posted
I've had Lyme for the past 12 years (which is difficult because I'm only 25) and have mostly been on and off oral meds.
Two months ago I got a picc line placed in my left arm, within two weeks a rash developed from my tegaderm.
My bandage was changed to a few different "hypo-allergenic" types, but the rash just got worse, to the point where they were afraid the line would get infected, so they removed it.
I'm now trying to decide between trying a picc line again in my other arm or going for a port.
Because of my allergies to bandages my doctor suggested I get a port and have it access/deaccessed daily.
He's had many patients do it this way with no infections.
But I'm also seriously concerned because everyone on here, along with my infusion company highly recommend me to not do it that way (cause it's more likely to get infected).
I was wondering if anyone on this forum has accessed/deaccessed their port daily and how that experience went for them?
I've been reading many, many, many posts on this forum about picc line vs. port-a-cath and I'm just more confused than ever about what to do.
I want the freedom of the port, but am afraid that if I don't access it daily that the bandages will cause another rash and it will have to be removed, and I don't want the surgery and scar to have been for nothing.
I'm so confused and keep going back and forth on what I want to do.
Any and all help/advice would be greatly appreciated!!
Thank you! Elizabeth (lymeinnh)
Posts: 33 | From Lebanon, NH | Registered: Oct 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Lymeinnh,
I never had a port just a pic .
Hopefuly some of the late night crowd will be able to help .
Good luck
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
hi elizabeth, I have a port, my son has a port. He acessess daily and never has problems. I have dome daily acceses when I have needed to. I have also found that the dressing called IV 3000 to be most hypo allergetic. I was allergic to everything else.
I hope this helps I wish you well!
Posts: 663 | From NH USA | Registered: Sep 2004
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I have used the IV3000 on a picc line before, but it didn't help my rash at all.
Though I'm not certain if it's because the rash was already there.
Maybe if I started with the IV3000 instead of the Tegaderm first, then a rash wouldn't appear?!!?
I just don't know what to do. I keep flip-flopping.
<> -Elizabeth
Posts: 33 | From Lebanon, NH | Registered: Oct 2006
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bettyg
Unregistered
posted
Welcome Elizabeth!
I've NOT had a PICC, etc. but the allergy to bandages caught my attention.
I'm allergic to ALL surgical tape; it takes all my skin off in the areas used.
I called 3M HQ in Minneapolis, and talked to their most knowledgeable person about that. She said they have an ointment to put on PRIOR to tape is used, and my skin should remain in tact.
Perhaps if you google 3M headquarters, you can find their site, and ask a question about bandages if they would be able to enlighten you/MDS. Just a suggestion....Bettyg
I'll send you a private message, PM, with my 19 pages of newbie links/advise.
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i appreciate the 3M advice, i heard a similar thing from my infusion company.
i look forward to your PM, though I'm a nove to this site, i'm not a novice to Lyme, but i do believe that there's always something new to learn, and it's so wonderful how much everyone here is willing to share!
-Elizabeth
Posts: 33 | From Lebanon, NH | Registered: Oct 2006
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posted
anyone?!?!?! Posts: 33 | From Lebanon, NH | Registered: Oct 2006
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Elizabeth,
I have a port-a-cath and I've had it for almost 2 1/2 years (placed in July 2004) so I've had A LOT of experience with ports in general (I also had a PICC line in 2002 so I'm experience with those, too, but not as much as ports).
I personally haven't accessed/deaccessed daily, I generally de-access twice a week to take showers and have a little bit of a break. I do all my own accessing and deaccessing and haven't had regular nursing visits in about a year and a half. I have had zero problems with my port and I really love it.
While I've never had persistant rashes from the dressings, I've had some minor rashes but they wax and wane and I haven't had anything near what you've had with them.
I do know some people who have accessed/deaccesse daily and it has worked out fine for them. I think as long as you're careful and make sure everything is sterile you can limit your chances of infection. It seems that the best idea whatever you do would be to get a port.
You could try the IV 3000 from the start and see if you could tolerate that and if not, you definitely would have had problems with the PICC. So you could go to the daily accessing/deaccessing and see how that works.
Maybe you'd be able to tolerate having a dressing on just for a day or two and you could de-access and re-access 3 or 4 times a week instead of everyday. At any rate, with a PICC you wouldn't have the option of having the dressing off so a port would give you the best chance at being able to stay on IV treatment. And the surgery to have a port put in is usually very easy - mine took all of 20 minutes (of actual surgery) and I believe it's just as easy if not easier to take it out and a good surgeon can go back through the original incision scar to take it out so you wouldn't have any extra scars.
That's just my 2 cents. If you'd like more info about ports, feel free to PM or e-mail ([email protected]) me. There's a very informative post here - Port-a-Cath. I hope you're able to figure out what will work best for you!
Peace and healing, Annie
Just editing to add that you might want to look into yeast as being a cause for your rashes. That's the case with some rashes like this and if that's what it was you could be treated for it (with Diflucan or Nystatin) and that might allow you to use dressings more easily.
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