posted
I'm set to start IV in a month. I'm trying to decide between my options. I wish I could continue to sweat a bit (in the gym and at the hot tub/steam bath/sauna) is it possible with any of them? I'm also obviously concerned about sepsis, and i was told a port is less risky than a picc regarding sepsis risks - is this correct and a big concern? Does the port leave a scar? thanks
-------------------- We will win Posts: 135 | From California | Registered: Jul 2010
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posted
I am at this same point. I was told I have chronic neuro lyme and should get the chest port since the treatment will be longer than a few weeks..the Picc line is easier to get infection and many times needs to be changed for the long term. I would think you have a small scar from the port...My son in law has scars on his arm from Picc lines used in 6 weeks chemo so I think they both have minimal scars. If you are going to get wet you should get the chest port..this is the problem with the PICC...you cannot get it wet at all.....
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I had a picc and a port and I would opt for a port any day. You can sweat and get wet and anything you would normally do. I had mine placed under my arm (bicep) I had it for a year with no problem and loved it. I have no scar from it either.
Good Luck,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Based on these answers and the pm i got, it looks like a port is the way to go. I did not know it could be placed on the arm, I thought it had to be on the chest. So with a port, gym + sauna should not be a problem?
I still don't know what a hickman is, which is my LLMDs first choice. But ultimatly she will let me choose.
-------------------- We will win Posts: 135 | From California | Registered: Jul 2010
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posted
I had the option and went with the port. I think it's a better option because not only was it a piece of cake to both put in and take out, you don't have to worry about keeping it dry etc...less chance of getting infected.
You will have a slight scar afterwards, but it's not bad. My doctor did a little plastic surgery on it so it wouldn't be as noticeable. You'll just end up with a scar that is a straight line, about 3/4 inches long.
Posts: 215 | From Phoenix, AZ | Registered: Jul 2008
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posted
With a port, yes...you can go to the gym and sweat etc...it's under the skin so you don't need to worry about it getting wet. There is nothing "exposed", like with the picc line.
Posts: 215 | From Phoenix, AZ | Registered: Jul 2008
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posted
anyone else had a port installed in the arm?
What do you mean by the plastic surgery comment. Do people sometimes go to a plastc surgeon to get it removed to minimize the scar?
-------------------- We will win Posts: 135 | From California | Registered: Jul 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Huh? When the port is accessed (meaning the needle is in to infuse), you can't get it wet, the same as with a PICC. And it has to
be accessed in order to infuse. If you aren't infusing daily--say 4 days on, 3 days off---you could not be accessed on the days off. Otherwise, you are accessed all the time.
But I have a port now, had a PICC last year---I find the port much better. Of course, none of them is hassle-free, though. But necessary!
It's helpful to research it well, so you know what to decide and expect.
Posts: 3790 | From around | Registered: Mar 2008
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posted
I had a groshong catheter and it slipped right inside my bra.
It left a tiny scar that is not noticeable.
After 6 weeks you can shower etc without covering.
Posts: 281 | From san francisco | Registered: Jun 2006
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Mailbox is cleaned ! I've had my PICC for 8 mos. now. It can stay in for a year or more. Technically, at the year mark, I should have it changed over, which is simple by inserting a wire and removing the PICC in place now and just threading a new one over the wire= no pain or problems for the new line.
So long as you take care of your PICC, it is the least invasive of all central lines. I have yet to have a problem with mine. If you decide on a PICC, demand a Groshong PICC.
A port will leave about a 2 Inch scar in the chest wall. Although once in place, they are easier to deal with, removal of the port is yet another procedure where the skin must be opened again.
Keep in mind that although a port can get wet, it can only get wet when not accessed with the Huber needle. So basically, you would have to shower once a week when the nurse arrives at your home to change your Huber needle. Most nurses don't want to wait around while you shower. In other words, so long as your on IV therapy, there will always be a needle in your Port. It is protocol to change that needle over once per week.
I don't the data on infection rates, but I have seen both become infected and I have seen both become clotted, requiring further intervention.
PM me if you have any more questions....
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
well now im hearing different viewpoints, which I suppose is why we're here
So the procedure "changing the Huber needle" is the same as "deaccessing then reaccessing"?
in a pm i got, the lady said she learned to access/deaccess for her daughter, and that I could probably do it on myself. So I was under the impression that I could deaccess it after the morning infusion and reaccess it before the night infusion. daily. i think ill pulse rocephin 4days on 3 days off but zithro IV 7 days a week.
I'm a student, live alone, and cannot shower only once a week. Especially that this illness tends to make me sweat for little reason.
so hickman - forget about it? if i get a picc, a groshong is the way to go?
when you guys talk about plastic, it's not to get it removed by a plastic surgeon, but rather once the scar is healed, to go to a plastic surgeon to try to erase the scar?
anybody else with a port in the arm?
-------------------- We will win Posts: 135 | From California | Registered: Jul 2010
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posted
What I meant by "plastic surgery" is that my doctor, when he removed my port (I didn't mean he was a plastic surgeon), cut the skin where the first incision was made so minimize the scar. They did a great job and I have a small maybe 1 inch scar, barely noticeable.
Here is my 2 cents: If you're going to need this Picc/Port for many months, like 6 months to a year, I'd go with the Port. If you are only needing treatment for a matter of months, it might be better just to go with the Picc line.
Posts: 215 | From Phoenix, AZ | Registered: Jul 2008
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posted
A couple things about the shower thing with the port. I use one of those shower heads that come off. You use it below the port and om your arms. I use a wash cloth to wash under my arms , neck, and face. I kind of lean over to wash my hair to avoid getting my chest wet and do it last and wrap it up in a towel. Once a week I deaccess myself....and numb it up for my nurse. He or she can teach you how to do it. I have had both the picc and port. My picc got infected a couple of times and would bleed out a lot bc my kids pulled on it by accident. I know everything is up to the individual, but I like the port better. What is a tiny scar in the grand scheme of things if you are weighing pros and cons and have gotten lots of infections.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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