunfish!!!

I SO appreciate the encouragement and advice.

I have tried every dressing out there and even the mostly cloth light adhesive broke me out. I'm now starting to react to just the cloth dressing. WHAT???? I do NOT understand why unless it is just that my skin is so irritated it doesn't want ANYTHING on it. Go figure! I'm tired of being so unique---I would like to be normal for a few days!

Yes, there is an arm port-- one is made by P.A.S. port and I know Bard also makes several that can be placed in the arm. I am leaning more to having the chest port though because #1 I think since I've had so much nerve pain with the Picc in the arm I would have the same problem with the arm port. #2 With the chest port you have both hands free to place the needle if home health nurse isn't around.

I have been told that most likely we will avoid Hickman, Broviac or Groshong lines as those are more prone to infection than the ports. You are right...each Dr has their preference.

They seem to feel that having a totally "closed in" system is the least risk for infection. Both the Dr and the home health agency said they have never seen an infection with the port but they do see infections regularly with hickman, broviac, groshong and piccs.

However, the former cardio I had said "no" to the port because it was closer to the heart.

I really don't understand the difference because the picc line sits at the top of the right atrium. Don't ALL these lines go directly to the heart?? If so, if you were to get an infection, it is going to get to the heart no matter what. If that's true then it seems the port would be less risk in my case.

Ahhhhh.. Just one more thing to figure out and research huh?

I just hate that any of us have to deal with these things.

Sunfish, I'm sorry you are still struggling so much too!!

[taylortotmom]

I loved my port and I would encourage it if it is a feasible option for you. My port did not get infected but because of the consuming Sepsis in my blood it had to be taken out before it did become infected. My pacemaker almost had to come out. But, I already miss my beloved port and the ability it gave me to get fluids overnight. Hope you find a solution that works for you.

Carmen

[bren62]

As far as I know all the lines go to the heart or right near it. If a PICC line becomes infected it's just as serious as any of the other lines.

I have worked with ports off and on for a long time. I did see one that became infected and had to be removed, but that was just one that I know of. The one benefit of a port is if you don't need to use it on a daily basis you can remove the needle and be free of it for awhile. If the port is used continuously then you will need some kind of dressing to cover the needle, and the needle will need to be changed either weekly or every 2 weeks depending on the doctor's protocol.

Since picc lines are so small they can block quicker then the other lines. It all depends on the line, what it's used for and if it's properly cared for. I'm not familiar with the new picc lines that are used for long term use. If I needed a line for long term use, like more than a year, a picc line would not be my first choice.

Keep asking questions, weigh the pros and cons and then decide what would be best for you.

Good luck.